“The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention

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COVID-19 social restrictions prevented families and friends from being with the dying and participating in usual rituals to honour the dead. This resulted in social disconnection, feelings of guilt, and difficulty in making sense of the death and reconstructing relationships. In response to this context a theoretically informed, co-produced web-resource to facilitate meaning-making, which situates bereavement in the context of family and friends, was developed. This paper describes the development of the web-based intervention. Study aims To co-produce a web-based intervention theoretically informed by the family level extension Dual Process Model and Family Sense of Coherence, and pilot the intervention gaining user feedback to inform refinements in readiness for adoption and implementation. Methods Following a scoping review, a mixed methods study was undertaken using an online survey via questionnaire and virtual co-production workshop with bereaved people and bereavement professionals. Results Survey respondents (n=32) reported the pandemic negatively affected bereavement (guilt, isolation, inability to bear witness) but also presented new opportunities to celebrate the deceased and support the bereaved (new funeral rituals, technology, remote contact, social acknowledgement of grief). Sense-making and managing bereavement were helped through information-giving, support networks, and relocating the person within the family context. A web-resource to facilitate collective grief was viewed positively and endorsed. Key content including family activities to stimulate support, information regarding the range of grief experience and dealing with the practicalities, along with other sources of support was agreed by workshop participants (n=5) to form the basis of the intervention. Conclusion The publicly accessible Families and Friends in Bereavement intervention encourages consideration of bereavement in the context of close social networks. It enables grief to be understood and managed within a shared experience by promoting communication and meaning-making. 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F1000Research 2024, 12 :1024 ( https://doi.org/10.12688/f1000research.134193.2 ) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. Close Copy Citation Details Export Export Citation Sciwheel EndNote Ref. Manager Bibtex ProCite Sente EXPORT Select a format first Track Share ▬ ✚ Research Article Revised “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] Previously titled: “The person was like the glue in the cracked pot which was no longer there”: Family-focused support for bereavement via co-production of a web-based intervention Natasha Campling https://orcid.org/0000-0002-4158-7894 1 , Susi Lund https://orcid.org/0000-0001-8255-8785 1 , Alison Allam 1 , Gail Precious 2 , Michelle Myall https://orcid.org/0000-0001-8733-7412 1 Natasha Campling https://orcid.org/0000-0002-4158-7894 1 , Susi Lund https://orcid.org/0000-0001-8255-8785 1 , [...] Alison Allam 1 , Gail Precious 2 , Michelle Myall https://orcid.org/0000-0001-8733-7412 1 PUBLISHED 22 Apr 2024 Author details Author details 1 School of Health Sciences, University of Southampton, Southampton, England, SO17 1BJ, UK 2 Childhood Bereavement Network and National Bereavement Alliance, London, E8 3PN, UK Natasha Campling Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Project Administration, Supervision, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing Susi Lund Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Writing – Original Draft Preparation, Writing – Review & Editing Alison Allam Roles: Conceptualization, Writing – Review & Editing Gail Precious Roles: Investigation, Writing – Review & Editing Michelle Myall Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Project Administration, Supervision, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing OPEN PEER REVIEW DETAILS REVIEWER STATUS Abstract Background Families, friends and support networks are key to managing bereavement. COVID-19 social restrictions prevented families and friends from being with the dying and participating in usual rituals to honour the dead. This resulted in social disconnection, feelings of guilt, and difficulty in making sense of the death and reconstructing relationships. In response to this context a theoretically informed, co-produced web-resource to facilitate meaning-making, which situates bereavement in the context of family and friends, was developed. This paper describes the development of the web-based intervention. Study aims To co-produce a web-based intervention theoretically informed by the family level extension Dual Process Model and Family Sense of Coherence, and pilot the intervention gaining user feedback to inform refinements in readiness for adoption and implementation. Methods Following a scoping review, a mixed methods study was undertaken using an online survey via questionnaire and virtual co-production workshop with bereaved people and bereavement professionals. Results Survey respondents (n=32) reported the pandemic negatively affected bereavement (guilt, isolation, inability to bear witness) but also presented new opportunities to celebrate the deceased and support the bereaved (new funeral rituals, technology, remote contact, social acknowledgement of grief). Sense-making and managing bereavement were helped through information-giving, support networks, and relocating the person within the family context. A web-resource to facilitate collective grief was viewed positively and endorsed. Key content including family activities to stimulate support, information regarding the range of grief experience and dealing with the practicalities, along with other sources of support was agreed by workshop participants (n=5) to form the basis of the intervention. Conclusion The publicly accessible Families and Friends in Bereavement intervention encourages consideration of bereavement in the context of close social networks. It enables grief to be understood and managed within a shared experience by promoting communication and meaning-making. READ ALL READ LESS Keywords bereavement, grief, family-focused, theoretically-informed, web-based intervention, co-production, COVID-19 Corresponding Author(s) Natasha Campling ( [email protected] ) Close Corresponding author: Natasha Campling Competing interests: No competing interests were disclosed. Grant information: The initial work to develop the resource was funded by the National Institute for Health and Care Research Applied Research Collaboration Wessex (NIHR ARC Wessex) (Covid small grant: Myall & Campling). The views expressed are those of the authors and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care. Ongoing iteration of the resource has been funded by a University Hospital Southampton research and development grant (GNT0526: Campling & Myall). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Copyright: © 2024 Campling N et al . This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. How to cite: Campling N, Lund S, Allam A et al. “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.12688/f1000research.134193.2 ) First published: 22 Aug 2023, 12 :1024 ( https://doi.org/10.12688/f1000research.134193.1 ) Latest published: 22 Apr 2024, 12 :1024 ( https://doi.org/10.12688/f1000research.134193.2 ) Revised Amendments from Version 1 Version 2 responds to peer review feedback. In summary, we have made the following changes: Title – we have included the name of the intervention. Abstract – in the results we have added number of survey respondents and workshop participants. We have also clarified that the web-based intervention is publicly accessible and included a link to the website. Introduction – we have added additional references in specific to the challenges of meaning-making in the context of COVID-19. We have added in further detail to explain Family Sense of Coherence theory and how we have used it previously. We have also added in additional references for web-based interventions providing psychological support. Methods – we have included additional sentences on co-production as a methodological approach. We have standardized how we have referred to our theoretical underpinning. We have included the number of full papers screened from which we extracted data as part of the scoping work and we have deleted Table 1 and included the content in the main manuscript. Results – we have added in sub-headings of the themes generated from survey data analysis. We have clarified the contribution of the artist and musician. Discussion - we have provided additional detail on further work to encourage adoption and spread of the web-based intervention. References – we have added additional references into the list. Version 2 responds to peer review feedback. In summary, we have made the following changes: Title – we have included the name of the intervention. Abstract – in the results we have added number of survey respondents and workshop participants. We have also clarified that the web-based intervention is publicly accessible and included a link to the website. Introduction – we have added additional references in specific to the challenges of meaning-making in the context of COVID-19. We have added in further detail to explain Family Sense of Coherence theory and how we have used it previously. We have also added in additional references for web-based interventions providing psychological support. Methods – we have included additional sentences on co-production as a methodological approach. We have standardized how we have referred to our theoretical underpinning. We have included the number of full papers screened from which we extracted data as part of the scoping work and we have deleted Table 1 and included the content in the main manuscript. Results – we have added in sub-headings of the themes generated from survey data analysis. We have clarified the contribution of the artist and musician. Discussion - we have provided additional detail on further work to encourage adoption and spread of the web-based intervention. References – we have added additional references into the list. See the authors' detailed response to the review by Lorenza Entilli See the authors' detailed response to the review by Anne Finucane READ REVIEWER RESPONSES Introduction COVID-19 first emerged in December 2019 and spread rapidly, becoming a global pandemic resulting in an unprecedented level of deaths, causing mass bereavement worldwide. While significant focus has been on deaths from COVID-19, the impact has been far reaching affecting all those bereaved from any cause during the pandemic. Before COVID-19, 60% of bereaved people managed their bereavement with the help of family, friends and support networks ( Penny, 2020 ). Social restrictions resulted in significant disruption and inability to provide these usual forms of support. Furthermore restrictions, including those applied to funerals and lack of opportunity to spend time or visit the dying, disrupted social rituals marking the death leaving family members feeling they were unable to bear witness and honor their dying and dead. The ensuing social disconnections ( Smith et al. , 2020 ) and guilt ( Bear et al. , 2020 ; Torrens-Burton et al. , 2022 ) exacerbated the challenge of bereavement. For many, death became unexpected, out of time and place. The social disconnection between a dying person and family, caused by social distancing precautions, meant the construction of family narratives of end-of-life was compromised. A review of the international literature, across 13 countries during COVID-19, found that whilst there was diversity of experience based on culture and belief systems all countries identified significant impact on family bereavement ( Stroebe & Schut, 2021 ). Almost half (49%) of respondents to a survey of 2,000 UK adults, carried out by Dying Matters, agreed that being unable to be with someone as they died, or attend their funeral, would make it harder for them to process the death ( Penny, 2020 ). It is narratives that serve to link the biography of a living family member with the death and which are important in the process of making sense of what has happened, paying tribute to the deceased and in reconstructing bonds between the bereaved and their deceased family member ( Klass et al. , 2014 ; Walter, 1996 ). This meaning-making process is essential for family wellbeing and resilience ( Gilbert, 1996 ), yet it was challenged by the chaos and confusion of the pandemic and variance of COVID-19 control measures ( Milner & Echterling, 2021 ). As highlighted by Walsh (2020) during COVID-19 families experienced multiple stressors and needed help to build resilience in their grief, strengthen family bonds, accommodate uncertainty and navigate challenges. Meaning-making processes necessitated shared attempts to make sense of loss, identify previously utilised coping strategies and develop a sense of coherence. Most Western focused professional bereavement support interventions and services are underpinned by grief theories which concentrate predominately on the individual, mitigating psychological distress, and identifying and preventing complicated grief ( Laranjeira et al. , 2022 ). It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally. Services are often delivered face-to-face or by telephone, others are group-based, with inequitable access dependent on the setting in which the death occurred. To address these gaps in provision, de-professionalizing bereavement for those individuals not at risk of complicated grief and shifting the focus to the wider family, this study co-produced a web-based intervention Families and Friends in Bereavement adopting a family-focused approach. Family support is recognized as key to managing bereavement, yet most grief theories focus on individual rather than collective experience ( Stroebe & Schut, 2015 ). A notable exception is the family-level extension to the Dual Process Model of Coping with Bereavement, in which Stroebe and Schut (2015) describe family level tasks influencing loss and restoration orientated coping. Loss orientation refers to dealing with processing the stressful aspects of a loss experience and focusing on the deceased (e.g. memorializing and thinking about the person who has died), restoration orientation refers to coping with other losses which manifest as a result of the bereavement (e.g. financial hardship, adapting to new routines and roles). Restrictions during the pandemic contributed to significant additional stressors and precluded the usual oscillation between loss and restoration orientated processes by disrupting everyday living which in usual times offers a degree of respite and distraction from confronting or avoiding family stressors ( Stroebe & Schut, 2021 ). Family Sense of Coherence, was developed in response to family stressors over the course of a lifetime, and provides an additional theoretical foundation for family-focused support ( Antonovsky & Sourani, 1988 ). We have used it previously to inform a family support intervention in the context of life-limiting illness ( Duke et al. , 2020 ). Rather than focusing on distress (ill health), Family Sense of Coherence has three core constructs (comprehensibility, manageability and meaningfulness) which are concerned with family strengths, resilience and meaning. In the context of bereavement, it is influenced by the comprehensibility, manageability and meaningfulness of the death. Combined, Family Sense of Coherence theory and the focus offered in the family level extension to the Dual Process Model, provided a theoretical framework to guide family orientated bereavement support. The Families and Friends in Bereavement intervention was developed to encourage users to consider their bereavement experience in the context of family, friends and close social networks, to promote communication and meaning-making, fostering coherence and resilience ( McKnight, 2015 ). Web-based interventions are known to provide effective and accessible psychological support ( Dominguez-Rodriguez et al. , 2023 ; Brog et al. , 2022 ; Heckendorf et al. , 2022 ; Cowpertwait & Clarke, 2013 ; Knowles et al. , 2017 ; Stroebe et al. , 2008 ); and they have the advantage of enabling users to access support when needed, increasing the potential effectiveness of bereavement support ( Hewison et al. , 2020 ). Furthermore, recent evidence has highlighted the need for a family centered and online approach for bereavement support ( Harrop et al. , 2020 ). This paper provides a detailed description of the stages of development of the Families and Friends in Bereavement intervention including piloting. Aims The aims of the study were to: 1. Co-produce a web-based intervention with patient and public contributors (PPI) and bereavement professionals, theoretically informed by the family level extension Dual Process Model and Family Sense of Coherence. 2. Pilot the intervention and gain user feedback to inform refinements. 3. Evaluate the intervention capturing users’ experiences of accessibility, acceptability, usability and utility in readiness for adoption and implementation. Findings from the evaluation (aim 3) will be published in a forthcoming paper. Methods Study design Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence ( Antonovsky & Sourani, 1988 ) and the family-level extension to the Dual Process Model ( Stroebe & Schut, 2015 ) which were used to develop the family-focused intervention. The co-production approach ( Grindell et al. , 2022 ) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” ( Goodyear-Smith et al. , 2015 ) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and death related studies ( Booth et al. , 2021 ; Entilli et al. , 2024 ). The study received endorsement and support from the National Bereavement Alliance (the largest UK umbrella bereavement organization with over 80 member organizations). In consultation with people with lived experience of bereavement (personal and/or professional) and in line with UK palliative and end of life care policy ( National Palliative and End of Life Care Partnership, 2021 ), we defined family as relatives, friends, neighbors or anyone important to the bereaved. This was a mixed methods study. Firstly, we explored in-depth the theoretical framework (Family Sense of Coherence and the family level extension to the Dual Process Model). Secondly, we carried out scoping work of the COVID-19 family-focused bereavement literature published between January 2020 and March 2021. This was specifically to identify and understand key elements of family bereavement support. Thirdly, findings from the scoping work and our theoretical framework were used to inform an online survey to gather data on personal and/or professional experiences of bereavement during the pandemic. Fourthly, the survey findings were taken to an online co-production workshop attended by members of the public with experience of bereavement and bereavement professionals working in hospice bereavement services, frontline and umbrella charities, to co-produce key content for the web-based intervention. Data gathered from the workshop discussion was used by the research team, in collaboration with an expert web designer, to produce and launch the intervention. Fifthly, users of the intervention were invited to provide feedback via a short survey embedded within a web-page of the intervention. Lastly, this feedback informed refinements to the intervention. The process of intervention development (illustrated in Figure 1 ) is described below using the GUIDance for rEporting intervention Development studies in health research (GUIDED) ( Duncan et al. , 2020 ). Whilst GUIDED recommends use of the Template for Intervention Description and Replication (TiDieR) checklist ( Hoffmann et al. , 2014 ) the open accessibility and flexibility of an online intervention precluded specifying the who, how, when, how much, and where of use, therefore this checklist was not used. Figure 1. Study process and timeline. Intervention development phases Theoretical framework Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support. Family support is key to managing bereavement and in our previous work we drew on Family Sense of Coherence as a theoretical lens to facilitate family-focused support ( Duke et al. , 2020 ). Sense of coherence refers to the extent to which individuals perceive their world as meaningful, comprehensible and manageable ( Antonovsky & Sourani, 1988 ). Antonovsky and Sourani advanced sense of coherence by applying the concept to families, demonstrating that successful coping with family stressors is associated with adaptation within the family and wider community networks. For the purpose of the intervention development, we applied the three Family Sense of Coherence constructs to bereavement: defining meaning as wanting to respond and create meaning as a family, comprehensibility as the ability to understand and make sense, and manageability as the ability to utilize available resources to respond to the bereavement ( Figure 2 ). Figure 2. Family Sense of Coherence (applied to bereavement). Stroebe and Schut (2015) expansion of their seminal theory of bereavement to include the collective family response (family level extension to the Dual Process Model) explains family level tasks both loss and restoration focused that relate to adjustment of the family as a whole as well as its individual members. For families to attend to these tasks, adaptation to these at both an individual and family level is required. Together the theoretical framework comprehensively describes the processes required as a family, in both attending to the bereavement and the consequences of the death, in order to make sense, create meaning and utilize available resources to adapt to the loss ( Figure 3 ). Figure 3. The theoretical framework. Scoping work To identify and understand key elements of family bereavement support during COVID-19 we scoped the emerging evidence. This was underpinned by the question: what is known about family experiences of bereavement during the COVID-19 pandemic? Searches were carried out in MEDLINE (EBSCO) CINAHL, Web of Science and PsycINFO using search terms related to “family bereavement” “grief” “loss” and “social support, “coping” and “resilience”. Searches were carried out in March-April 2021 (of literature published between January 2020 to March 2021) and it provided an initial indication of family experience prior to the proliferation of publications regarding bereavement during COVID-19. From the limited evidence on bereavement during COVID-19 available at the time, the papers explored the nature of family experiences and support needs. Twenty-five full papers were screened and data extracted from seven. Experiences : Papers reported guilt and anger experienced by individuals at not being able to bear witness and the disruption to usual death rituals as a result of social restrictions applied during the pandemic ( Fernández & González-González, 2022 ; Hanna et al. , 2021 ; Moore et al. , 2020 ; Pearce et al. , 2021 ), and a universal experience of uncertainty was expressed ( Hanna et al. , 2021 ). Some individuals described a detached experience, a sense of disbelief, and felt unable to grasp the reality of the death ( Borghi & Menichetti, 2021 ; Fernández & González-González, 2022 ). Isolation during the lockdowns led to some feeling that the pandemic had “killed two times over” ( Fernández & González-González, 2022 ; Pearce et al. , 2021 ). First, enforced separations of people from their families before the death, and then secondly by the isolation resulting from the death itself. However, one paper reported benefits for some of the isolation as a result of social restrictions which allowed increased time to grieve independently from others and process the loss ( Borghi & Menichetti, 2021 ). The challenge for families of having to break bad news to other relatives was reported but this could also facilitate breaking the silence and start the process of developing meaning following the death ( Borghi & Menichetti, 2021 ). Furthermore, the need to support other family members in a practical sense required individuals to draw on internal resources and offered a distraction and a sense of purpose ( Borghi & Menichetti, 2021 ). Two papers described how services responded to the pandemic restrictions by adapting their practice and enhanced use of technologies to provide support for families and communicate with them in novel ways ( Fox et al. , 2021 ; Pearce et al. , 2021 ). Support needs : Papers described the empathetic response of services including widening of access, willingness to adapt ( Borghi & Menichetti, 2021 ; Fernández & González-González, 2022 ; Fox et al. , 2021 ; Moore et al. , 2020 ), and developing creative use of technology to provide support ( Borghi & Menichetti, 2021 ; Fernández & González-González, 2022 ; Fox et al. , 2021 ; Moore et al. , 2020 ; Pearce et al. , 2021 ). Communication from professionals to families was considered essential ( Hanna et al. , 2021 ; Moore et al. , 2020 ). In particular, communication that was empathetic and provided clear and consistent information was valued ( Hanna et al. , 2021 ). Misinformation or mixed messages regarding public health or safety information contributed to family distress ( Moore et al. , 2020 ). Online survey The online survey was informed by the scoping work and focused on experiences of people who had been bereaved and the theoretical framework we applied. Survey items addressed family experiences of bereavement during COVID-19; views on supporting family bereavement via a web-based intervention and collected demographic data from respondents (see Table 1 for key questions, responses were unlimited free text). Table 1. Key survey questions. Experiences Question underpinned by: It is recognized that bereavement is a stressful life event and families and family members may react in different ways. Family tasks in bereavement have been described as including sharing experiences of grief; caring and supporting each other; and sharing memories but this will not be the case for all families. Please tell us if these examples reflect your experience, either as a bereaved person or bereavement professional. If you have different examples, please also tell us about these. Family level extension to the Dual Process Model We know that bereavement is influenced by factors such as witnessing good care for a dying family member, being able to provide comfort, being present with the dying person and with those important to us and the dying person and by marking their death with others in funerals and other social gatherings. From your experience, what has been the impact of the COVID-19 pandemic on bereavement? Scoping work Has the pandemic offered any opportunities to express grief or support for the bereaved in alternative ways? Scoping work From your experience, are there things that helped your family / help families make sense of a bereavement? Family Sense of Coherence – Meaning + Comprehensibility From your experience, are there things that helped your family / help families manage a bereavement? Family Sense of Coherence – Manageability From your experience, how do you think the ongoing COVID-19 social restrictions have impacted bereavement in a family context (positive or negative)? Scoping work Developing a web (online) resource to support family bereavement From your experience, what do you think about providing family bereavement support via a web (online) resource? When developing a resource to support family bereavement what kinds of things would be helpful regarding content and format? (e.g. an information page on grief and how it should be presented) How could the resource encourage a family/social/collective response to bereavement? How could the resource help ease the social isolation imposed by COVID-19 or that can be experienced at other times? Please tell us if you have any experience of web (online) bereavement support resources. If so, please provide examples and say what did you liked and what you did not like about them? In your experience what would encourage you to use a web (online) resource? e.g. colors, images, being interactive Please use the box below to tell us about anything else you think is important to consider when developing the web (online) resource. The online survey was piloted via distribution to seven patient and public contributors (PPI) and two bereavement organizations in February 2021. Three PPI contributors and one representative of a bereavement organization responded (n=4). Changes to language and terminology to improve clarity were made following these pilot responses. The survey was distributed via the National Bereavement Alliance; Hospice UK; a large national patient and public involvement network; and social media. It ran for three months between April and July 2021 using Microsoft Forms. Thirty-two responses were received with an average completion time of 32 minutes. Thirteen completed the survey from a professional perspective, 12 from a professional and personal perspective, and the remaining seven from a personal perspective. Respondents who were bereavement professionals (those with professional experience), or those with both professional and personal experience reported working in health care, including hospices (n=19); third sector (n=4) and other (n=4) which included private and digital technology sectors. One respondent did not provide details. They worked in a range of roles, with varying levels of seniority and length of experience. Demographic information for bereaved respondents (those with personal experience, or those with both personal and professional experience) is provided in Table 2 . Table 2. Characteristics of bereaved survey respondents. About you – if you have been bereaved (if you are completing the survey based on personal experiences n=19) Age 40-49 1 50-59 7 60-69 7 70-79 3 80+ 1 Sex Female 18 Male 1 Relationship to the person who died (*1 missing response, total greater than 18 as includes multiple bereavements) Daughter/son 6 Spouse/partner 4 Sibling 2 Friend 3 Parent 2 Aunt/uncle 1 Niece/nephew 1 Daughter/son 6 Spouse/partner 4 What was your bereavement the result of? COVID-19 1 Other injury, condition or illness 16 Both (COVD-19 and other illness/condition/injury) 2 How long have you been bereaved? 1-6 months 7 7-12 months 3 1-2 years 4 2 years + (other bereavements prior to COVID-19) 5 Data analysis Survey results were analyzed using Framework Analysis ( Ritchie et al. , 1994 ) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group. Results Family tasks in bereavement Findings demonstrated that family tasks in bereavement included managing practicalities around the death including organizing the funeral and sorting the estate, living with the loss and learning to adapt, and acknowledging that family members experience and move through grief in different ways utilizing a variety of coping strategies. …Family tasks have been interrupted due to COVID - for example not being able to meet to care and support each other, to talk about the loved one, to go through possessions and keep sakes, to sort out the affairs of the loved ones etc. - this has all been difficult due to family members not being able to mix, to go indoors etc. It was also hard at the funeral having to be socially distanced and not able to talk with and hug family members. At the same time, it was amazing we had over 1000 people watch the live streamed/recorded funeral service for my dad… (Participant 08, personal and professional) …I found that my siblings and myself all had different grief stages and experiences when our parents died (Dad then Mum a few months later), and we did not really support each other as we were at different stages. We also had different ways of coping and this caused issues (i.e. drinking heavily)… (Participant 17, personal) Impact of COVID-19 COVID-19 impacted bereavement in a number of ways. For example, feelings of guilt, an inability to bear witness, putting grief on hold as a result of the imposed lockdowns, and the impact of media reporting of daily death tolls led to feelings of their loss being seen ‘as just a number’. Isolation resulting from social restrictions resulted in lack of control and choice over mourning including an inability to share collective memories and undertake cultural rituals and rites of passage usually enacted by a death. …Instances where the family have not been able to be present have caused increases in distress and have factored into the complexity of feelings that must be managed in grief. Bereaved people being more often alone and isolated also adds more space for rumination. Having said this, I think many bereaved families have created support bubbles, moved in together, or just elected to ignore some restrictions for the greater good of caring for one another. Frequent phone calls and virtual meetings have also been prevalent… (Participant 05, professional) …Due to rapid deterioration often experienced, these [COVID] deaths have not been good and are not seen as good deaths at the time as people close to the patient don’t have time to process what’s happening. The restrictions on funeral numbers have been particularly challenging especially for some cultures who would normally have had large gatherings as a result of death… (Participant 06, professional) …For some it has a negative impact due to limited support networks and opportunities for meaningful activity as a distraction etc., but for others there can have a positive impact as pace of life has slowed down, people are at home more, etc… (Participant 18, professional) …I feel that I wasn’t able to give him the celebration in life he deserved in the final weeks as friends and family could not visit. I do not feel that I was able to give him the funeral he deserved because of restrictions in numbers. Everyday there was a change in government restrictions. The three weeks in planning were a nightmare. I was able to have a pretty pathetic excuse for a Wake. I feel I failed him, but my friends and family say I did all I could under the restrictions… (Participant 21, personal) …We are left with thinking we ‘should’ have another remembrance event, with an expectation from people who couldn’t be there, but this just feels stressful. Had we had a ‘normal’ funeral, then this would be over, and no one would expect another event. My friends didn’t visit me in a way that I suspect they would have done pre pandemic. I received lots of text/WhatsApp messages, but few people actually picked up the phone and called me which I really wanted. I felt very isolated and as if it had to be me that contacted people, but I just couldn’t… (Participant 22, personal) …Humans are social, we grieve together, and our grief is healed by being with others who understand. Despite restrictions being all but gone, people are still out of step with seeing each other. Their support networks have shrunk… (Participant 31, professional) Survey analysis confirmed findings from the scoping review that the pandemic presented opportunities to express grief and support the bereaved in different ways. Technology was utilized in novel and diverse ways both by professionals and the bereaved to enable social connections and facilitate support, this included online streaming of funerals and increased use of digital platforms. For some the social restrictions were viewed positively, such as smaller scale funerals and protected time to grieve. …Live streaming the funeral - it gave the opportunity for many more people to attend than we would ever of (sic) had in person. We also have a recording of the service as a memory and have looked back at it on several occasions… (Participant 08, personal and professional) …I think it has given people space and an “excuse” to not be sociable - and take more time in their grief. I think for most, the pandemic has shown them who is really important and who is really there for them… (Participant 12, professional) …Virtual meeting has meant that miles are no object in being able to have conversations with support people (friends and family). It’s not the same as meeting in person, but there are some people I couldn’t have had contact with otherwise… (Participant 28, personal) Making sense and managing bereavement Respondents identified factors that helped make sense of and manage bereavement. Having information and guidance about the practical tasks that needed to be taken following a death was felt to be essential. Information on the emotional impact of grief, how it can affect families and the diversity and commonality of experience was equally necessary. Being able to relocate the person who had died within the family context and ensure an ongoing bond was considered important in helping to adapt to the loss. The ability to draw on support networks, share stories to help make sense of the death, and having time to reflect as well as legacy projects to remember and honor the dead were also valued. …Mostly support from other members of the family and people who shared memories and good times with the departed, talking about the condition and how we were or were not able to intervene and make a difference for our loved one… (Participant 32, personal and professional) Accessibility, usability and utility of a web-based intervention The idea of a web-based intervention was positively viewed and acknowledged as a means to widening access. However, it was recognized that this was reliant on possessing some level of IT literacy. To ensure accessibility respondents desired ease of navigation, and succinct information utilizing varied media (images and music). Regarding content, information on the experience and range of manifestations of grief, signposting to other organizations and support, and information on how to support one another were deemed important. Respondents thought, for the intervention to facilitate a family response to grief, it should include questions and prompts for conversations and activities for capturing and sharing memories and feelings. Respondents offered suggestions for encouraging use of the intervention, these included images, use of colors, and avoidance of clichés. Essentially the intervention should be simple, straightforward and honest, relatable, and clear in what it adds and how it differs from existing resources. …It would be helpful to have sections on emotional support - what kind of things people need and how to get them, links to relevant organizations, and practical support on how to face tackling the things you have to do because the person has died. Also, some ideas, both for the bereaved person and those supporting them of things they might be able to do to help them feel a bit better. For example, a friend gave me a bag of ‘crap day’ presents, so if I was having a particularly awful day, I could open one. I’ve done that for other friends since, and it was something I really valued as it reminded me that my friend was supporting me even at the worst times. Other ideas of activities that allow people to talk about their loved one without feeling awkward would be helpful… (Participant 28, personal) Co-production workshop Participants were sought through respondents to the survey (who were asked to indicate their interest in the workshop), social media e.g., Twitter, patient and public involvement networks, professional bereavement organizations, and carers’ organizations. Twelve individuals expressed an interest to participate, eight were able to attend on the date set, with five attending on the day (one was unwell, one had technical issues and one had unanticipated work pressures on the day). The two-hour online workshop (via Microsoft Teams) was held in September 2021. Of the five participants, one was a person with lived experience, one was representative of a carers’ organization, two were from hospice bereavement services (one professional and one volunteer) and was one from a bereavement organization. The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content by developing materials for a dedicated webpage entitled ‘ a space to pause’ which includes art and music to facilitate taking time away from grief. The aim of the workshop was to co-produce the content of the intervention. To do so the research team provided an overview of the study, presented findings from the survey, and discussed potential content including family ‘activities’ to stimulate family interactions and communication describing how these linked to the study’s theoretical underpinnings. It was explained that the survey had endorsed the following content: a landing page – what the web-resource is about (the unique selling point of the resource); about grief – outlining the range of experience; dealing with practicalities; what to say (or not); and links to other sources of information and advice (for specific types of bereavement). However, the focus of the co-production discussion was on the theoretical underpinning of the intervention (and why this helps to support family bereavement), views on a reflective zone consisting of music and art, and family ‘activities’ to aid support. An outline of the theoretical framework was presented and participants endorsed its value and their understanding in relation to family bereavement. They wanted the theoretical underpinning to be available on the intervention site to show users the robust foundations of the intervention, as well as the links between the family ‘activities’ and theory. Workshop participants supported the value of art (and music) in aiding ‘time out’ from considering bereavement, rather than necessarily aiding reflection. For some the images and music encouraged a sense of calm and mindfulness. Nonetheless, it was recognized that art preferences are individual and therefore there was support for maximizing options such as the ability to look at different visual images, with or without music. The mainstay of the discussion revolved around potential family ‘activities’ of which three (mapping family networks, creating a family repository of memories, and questions to support families to talk together) were presented to the participants. For each activity the participants were asked to consider whether it made sense to them, if they could see it working with families and others to facilitate communication, and finally what changes they would suggest. I. Mapping family networks (Family Sense of Coherence – Manageability ) Participants supported asking intervention users to consider who is in their family network, then using this to identify the strengths and coping strategies of those identified, including the benefits of each relationship, and what effect the bereavement has had on each member of the network. Participants suggested completed exemplars of family maps would be useful and that one exemplar should be for an individual with limited family (i.e. representing the diversity of family and social networks such as neighbors/friends not just kin). …Family mapping might be quite useful to encourage people to think, oh yes, I can see how I could put members of my family on a piece of paper and I can see how it works…, by just putting one or two little examples. And I think I personally would feel confident enough to continue and do the task if I had that…. (Hospice bereavement service provider – volunteer) …If several family members actually drew this map separately and then sort of brought them together… You could have a think about it and see how similar or different they were and that might help people to understand that each person’s family maps are different even though they’re in the same group….” (Hospice bereavement service provider – professional) II. Creating a family repository of memories (Family Sense of Coherence – Meaning ) The workshop participants felt that encouraging families to create collections of memories and stories was important. With the increasing use of and familiarization with technology during the pandemic, there was recognition that this did not need to be a physical collection. Instead, digital memorialization such as legacy walls were viewed as a sharing innovation developed through COVID-19 which could be shared with distant family members in other countries. …Encouraging each individual to supply something that they feel is important to remember the person…” (Hospice bereavement service provider – volunteer) “…Whether it’s a physical or a digital thing… if families are overseas for example, or the things that people want to keep are of a particular nature that might make it easier for them to be digitized for sharing… I do think that there’s a place for both of those things… (Hospice bereavement service provider – professional) III. Questions to help families talk together (Family Sense of Coherence – Meaning , Comprehensibility and Manageability ) The questions in Table 3 were taken to the workshop as suggestions linked to the theoretical constructs of Family Sense of Coherence to aid family coping via creating meaning, sense making, and the management of resources. The person with lived experience, and representative of a carers’ organization liked the questions but suggested some shortening of wording and refinements to more everyday language. Table 3. Questions to help families and friends talk together (linked to the Family Sense of Coherence constructs). Meaning What did they mean to you? What do you miss most about them? Is there anything you won’t miss? What will you always remember? What are you finding hardest? Is there anything that helps with this? How has the bereavement led to relationship changes - within the family or between some family members? If they were sitting next to you, what would you want to say to them? Is there anything you wished you had or had not said? Sense making (Comprehensibility) Have you talked about the death itself? What went well or not so well? If you haven’t talked, is there a reason for this? Have you talked to any health and care workers involved? Has anyone in the family had any feedback that has helped to make sense of things? Manageability How can you help each other? What are the different strengths of family members that could be used now? Have you noticed people taking on new or changed roles? What other sources of support could you draw on as a family? Are you keeping to usual family routines, or have you created new ones? How do you want others in the family to relate to you? Bereavement service participants also liked the questions as prompts to start and encourage families to talk together. …I liked the prompts. The questions that you asked or suggested for families to think about, and I particularly like the fact that you’ve included some balance in there. You know that actually acknowledgement that there may be things that you won’t miss and there might be things that you wish had been different and that might vary between family members… that actually sometimes there is a sense of relief when someone dies, particularly if they’ve suffered, or if the relationships been very difficult, perhaps towards the end or long term, and it’s something that often people feel very guilty for admitting that they feel anything but sadness… So relief, maybe even anger… We know that those are normal parts of grieving, and I wonder if perhaps some questions that just give permission for people to speak about those feelings that they feel a little bit taboo… (Hospice bereavement service provider – professional) It was suggested that using prompts to explore secondary losses as a result of the bereavement would be of value too: …Secondary losses that you might have as a result, you might want to explore that a little bit. So if there’s been an additional loss because that person has died, so perhaps somebody has had to move house or they’ve had to move the communities. They’re not just losing their loved one… (Bereavement organization participant) Following the workshop, the research team further developed the content of the respective webpages and their format/appearance (addressing all the suggestions highlighted above) based on feedback from the workshop. The expert web designer then implemented these, followed by a cycle of amendments. The web-based intervention was then launched to coincide with National Grief Awareness Week (2-8 December 2021) following an invitation from the National Bereavement Alliance to publicize and demonstrate the intervention at their monthly webinar the previous week. Feedback phase Feedback on the intervention was invited through a dedicated page on the pilot website. Respondents were asked to complete a questionnaire via Microsoft Forms between December 2021 and January 2022. A total of 13 anonymous responses were returned. Bereavements were reported as resulting from COVID-19 (n=1); COVID-19 alongside other illness (n=2), other illnesses (n=8) and two did not provide details of the cause of death. Bereavement related to both family members and friends. A further nine respondents (six professionals, two bereaved and one bereaved professional) contacted the research team via email rather than completing the feedback form. Additional feedback was provided from 18 participants when the intervention was presented at a national bereavement webinar. Comments were positive and constructive, and those supporting the bereaved highlighted the family activities as being something they would use with clients. Questions related to accessibility, acceptability, usability and perceived benefits of the resource. A summary of key responses is provided below in Table 4 . Table 4. Summary of feedback from pilot website. Positive comments Suggestions for further consideration Accessibility The resource is easy to use, and no new skills are required to use the resource The ‘Evidence Used’ page would be better situated towards the end of the resource rather than at the beginning. “…I think the 'Evidence' section could be made a bit clearer…” (Bereaved person) Some of the website content is too dense, risks information overload and language is too academic in places. “…Pages are very wordy. It would be better to have sub sections to be less overwhelmed by blocks of text…” (Bereaved person) Acceptability The ‘Dealing with practicalities’ page is helpful The ‘Space to pause’ page is novel but need to recognize may not be to everyone’s liking. A warning needs to be included regarding accessing this page in a public space due to it containing sound Colors are appropriate, calming and inviting. Use of graphics and bullet points would help to break up dense text. Resource is accessible and can be used flexibly by the user. Further contacts page is helpful but further suggestions of additional organizations to include were offered. ‘Family activities’ page is novel and helpful, although may not be something all users might embrace. “…I liked the look of the exercises. I am glad that you provided some examples. That makes it feel very achievable to complete the task.. ” (Bereavement professional) “…We had circled around some of the ideas previously, but this was helpful to focus our thoughts and energies…” (Bereaved person) Include information about pre bereavement and suggestions for how to start a conversation with others “…In my experience it is the person who has the direct connection who often needs the most support. They are not open to talking about their grief in the first place, so it would be nice to have more on starting a conversation…” (Bereaved person) Usability Navigating the resource is largely straightforward and simple to do. “…I really, really like it and wish that more websites followed your example. It is utterly straightforward and the common top bar for all pages makes navigating the site refreshingly simple…” (Bereaved person) Page headings require clearer description Benefits Resource is helpful for providing support for both new and previous bereavements. “…I will be talking about the resource with others. I think that if people are aware of the resource from when the death occurs, they can access it at a point which is right for them… I think it is helpful in relation to previous bereavements…” (Bereaved person/ bereavement professional) Refinement of the web-based intervention Following analysis of the feedback, the first cycle of iterative changes was undertaken. Webpages were condensed, so that a separate page on ‘ how to support each other’ was removed, with the information incorporated into the ‘ about grief’ page. The standalone ‘ activities to support grief’ page was added to the ‘ home’ page, to emphasize the intervention’s unique focus and content. A new page was inserted called ‘ bereavement during COVID’ which drew on the survey findings to outline personal experiences of bereavement during the pandemic (including the positive developments that occurred). Text refinements were made to all webpages to break-up sections of text using images and edited for succinctness. In terms of appearance the font size across the site was increased to enhance readability. Discussion This paper reports on a study to co-produce a theoretically informed web-based intervention to support family and friends’ bereavement. The intervention was developed during COVID-19 as a resource to bridge an existing gap in bereavement support that became apparent during the social restrictions at the time. Our findings showed that the pandemic impacted bereavement in a variety of ways. Participants felt unable to prepare for the death of the person because of enforced separations, guilt at being unable to bear witness, or participate in goodbye rituals. There was a sense of disbelief and for some disconnection to the extent it was like “the person [who] was like the glue in the cracked pot was no longer there”(Participant 15, personal and professional). The disruption to these inherently important customs resulted in a loss of agency ( Vieveen et al. , 2023 ) and powerlessness for families and friends who were prevented from participating in the care of their relative or being present as end of life approached. This combined with a lack of connectedness with usual support networks resulted in disruption to the meaning-making process to enable families and friends to understand and make sense of the death. Meaning-making has been shown to be essential to bereavement in terms of wellbeing, resilience and emotionally adjusting to the loss ( Barboza et al. , 2022 ; Breen et al. , 2019 ; Cardoso et al. , 2020 ). Being able to attribute meaning to a death also enables the bereaved to reconstruct bonds with the deceased ( Rothaupt & Becker, 2007 ) and begin to move forward with their lives following an unwanted and unexpected life transition ( Fuchs, 2018 ; Shear, 2012 ). The COVID-19 pandemic prevented many families and friends from accessing and assimilating the ‘active ingredients’ of meaning-making and threatened their capacity to experience the meaning of a death ( Derkx et al. , 2020 ). Findings from our study demonstrated the importance placed on the exchange of experiences with others within their social network and highlighted the need to discuss feelings and emotions in order to make sense of the death, regain a level of control in their lives, and “hold on to things differently” ( Vieveen et al. , 2023 ). They also highlighted the use of technology to enable social connections and facilitate support online at a time when this was prohibited face to face. It is in response to these insights that the Families and Friends in Bereavement intervention was co-produced. However, while the web-resource was developed during COVID-19 the content is designed to ensure ongoing relevance and legacy beyond this specific context. The intervention is novel in shifting the professional gaze of bereavement to one that strengthens a social response to grief through family, friends and social networks. While every bereavement is experienced individually the intervention promotes ways to understand, make meaning and manage the bereavement collectively. While family relationships can add complexity to meaning-making in the grief process, they have also been shown to provide an invaluable resource for dealing with it ( Kissane et al. , 2008 ). Activities offered within the intervention stimulate social interactions and encourage communication to enable users to consider the strengths of their network and how reciprocal support may be realized. In doing so, the loss of agency experienced during the death of the person can be re-gained as the web-resource offers a mechanism for agency in the bereavement process through flexibility in how it can be used and engaged with. Feedback obtained during intervention development and piloting has indicated that it is accessible, acceptable, usable and importantly has value and benefit. We have since undertaken a qualitative evaluation utilizing semi-structured interviews and focus groups. Evaluation data informed a second cycle of refinements to develop the final version of the self-guided intervention. This is now publicly available at: Families and Friends in Bereavement . Work to encourage further adoption and spread is on-going. This includes discussion and promotion with the funeral industry and national charitable organisations. Strengths and limitations An important strength of this study is the combined use of the Family Sense of Coherence ( Antonovsky & Sourani, 1988 ) and the family level extension to the Dual Process Model ( Stroebe & Schut, 2015 ) which have provided a robust framework for data collection, analysis and intervention development. The explicit use of the theoretical framework identified key constructs and mechanisms to guide our focus and informed the content of the intervention. A further strength is the use of co-production to develop the intervention. We approached the study from the position that those who are affected by the research and potential users of its outputs have experiences and knowledge that can offer invaluable insights to inform understanding. By drawing on the views and experiences of those who are bereaved, and bereavement professionals who support them, has ensured the intervention has relevance and utility for those it seeks to support. As with all studies there are limitations. It might be argued that the scoping work undertaken was partial. At the time we reviewed the literature, the evidence base on bereavement experience and support needs during COVID-19 was emerging and the plethora of papers which have been published since were not available to us at the time the intervention was under initial development. We recognize that this may be considered a potential limitation but would argue it does not compromise the robustness of the resource due to it being theoretically informed and grounded in real world experience. In addition, literature that has been published subsequently concurs with our findings ( Burrell & Selman, 2022 ; Mayland et al. , 2020 ; Selman et al. , 2021 , 2022 ; Torrens-Burton et al. , 2022 ). Conclusion Families, friends and support networks are essential to managing bereavement. COVID-19 social restrictions prevented families and friends from being with the dying and participating in usual rituals to honor the dead. This resulted in social disconnection, feelings of guilt, and difficulty in making sense of the death and reconstructing relationships. The Families and Friends in Bereavement intervention was developed during the pandemic with the aim of promoting communication and meaning-making, fostering coherence and resilience. However, while designed during COVID-19 the content has continuing relevance beyond this context. We have provided a platform (with family-focused tools) to process the death and family narrative, and begin to make sense of what has happened, and reconstruct bonds and adjust to altered family roles and structure. The web-resource provides a framework to promote meaning-making, comprehensibility and manageability, therefore providing a mechanism to rebuild, reconfigure and begin to glue back the pieces of the cracked family pot. Ethical considerations The study was approved via the Faculty Research Ethics Committee at the University of Southampton (Ethics/ERGO number: 63208). At the start of both the online survey and feedback form on the pilot website respondents had to indicate that they had read and understood the study information sheet, were 18 or over and agreed to take part. Full written consent was obtained for participation in the co-production workshop. Data availability Underlying data The underlying data is not available as study participants consented only to their data being used for the sole purpose of this study and not to sharing for secondary analysis purposes. Extended data OSF: Supporting families and friends bereaved during COVID-19 and beyond. https://doi.org/10.17605/OSF.IO/H6TNX ( Campling, 2023 ). This project contains the following extended data: - Online survey.docx Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0). Acknowledgements The study team are grateful to Mark Livermore who expertly designed and produced the web-based intervention. We would also like to thank artist and musician Cindy Brooks for her contributions to the Space to Pause web-page. References Antonovsky A, Sourani T: Family sense of coherence and family adaptation. J. Marriage Fam. 1988; 50 : 79–92. 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Publisher Full Text Comments on this article Comments (0) Version 2 VERSION 2 PUBLISHED 22 Aug 2023 ADD YOUR COMMENT Comment Author details Author details 1 School of Health Sciences, University of Southampton, Southampton, England, SO17 1BJ, UK 2 Childhood Bereavement Network and National Bereavement Alliance, London, E8 3PN, UK Natasha Campling Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Project Administration, Supervision, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing Susi Lund Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Writing – Original Draft Preparation, Writing – Review & Editing Alison Allam Roles: Conceptualization, Writing – Review & Editing Gail Precious Roles: Investigation, Writing – Review & Editing Michelle Myall Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Project Administration, Supervision, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing Competing interests No competing interests were disclosed. Grant information The initial work to develop the resource was funded by the National Institute for Health and Care Research Applied Research Collaboration Wessex (NIHR ARC Wessex) (Covid small grant: Myall & Campling). The views expressed are those of the authors and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care. Ongoing iteration of the resource has been funded by a University Hospital Southampton research and development grant (GNT0526: Campling & Myall). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Article Versions (2) version 2 Revised Published: 22 Apr 2024, 12:1024 https://doi.org/10.12688/f1000research.134193.2 version 1 Published: 22 Aug 2023, 12:1024 https://doi.org/10.12688/f1000research.134193.1 Copyright © 2024 Campling N et al . This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Download Export To Sciwheel Bibtex EndNote ProCite Ref. Manager (RIS) Sente metrics Views Downloads F1000Research - - PubMed Central info_outline Data from PMC are received and updated monthly. - - Citations open_in_new 0 open_in_new 0 open_in_new SEE MORE DETAILS CITE how to cite this article Campling N, Lund S, Allam A et al. “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.12688/f1000research.134193.2 ) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. COPY CITATION DETAILS track receive updates on this article Track an article to receive email alerts on any updates to this article. TRACK THIS ARTICLE Share Open Peer Review Current Reviewer Status: ? Key to Reviewer Statuses VIEW HIDE Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions Version 1 VERSION 1 PUBLISHED 22 Aug 2023 Views 0 Cite How to cite this report: Finucane A. Reviewer Report For: “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.5256/f1000research.147225.r246498 ) The direct URL for this report is: https://f1000research.com/articles/12-1024/v1#referee-response-246498 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Close Copy Citation Details Reviewer Report 21 Mar 2024 Anne Finucane , The University of Edinburgh, Edinburgh, Scotland, UK Approved with Reservations VIEWS 0 https://doi.org/10.5256/f1000research.147225.r246498 This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be ... Continue reading READ ALL This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Please note the number of survey respondents and workshop participants. A sentence relating to next steps would be a useful addition to the Conclusion. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Is the work clearly and accurately presented and does it cite the current literature? Yes Is the study design appropriate and is the work technically sound? Yes Are sufficient details of methods and analysis provided to allow replication by others? Yes If applicable, is the statistical analysis and its interpretation appropriate? Not applicable Are all the source data underlying the results available to ensure full reproducibility? No source data required Are the conclusions drawn adequately supported by the results? Yes References 1. Gale NK, Heath G, Cameron E, Rashid S, et al.: Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol . 2013; 13 : 117 PubMed Abstract | Publisher Full Text 2. Skivington K, Matthews L, Simpson SA, Craig P, et al.: A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ . 2021; 374 : n2061 PubMed Abstract | Publisher Full Text Competing Interests: No competing interests were disclosed. Reviewer Expertise: Palliative care, psychological support. I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. Close READ LESS CITE CITE HOW TO CITE THIS REPORT Finucane A. Reviewer Report For: “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.5256/f1000research.147225.r246498 ) The direct URL for this report is: https://f1000research.com/articles/12-1024/v1#referee-response-246498 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. COPY CITATION DETAILS Report a concern Author Response 26 Apr 2024 Natasha Campling , School of Health Sciences, University of Southampton, Southampton, SO17 1BJ, UK 26 Apr 2024 Author Response This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype ... Continue reading This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Thank you, we note that you think there are some minor points and possible restructuring to be addressed. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Thank you we have amended the title to include the name of the intervention. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Thank you, the intervention was developed and piloted as outlined in the abstract. It is publicly available at: www.familiesandfriendsinbereavement.org.uk Please note the number of survey respondents and workshop participants. This has been added. A sentence relating to next steps would be a useful addition to the Conclusion. We have clarified in the conclusion that the intervention is live and publicly accessible. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Thank you, this has been removed. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Thank you we have clarified this further in the introduction (paragraph 5). Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Thank you we have now consistently referred to our 'theoretical framework' which draws from both the Family Sense of Coherence and the family extension to the Dual Process Model. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. This has been altered for clarity to 'theoretical framework'. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Thank you this has been moved. Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Thank you this has been altered. Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). Thank you the number of papers have been added but the scoping work was to inform the intervention development and was not intended as a formal scoping review and is therefore not reported as such. I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Thank you we put this as a Table due to the word limit for the journal but as recommended we have altered this in the revised paper. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Thank you see Table 2, questions 2 and 3 which were directly informed by the scoping work focusing on family experiences and support needs. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Thank you the paper was written initially in a traditional format however internal peer review recommended situating the methods and findings of the respective stages together to avoid confusion. We feel that this enhances the flow of the paper and improves the overall narrative. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Thank you we have explained this was a national network, but to ensure anonymity we have avoided further details. In keeping with the above point we have retained the PPI involvement in the respective sections. Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please refer to the point above. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Please see co-production workshop p14. As stated above we feel that information about recruitment, content and facilitation work best here. We acknowledge this is not traditional but for the sake of flow have opted for this approach throughout. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Thank you. For the survey data we have added sub-headings to clarify the themes generated. For the workshop data as we applied Framework Analysis utilising a theoretical lens it was most appropriate for the data to be mapped to the three core constructs of Family Sense of Coherence. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). We have drawn on multiple quotes due to the rich and diverse perspectives – personal, voluntary and professional, and to highlight the diversity and individuality of grief itself. As authors we wanted to ensure their voices were heard and this was imperative to our co-production methodology. The quotes cited build on one another increasing understanding of experience, rather than duplicating. Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. Please refer to our response above re. the narrative flow and format. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. Thank you some practical recommendations could be drawn by readers from Table 5. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Thank you this has been added. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). Please refer to our response re. narrative flow and format. On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Thank you we recognise that this was confusing, we have therefore amended the wording. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Thank you we have amended and updated the paragraph at the end of the discussion. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. Thank you. As our focus, co-production, data collection and analysis was specific to family support we have been cautious not to suggest the transferability of our findings to the development of other online bereavement support interventions. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Thank you. We have provided further information in the paragraph at the end of the discussion section. This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Thank you, we note that you think there are some minor points and possible restructuring to be addressed. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Thank you we have amended the title to include the name of the intervention. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Thank you, the intervention was developed and piloted as outlined in the abstract. It is publicly available at: www.familiesandfriendsinbereavement.org.uk Please note the number of survey respondents and workshop participants. This has been added. A sentence relating to next steps would be a useful addition to the Conclusion. We have clarified in the conclusion that the intervention is live and publicly accessible. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Thank you, this has been removed. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Thank you we have clarified this further in the introduction (paragraph 5). Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Thank you we have now consistently referred to our 'theoretical framework' which draws from both the Family Sense of Coherence and the family extension to the Dual Process Model. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. This has been altered for clarity to 'theoretical framework'. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Thank you this has been moved. Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Thank you this has been altered. Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). Thank you the number of papers have been added but the scoping work was to inform the intervention development and was not intended as a formal scoping review and is therefore not reported as such. I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Thank you we put this as a Table due to the word limit for the journal but as recommended we have altered this in the revised paper. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Thank you see Table 2, questions 2 and 3 which were directly informed by the scoping work focusing on family experiences and support needs. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Thank you the paper was written initially in a traditional format however internal peer review recommended situating the methods and findings of the respective stages together to avoid confusion. We feel that this enhances the flow of the paper and improves the overall narrative. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Thank you we have explained this was a national network, but to ensure anonymity we have avoided further details. In keeping with the above point we have retained the PPI involvement in the respective sections. Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please refer to the point above. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Please see co-production workshop p14. As stated above we feel that information about recruitment, content and facilitation work best here. We acknowledge this is not traditional but for the sake of flow have opted for this approach throughout. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Thank you. For the survey data we have added sub-headings to clarify the themes generated. For the workshop data as we applied Framework Analysis utilising a theoretical lens it was most appropriate for the data to be mapped to the three core constructs of Family Sense of Coherence. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). We have drawn on multiple quotes due to the rich and diverse perspectives – personal, voluntary and professional, and to highlight the diversity and individuality of grief itself. As authors we wanted to ensure their voices were heard and this was imperative to our co-production methodology. The quotes cited build on one another increasing understanding of experience, rather than duplicating. Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. Please refer to our response above re. the narrative flow and format. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. Thank you some practical recommendations could be drawn by readers from Table 5. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Thank you this has been added. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). Please refer to our response re. narrative flow and format. On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Thank you we recognise that this was confusing, we have therefore amended the wording. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Thank you we have amended and updated the paragraph at the end of the discussion. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. Thank you. As our focus, co-production, data collection and analysis was specific to family support we have been cautious not to suggest the transferability of our findings to the development of other online bereavement support interventions. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Thank you. We have provided further information in the paragraph at the end of the discussion section. Competing Interests: None Close Report a concern Respond or Comment COMMENTS ON THIS REPORT Author Response 26 Apr 2024 Natasha Campling , School of Health Sciences, University of Southampton, Southampton, SO17 1BJ, UK 26 Apr 2024 Author Response This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype ... Continue reading This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Thank you, we note that you think there are some minor points and possible restructuring to be addressed. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Thank you we have amended the title to include the name of the intervention. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Thank you, the intervention was developed and piloted as outlined in the abstract. It is publicly available at: www.familiesandfriendsinbereavement.org.uk Please note the number of survey respondents and workshop participants. This has been added. A sentence relating to next steps would be a useful addition to the Conclusion. We have clarified in the conclusion that the intervention is live and publicly accessible. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Thank you, this has been removed. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Thank you we have clarified this further in the introduction (paragraph 5). Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Thank you we have now consistently referred to our 'theoretical framework' which draws from both the Family Sense of Coherence and the family extension to the Dual Process Model. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. This has been altered for clarity to 'theoretical framework'. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Thank you this has been moved. Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Thank you this has been altered. Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). Thank you the number of papers have been added but the scoping work was to inform the intervention development and was not intended as a formal scoping review and is therefore not reported as such. I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Thank you we put this as a Table due to the word limit for the journal but as recommended we have altered this in the revised paper. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Thank you see Table 2, questions 2 and 3 which were directly informed by the scoping work focusing on family experiences and support needs. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Thank you the paper was written initially in a traditional format however internal peer review recommended situating the methods and findings of the respective stages together to avoid confusion. We feel that this enhances the flow of the paper and improves the overall narrative. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Thank you we have explained this was a national network, but to ensure anonymity we have avoided further details. In keeping with the above point we have retained the PPI involvement in the respective sections. Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please refer to the point above. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Please see co-production workshop p14. As stated above we feel that information about recruitment, content and facilitation work best here. We acknowledge this is not traditional but for the sake of flow have opted for this approach throughout. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Thank you. For the survey data we have added sub-headings to clarify the themes generated. For the workshop data as we applied Framework Analysis utilising a theoretical lens it was most appropriate for the data to be mapped to the three core constructs of Family Sense of Coherence. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). We have drawn on multiple quotes due to the rich and diverse perspectives – personal, voluntary and professional, and to highlight the diversity and individuality of grief itself. As authors we wanted to ensure their voices were heard and this was imperative to our co-production methodology. The quotes cited build on one another increasing understanding of experience, rather than duplicating. Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. Please refer to our response above re. the narrative flow and format. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. Thank you some practical recommendations could be drawn by readers from Table 5. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Thank you this has been added. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). Please refer to our response re. narrative flow and format. On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Thank you we recognise that this was confusing, we have therefore amended the wording. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Thank you we have amended and updated the paragraph at the end of the discussion. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. Thank you. As our focus, co-production, data collection and analysis was specific to family support we have been cautious not to suggest the transferability of our findings to the development of other online bereavement support interventions. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Thank you. We have provided further information in the paragraph at the end of the discussion section. This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Thank you, we note that you think there are some minor points and possible restructuring to be addressed. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Thank you we have amended the title to include the name of the intervention. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Thank you, the intervention was developed and piloted as outlined in the abstract. It is publicly available at: www.familiesandfriendsinbereavement.org.uk Please note the number of survey respondents and workshop participants. This has been added. A sentence relating to next steps would be a useful addition to the Conclusion. We have clarified in the conclusion that the intervention is live and publicly accessible. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Thank you, this has been removed. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Thank you we have clarified this further in the introduction (paragraph 5). Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Thank you we have now consistently referred to our 'theoretical framework' which draws from both the Family Sense of Coherence and the family extension to the Dual Process Model. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. This has been altered for clarity to 'theoretical framework'. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Thank you this has been moved. Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Thank you this has been altered. Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). Thank you the number of papers have been added but the scoping work was to inform the intervention development and was not intended as a formal scoping review and is therefore not reported as such. I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Thank you we put this as a Table due to the word limit for the journal but as recommended we have altered this in the revised paper. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Thank you see Table 2, questions 2 and 3 which were directly informed by the scoping work focusing on family experiences and support needs. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Thank you the paper was written initially in a traditional format however internal peer review recommended situating the methods and findings of the respective stages together to avoid confusion. We feel that this enhances the flow of the paper and improves the overall narrative. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Thank you we have explained this was a national network, but to ensure anonymity we have avoided further details. In keeping with the above point we have retained the PPI involvement in the respective sections. Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please refer to the point above. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Please see co-production workshop p14. As stated above we feel that information about recruitment, content and facilitation work best here. We acknowledge this is not traditional but for the sake of flow have opted for this approach throughout. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Thank you. For the survey data we have added sub-headings to clarify the themes generated. For the workshop data as we applied Framework Analysis utilising a theoretical lens it was most appropriate for the data to be mapped to the three core constructs of Family Sense of Coherence. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). We have drawn on multiple quotes due to the rich and diverse perspectives – personal, voluntary and professional, and to highlight the diversity and individuality of grief itself. As authors we wanted to ensure their voices were heard and this was imperative to our co-production methodology. The quotes cited build on one another increasing understanding of experience, rather than duplicating. Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. Please refer to our response above re. the narrative flow and format. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. Thank you some practical recommendations could be drawn by readers from Table 5. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Thank you this has been added. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). Please refer to our response re. narrative flow and format. On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Thank you we recognise that this was confusing, we have therefore amended the wording. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Thank you we have amended and updated the paragraph at the end of the discussion. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. Thank you. As our focus, co-production, data collection and analysis was specific to family support we have been cautious not to suggest the transferability of our findings to the development of other online bereavement support interventions. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Thank you. We have provided further information in the paragraph at the end of the discussion section. Competing Interests: None Close Report a concern COMMENT ON THIS REPORT Views 0 Cite How to cite this report: Entilli L. Reviewer Report For: “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.5256/f1000research.147225.r240907 ) The direct URL for this report is: https://f1000research.com/articles/12-1024/v1#referee-response-240907 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Close Copy Citation Details Reviewer Report 19 Feb 2024 Lorenza Entilli , University of Padova, Padova, Italy Approved with Reservations VIEWS 0 https://doi.org/10.5256/f1000research.147225.r240907 I appreciate the opportunity to review this manuscript, as the topic holds significant importance for clinical practices related to grief. Introduction section: the narrative is notably straightforward and comprehensible. a) the section might ... Continue reading READ ALL I appreciate the opportunity to review this manuscript, as the topic holds significant importance for clinical practices related to grief. Introduction section: the narrative is notably straightforward and comprehensible. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief: - [1],[2],[3] b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL,MMfollowing the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. I trust that the recommendations offered will prove useful in enhancing the impact of the research and its contributions. Is the work clearly and accurately presented and does it cite the current literature? Yes Is the study design appropriate and is the work technically sound? Partly Are sufficient details of methods and analysis provided to allow replication by others? Partly If applicable, is the statistical analysis and its interpretation appropriate? Not applicable Are all the source data underlying the results available to ensure full reproducibility? Yes Are the conclusions drawn adequately supported by the results? Yes References 1. Swartwood RM, Veach PM, Kuhne J, Lee HK, et al.: Surviving grief: An analysis of the exchange of hope in online grief communities. Omega (Westport) . 2011; 63 (2): 161-81 PubMed Abstract | Publisher Full Text 2. Eisma M, Boelen P, Lenferink L: Prolonged grief disorder following the Coronavirus (COVID-19) pandemic. Psychiatry Research . 2020; 288 . Publisher Full Text 3. Walsh F: Loss and Resilience in the Time of COVID-19: Meaning Making, Hope, and Transcendence. Fam Process . 2020; 59 (3): 898-911 PubMed Abstract | Publisher Full Text 4. Döveling K: Online Emotion Regulation in Digitally Mediated Bereavement. Why Age and Kind of Loss Matter in Grieving Online. Journal of Broadcasting & Electronic Media . 2017; 61 (1): 41-57 Publisher Full Text 5. Davidson D, Letherby G: Griefwork online: perinatal loss, lifecourse disruption and online support. Hum Fertil (Camb) . 2014; 17 (3): 214-7 PubMed Abstract | Publisher Full Text 6. Beaunoyer E, Hiracheta Torres L, Maessen L, Guitton MJ: Grieving in the digital era: Mapping online support for grief and bereavement. Patient Educ Couns . 2020. PubMed Abstract | Publisher Full Text 7. Gibson A, Wladkowski SP, Wallace CL, Anderson KA: Considerations for Developing Online Bereavement Support Groups. J Soc Work End Life Palliat Care . 2020; 16 (2): 99-115 PubMed Abstract | Publisher Full Text 8. Lenferink LIM, de Keijser J, Eisma MC, Smid GE, et al.: Treatment gap in bereavement care: (Online) bereavement support needs and use after traumatic loss. Clin Psychol Psychother . 2021; 28 (4): 907-916 PubMed Abstract | Publisher Full Text 9. Robinson C, Pond D: Do online support groups for grief benefit the bereaved? Systematic review of the quantitative and qualitative literature. Computers in Human Behavior . 2019; 100 : 48-59 Publisher Full Text 10. Cipolletta S, Entilli L, Bettio F, De Leo D: Live-Chat Support for People Bereaved by Suicide. Crisis . 2022; 43 (2): 98-104 PubMed Abstract | Publisher Full Text 11. Entilli L, Kõlves K, De Leo D, Cipolletta S: Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction . 2024. 1-11 Publisher Full Text 12. Michael Massimi: Exploring remembrance and social support behavior in an online bereavement support group. research: gate . 2013. Competing Interests: No competing interests were disclosed. Reviewer Expertise: online grief support; traumatic bereavement support; qualitative studies I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. Close READ LESS CITE CITE HOW TO CITE THIS REPORT Entilli L. Reviewer Report For: “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.5256/f1000research.147225.r240907 ) The direct URL for this report is: https://f1000research.com/articles/12-1024/v1#referee-response-240907 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. COPY CITATION DETAILS Report a concern Author Response 22 Apr 2024 Natasha Campling , School of Health Sciences, University of Southampton, Southampton, SO17 1BJ, UK 22 Apr 2024 Author Response Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept ... Continue reading Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief:- [1],[2],[3] Thank you we have added additional references into the introduction specific to the challenges of meaning-making in the context of COVID-19. We have not cited references 1 and 2 as they are concerned with 1. online communities and 2. prolonged grief which have not been the foci of our work. The social disconnection between a dying person and family, caused by social distancing precautions, meant the construction of family narratives of end-of-life was compromised. A review of the international literature, across 13 countries during COVID-19, found that whilst there was diversity of experience based on culture and belief systems all countries identified significant impact on family bereavement (Stroebe & Schut, 2021). Almost half (49%) of respondents to a survey of 2,000 UK adults, carried out by Dying Matters, agreed that being unable to be with someone as they died, or attend their funeral, would make it harder for them to process the death (Penny, 2020) . It is narratives that serve to link the biography of a living family member with the death and which are important in the process of making sense of what has happened, paying tribute to the deceased and in reconstructing bonds between the bereaved and their deceased family member (Klass et al., 2014; Walter, 1996). This meaning-making process is essential for family wellbeing and resilience (Gilbert, 1996), yet it was challenged by the chaos and confusion of the pandemic and variance of COVID-19 control measures (Milner & Echterling 2021). As highlighted by Walsh (2020) during COVID-19 families experienced multiple stressors and needed help to build resilience in their grief, strengthen family bonds, accommodate uncertainty and navigate challenges. Meaning-making processes necessitated shared attempts to make sense of loss, identify previously utilised coping strategies and develop a sense of coherence. b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. Thank you we agree and have removed the brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Thank you we have added recent references. We understand that outlining the benefits and drawbacks of online tools is helpful for the reader to understand the current state of knowledge. However, given the diversity of web-based interventions and the vast literature we consider this would be more appropriate as a standalone review as it would not be possible to do this justice in an introduction. The Families and Friends in Bereavement intervention was developed to encourage users to consider their bereavement experience in the context of family, friends and close social networks, to promote communication and meaning-making, fostering coherence and resilience (McKnight, 2015). Web-based interventions are known to provide effective and accessible psychological support ( Dominguez-Rodriguez et al 2023; Brog et al 2022; Heckendorf et al 2022 ; Cowpertwait & Clarke, 2013; Knowles et al., 2017; Stroebe et al., 2008); and they have the advantage of enabling users to access support when needed, increasing the potential effectiveness of bereavement support (Hewison et al., 2020). Furthermore, recent evidence has highlighted the need for a family centered and online approach for bereavement support (Harrop et al., 2020). Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Our web-based intervention is specific to the 60% of bereaved people who manage their bereavement with the help of family, friends and support networks alone. We state that the intervention is complimentary to other bereavement support and acknowledge certain types of loss particularly those that can result in complex or prolonged grief may require professional intervention. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] Thank you we have added this into the following paragraph. Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family-level extension to the Dual Process Model (Stroebe & Schut, 2015) which were used to develop the family-focused intervention. The co-production approach (Grindell et al., 2022) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” (Goodyear-Smith et al., 2015) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and and death related studies (Booth et al 2021, Entilli et al 2024). b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Whilst resource and time factors were a consideration it was not our intent to achieve data saturation (we felt that this would be impossible due to the individual nature of grief) but the reason for selecting co-production as an approach was to enable the robust underpinning of the web-resource design informed by lived experience. Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. As stated in the paper the survey was distributed via the National Bereavement Alliance; Hospice UK; a large patient and public involvement network; and social media. None of these routes were aligned to or linked to the funders. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? Thank you we have added the following. Survey results were analyzed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group. e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. Thank you for this comment. We made the decision not to include relationship status in the descriptor as it would have been challenging to address this equitably as respondents had personal and/or professional experiences, and for many these were cumulative experiences. Furthermore, our work focuses on a collective (family) approach to grief and the theoretical underpinning of the web-resource (Dual Process Model, family extension) highlights that roles are not static but evolve and new ones develop. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. Thank you. Added references: Booth, J., Croucher, K., & Bryant, E. (2021). Dying to talk? Co-producing resources with young people to get them talking about bereavement, death and dying. Voluntary Sector Review , 12 (3), 333-357. Brog, N. A., Hegy, J. K., Berger, T., & Znoj, H. (2022). Effects of an internet-based self-help intervention for psychological distress due to COVID-19: results of a randomized controlled trial. Internet interventions , 27 , 100492. Entilli, L., Kõlves, K., De Leo, D., & Cipolletta, S. (2024). Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction , 1-11. Heckendorf, H., Lehr, D., & Boß, L. (2022). Effectiveness of an internet-based self-help intervention versus public mental health advice to reduce worry during the COVID-19 pandemic: a Pragmatic, parallel-group, randomized controlled trial. Psychotherapy and psychosomatics , 91 (6), 398-410. Milner, R. J., & Echterling, L. G. (2021). Co-constructing meaning in the time of coronavirus. Journal of Constructivist Psychology , 34 (3), 295-308. Dominguez-Rodriguez, A., Sanz-Gomez, S., González Ramírez, L. P., Herdoiza-Arroyo, P. E., Trevino Garcia, L. E., de la Rosa-Gómez, A., ... & Miaja, M. (2023). The Efficacy and Usability of an Unguided Web-Based Grief Intervention for Adults Who Lost a Loved One During the COVID-19 Pandemic: Randomized Controlled Trial. Journal of Medical Internet Research , 25 , e43839. Walsh, F. (2020). Loss and resilience in the time of COVID‐19: Meaning making, hope, and transcendence. Family process , 59 (3), 898-911. Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief:- [1],[2],[3] Thank you we have added additional references into the introduction specific to the challenges of meaning-making in the context of COVID-19. We have not cited references 1 and 2 as they are concerned with 1. online communities and 2. prolonged grief which have not been the foci of our work. The social disconnection between a dying person and family, caused by social distancing precautions, meant the construction of family narratives of end-of-life was compromised. A review of the international literature, across 13 countries during COVID-19, found that whilst there was diversity of experience based on culture and belief systems all countries identified significant impact on family bereavement (Stroebe & Schut, 2021). Almost half (49%) of respondents to a survey of 2,000 UK adults, carried out by Dying Matters, agreed that being unable to be with someone as they died, or attend their funeral, would make it harder for them to process the death (Penny, 2020) . It is narratives that serve to link the biography of a living family member with the death and which are important in the process of making sense of what has happened, paying tribute to the deceased and in reconstructing bonds between the bereaved and their deceased family member (Klass et al., 2014; Walter, 1996). This meaning-making process is essential for family wellbeing and resilience (Gilbert, 1996), yet it was challenged by the chaos and confusion of the pandemic and variance of COVID-19 control measures (Milner & Echterling 2021). As highlighted by Walsh (2020) during COVID-19 families experienced multiple stressors and needed help to build resilience in their grief, strengthen family bonds, accommodate uncertainty and navigate challenges. Meaning-making processes necessitated shared attempts to make sense of loss, identify previously utilised coping strategies and develop a sense of coherence. b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. Thank you we agree and have removed the brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Thank you we have added recent references. We understand that outlining the benefits and drawbacks of online tools is helpful for the reader to understand the current state of knowledge. However, given the diversity of web-based interventions and the vast literature we consider this would be more appropriate as a standalone review as it would not be possible to do this justice in an introduction. The Families and Friends in Bereavement intervention was developed to encourage users to consider their bereavement experience in the context of family, friends and close social networks, to promote communication and meaning-making, fostering coherence and resilience (McKnight, 2015). Web-based interventions are known to provide effective and accessible psychological support ( Dominguez-Rodriguez et al 2023; Brog et al 2022; Heckendorf et al 2022 ; Cowpertwait & Clarke, 2013; Knowles et al., 2017; Stroebe et al., 2008); and they have the advantage of enabling users to access support when needed, increasing the potential effectiveness of bereavement support (Hewison et al., 2020). Furthermore, recent evidence has highlighted the need for a family centered and online approach for bereavement support (Harrop et al., 2020). Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Our web-based intervention is specific to the 60% of bereaved people who manage their bereavement with the help of family, friends and support networks alone. We state that the intervention is complimentary to other bereavement support and acknowledge certain types of loss particularly those that can result in complex or prolonged grief may require professional intervention. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] Thank you we have added this into the following paragraph. Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family-level extension to the Dual Process Model (Stroebe & Schut, 2015) which were used to develop the family-focused intervention. The co-production approach (Grindell et al., 2022) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” (Goodyear-Smith et al., 2015) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and and death related studies (Booth et al 2021, Entilli et al 2024). b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Whilst resource and time factors were a consideration it was not our intent to achieve data saturation (we felt that this would be impossible due to the individual nature of grief) but the reason for selecting co-production as an approach was to enable the robust underpinning of the web-resource design informed by lived experience. Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. As stated in the paper the survey was distributed via the National Bereavement Alliance; Hospice UK; a large patient and public involvement network; and social media. None of these routes were aligned to or linked to the funders. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? Thank you we have added the following. Survey results were analyzed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group. e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. Thank you for this comment. We made the decision not to include relationship status in the descriptor as it would have been challenging to address this equitably as respondents had personal and/or professional experiences, and for many these were cumulative experiences. Furthermore, our work focuses on a collective (family) approach to grief and the theoretical underpinning of the web-resource (Dual Process Model, family extension) highlights that roles are not static but evolve and new ones develop. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. Thank you. Added references: Booth, J., Croucher, K., & Bryant, E. (2021). Dying to talk? Co-producing resources with young people to get them talking about bereavement, death and dying. Voluntary Sector Review , 12 (3), 333-357. Brog, N. A., Hegy, J. K., Berger, T., & Znoj, H. (2022). Effects of an internet-based self-help intervention for psychological distress due to COVID-19: results of a randomized controlled trial. Internet interventions , 27 , 100492. Entilli, L., Kõlves, K., De Leo, D., & Cipolletta, S. (2024). Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction , 1-11. Heckendorf, H., Lehr, D., & Boß, L. (2022). Effectiveness of an internet-based self-help intervention versus public mental health advice to reduce worry during the COVID-19 pandemic: a Pragmatic, parallel-group, randomized controlled trial. Psychotherapy and psychosomatics , 91 (6), 398-410. Milner, R. J., & Echterling, L. G. (2021). Co-constructing meaning in the time of coronavirus. Journal of Constructivist Psychology , 34 (3), 295-308. Dominguez-Rodriguez, A., Sanz-Gomez, S., González Ramírez, L. P., Herdoiza-Arroyo, P. E., Trevino Garcia, L. E., de la Rosa-Gómez, A., ... & Miaja, M. (2023). The Efficacy and Usability of an Unguided Web-Based Grief Intervention for Adults Who Lost a Loved One During the COVID-19 Pandemic: Randomized Controlled Trial. Journal of Medical Internet Research , 25 , e43839. Walsh, F. (2020). Loss and resilience in the time of COVID‐19: Meaning making, hope, and transcendence. Family process , 59 (3), 898-911. Competing Interests: No competing interests were disclosed. Close Report a concern Respond or Comment COMMENTS ON THIS REPORT Author Response 22 Apr 2024 Natasha Campling , School of Health Sciences, University of Southampton, Southampton, SO17 1BJ, UK 22 Apr 2024 Author Response Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept ... Continue reading Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief:- [1],[2],[3] Thank you we have added additional references into the introduction specific to the challenges of meaning-making in the context of COVID-19. We have not cited references 1 and 2 as they are concerned with 1. online communities and 2. prolonged grief which have not been the foci of our work. The social disconnection between a dying person and family, caused by social distancing precautions, meant the construction of family narratives of end-of-life was compromised. A review of the international literature, across 13 countries during COVID-19, found that whilst there was diversity of experience based on culture and belief systems all countries identified significant impact on family bereavement (Stroebe & Schut, 2021). Almost half (49%) of respondents to a survey of 2,000 UK adults, carried out by Dying Matters, agreed that being unable to be with someone as they died, or attend their funeral, would make it harder for them to process the death (Penny, 2020) . It is narratives that serve to link the biography of a living family member with the death and which are important in the process of making sense of what has happened, paying tribute to the deceased and in reconstructing bonds between the bereaved and their deceased family member (Klass et al., 2014; Walter, 1996). This meaning-making process is essential for family wellbeing and resilience (Gilbert, 1996), yet it was challenged by the chaos and confusion of the pandemic and variance of COVID-19 control measures (Milner & Echterling 2021). As highlighted by Walsh (2020) during COVID-19 families experienced multiple stressors and needed help to build resilience in their grief, strengthen family bonds, accommodate uncertainty and navigate challenges. Meaning-making processes necessitated shared attempts to make sense of loss, identify previously utilised coping strategies and develop a sense of coherence. b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. Thank you we agree and have removed the brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Thank you we have added recent references. We understand that outlining the benefits and drawbacks of online tools is helpful for the reader to understand the current state of knowledge. However, given the diversity of web-based interventions and the vast literature we consider this would be more appropriate as a standalone review as it would not be possible to do this justice in an introduction. The Families and Friends in Bereavement intervention was developed to encourage users to consider their bereavement experience in the context of family, friends and close social networks, to promote communication and meaning-making, fostering coherence and resilience (McKnight, 2015). Web-based interventions are known to provide effective and accessible psychological support ( Dominguez-Rodriguez et al 2023; Brog et al 2022; Heckendorf et al 2022 ; Cowpertwait & Clarke, 2013; Knowles et al., 2017; Stroebe et al., 2008); and they have the advantage of enabling users to access support when needed, increasing the potential effectiveness of bereavement support (Hewison et al., 2020). Furthermore, recent evidence has highlighted the need for a family centered and online approach for bereavement support (Harrop et al., 2020). Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Our web-based intervention is specific to the 60% of bereaved people who manage their bereavement with the help of family, friends and support networks alone. We state that the intervention is complimentary to other bereavement support and acknowledge certain types of loss particularly those that can result in complex or prolonged grief may require professional intervention. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] Thank you we have added this into the following paragraph. Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family-level extension to the Dual Process Model (Stroebe & Schut, 2015) which were used to develop the family-focused intervention. The co-production approach (Grindell et al., 2022) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” (Goodyear-Smith et al., 2015) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and and death related studies (Booth et al 2021, Entilli et al 2024). b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Whilst resource and time factors were a consideration it was not our intent to achieve data saturation (we felt that this would be impossible due to the individual nature of grief) but the reason for selecting co-production as an approach was to enable the robust underpinning of the web-resource design informed by lived experience. Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. As stated in the paper the survey was distributed via the National Bereavement Alliance; Hospice UK; a large patient and public involvement network; and social media. None of these routes were aligned to or linked to the funders. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? Thank you we have added the following. Survey results were analyzed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group. e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. Thank you for this comment. We made the decision not to include relationship status in the descriptor as it would have been challenging to address this equitably as respondents had personal and/or professional experiences, and for many these were cumulative experiences. Furthermore, our work focuses on a collective (family) approach to grief and the theoretical underpinning of the web-resource (Dual Process Model, family extension) highlights that roles are not static but evolve and new ones develop. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. Thank you. Added references: Booth, J., Croucher, K., & Bryant, E. (2021). Dying to talk? Co-producing resources with young people to get them talking about bereavement, death and dying. Voluntary Sector Review , 12 (3), 333-357. Brog, N. A., Hegy, J. K., Berger, T., & Znoj, H. (2022). Effects of an internet-based self-help intervention for psychological distress due to COVID-19: results of a randomized controlled trial. Internet interventions , 27 , 100492. Entilli, L., Kõlves, K., De Leo, D., & Cipolletta, S. (2024). Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction , 1-11. Heckendorf, H., Lehr, D., & Boß, L. (2022). Effectiveness of an internet-based self-help intervention versus public mental health advice to reduce worry during the COVID-19 pandemic: a Pragmatic, parallel-group, randomized controlled trial. Psychotherapy and psychosomatics , 91 (6), 398-410. Milner, R. J., & Echterling, L. G. (2021). Co-constructing meaning in the time of coronavirus. Journal of Constructivist Psychology , 34 (3), 295-308. Dominguez-Rodriguez, A., Sanz-Gomez, S., González Ramírez, L. P., Herdoiza-Arroyo, P. E., Trevino Garcia, L. E., de la Rosa-Gómez, A., ... & Miaja, M. (2023). The Efficacy and Usability of an Unguided Web-Based Grief Intervention for Adults Who Lost a Loved One During the COVID-19 Pandemic: Randomized Controlled Trial. Journal of Medical Internet Research , 25 , e43839. Walsh, F. (2020). Loss and resilience in the time of COVID‐19: Meaning making, hope, and transcendence. Family process , 59 (3), 898-911. Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief:- [1],[2],[3] Thank you we have added additional references into the introduction specific to the challenges of meaning-making in the context of COVID-19. We have not cited references 1 and 2 as they are concerned with 1. online communities and 2. prolonged grief which have not been the foci of our work. The social disconnection between a dying person and family, caused by social distancing precautions, meant the construction of family narratives of end-of-life was compromised. A review of the international literature, across 13 countries during COVID-19, found that whilst there was diversity of experience based on culture and belief systems all countries identified significant impact on family bereavement (Stroebe & Schut, 2021). Almost half (49%) of respondents to a survey of 2,000 UK adults, carried out by Dying Matters, agreed that being unable to be with someone as they died, or attend their funeral, would make it harder for them to process the death (Penny, 2020) . It is narratives that serve to link the biography of a living family member with the death and which are important in the process of making sense of what has happened, paying tribute to the deceased and in reconstructing bonds between the bereaved and their deceased family member (Klass et al., 2014; Walter, 1996). This meaning-making process is essential for family wellbeing and resilience (Gilbert, 1996), yet it was challenged by the chaos and confusion of the pandemic and variance of COVID-19 control measures (Milner & Echterling 2021). As highlighted by Walsh (2020) during COVID-19 families experienced multiple stressors and needed help to build resilience in their grief, strengthen family bonds, accommodate uncertainty and navigate challenges. Meaning-making processes necessitated shared attempts to make sense of loss, identify previously utilised coping strategies and develop a sense of coherence. b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. Thank you we agree and have removed the brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Thank you we have added recent references. We understand that outlining the benefits and drawbacks of online tools is helpful for the reader to understand the current state of knowledge. However, given the diversity of web-based interventions and the vast literature we consider this would be more appropriate as a standalone review as it would not be possible to do this justice in an introduction. The Families and Friends in Bereavement intervention was developed to encourage users to consider their bereavement experience in the context of family, friends and close social networks, to promote communication and meaning-making, fostering coherence and resilience (McKnight, 2015). Web-based interventions are known to provide effective and accessible psychological support ( Dominguez-Rodriguez et al 2023; Brog et al 2022; Heckendorf et al 2022 ; Cowpertwait & Clarke, 2013; Knowles et al., 2017; Stroebe et al., 2008); and they have the advantage of enabling users to access support when needed, increasing the potential effectiveness of bereavement support (Hewison et al., 2020). Furthermore, recent evidence has highlighted the need for a family centered and online approach for bereavement support (Harrop et al., 2020). Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Our web-based intervention is specific to the 60% of bereaved people who manage their bereavement with the help of family, friends and support networks alone. We state that the intervention is complimentary to other bereavement support and acknowledge certain types of loss particularly those that can result in complex or prolonged grief may require professional intervention. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] Thank you we have added this into the following paragraph. Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family-level extension to the Dual Process Model (Stroebe & Schut, 2015) which were used to develop the family-focused intervention. The co-production approach (Grindell et al., 2022) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” (Goodyear-Smith et al., 2015) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and and death related studies (Booth et al 2021, Entilli et al 2024). b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Whilst resource and time factors were a consideration it was not our intent to achieve data saturation (we felt that this would be impossible due to the individual nature of grief) but the reason for selecting co-production as an approach was to enable the robust underpinning of the web-resource design informed by lived experience. Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. As stated in the paper the survey was distributed via the National Bereavement Alliance; Hospice UK; a large patient and public involvement network; and social media. None of these routes were aligned to or linked to the funders. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? Thank you we have added the following. Survey results were analyzed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group. e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. Thank you for this comment. We made the decision not to include relationship status in the descriptor as it would have been challenging to address this equitably as respondents had personal and/or professional experiences, and for many these were cumulative experiences. Furthermore, our work focuses on a collective (family) approach to grief and the theoretical underpinning of the web-resource (Dual Process Model, family extension) highlights that roles are not static but evolve and new ones develop. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. Thank you. Added references: Booth, J., Croucher, K., & Bryant, E. (2021). Dying to talk? Co-producing resources with young people to get them talking about bereavement, death and dying. Voluntary Sector Review , 12 (3), 333-357. Brog, N. A., Hegy, J. K., Berger, T., & Znoj, H. (2022). Effects of an internet-based self-help intervention for psychological distress due to COVID-19: results of a randomized controlled trial. Internet interventions , 27 , 100492. Entilli, L., Kõlves, K., De Leo, D., & Cipolletta, S. (2024). Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction , 1-11. Heckendorf, H., Lehr, D., & Boß, L. (2022). Effectiveness of an internet-based self-help intervention versus public mental health advice to reduce worry during the COVID-19 pandemic: a Pragmatic, parallel-group, randomized controlled trial. Psychotherapy and psychosomatics , 91 (6), 398-410. Milner, R. J., & Echterling, L. G. (2021). Co-constructing meaning in the time of coronavirus. Journal of Constructivist Psychology , 34 (3), 295-308. Dominguez-Rodriguez, A., Sanz-Gomez, S., González Ramírez, L. P., Herdoiza-Arroyo, P. E., Trevino Garcia, L. E., de la Rosa-Gómez, A., ... & Miaja, M. (2023). The Efficacy and Usability of an Unguided Web-Based Grief Intervention for Adults Who Lost a Loved One During the COVID-19 Pandemic: Randomized Controlled Trial. Journal of Medical Internet Research , 25 , e43839. Walsh, F. (2020). Loss and resilience in the time of COVID‐19: Meaning making, hope, and transcendence. Family process , 59 (3), 898-911. Competing Interests: No competing interests were disclosed. Close Report a concern COMMENT ON THIS REPORT Comments on this article Comments (0) Version 2 VERSION 2 PUBLISHED 22 Aug 2023 ADD YOUR COMMENT Comment keyboard_arrow_left keyboard_arrow_right Open Peer Review Reviewer Status info_outline Alongside their report, reviewers assign a status to the article: Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions Reviewer Reports Invited Reviewers 1 2 Version 2 (revision) 22 Apr 24 Version 1 22 Aug 23 read read Lorenza Entilli , University of Padova, Padova, Italy Anne Finucane , The University of Edinburgh, Edinburgh, UK Comments on this article All Comments (0) Add a comment Sign up for content alerts Sign Up You are now signed up to receive this alert Browse by related subjects keyboard_arrow_left Back to all reports Reviewer Report 0 Views copyright © 2024 Finucane A. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 21 Mar 2024 | for Version 1 Anne Finucane , The University of Edinburgh, Edinburgh, Scotland, UK 0 Views copyright © 2024 Finucane A. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. format_quote Cite this report speaker_notes Responses (1) Approved With Reservations info_outline Alongside their report, reviewers assign a status to the article: Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Please note the number of survey respondents and workshop participants. A sentence relating to next steps would be a useful addition to the Conclusion. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Is the work clearly and accurately presented and does it cite the current literature? Yes Is the study design appropriate and is the work technically sound? Yes Are sufficient details of methods and analysis provided to allow replication by others? Yes If applicable, is the statistical analysis and its interpretation appropriate? Not applicable Are all the source data underlying the results available to ensure full reproducibility? No source data required Are the conclusions drawn adequately supported by the results? Yes References 1. Gale NK, Heath G, Cameron E, Rashid S, et al.: Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol . 2013; 13 : 117 PubMed Abstract | Publisher Full Text 2. Skivington K, Matthews L, Simpson SA, Craig P, et al.: A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ . 2021; 374 : n2061 PubMed Abstract | Publisher Full Text Competing Interests No competing interests were disclosed. Reviewer Expertise Palliative care, psychological support. I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. reply Respond to this report Responses (1) Author Response 26 Apr 2024 Natasha Campling, School of Health Sciences, University of Southampton, Southampton, SO17 1BJ, UK This paper describes the development of an online family-focused bereavement support intervention underpinned by family sense of coherence and the dual process model. This is a useful paper describing prototype development. The intervention - Families in Bereavement - will be further tested and evaluated. Well done to the research team on their timely, interesting, and valuable work. I have noted some minor points below in relation to clarification and possible restructuring. Thank you, we note that you think there are some minor points and possible restructuring to be addressed. Title: The quotation in the title at first suggests that this paper is a qualitative study of the experiences of bereaved people as opposed to an intervention development study. You might consider including the name of the actual intervention in the study in place of the quote. Thank you we have amended the title to include the name of the intervention. Abstract It is not entirely clear from the abstract whether an invention prototype was actually developed. Clarification would be helpful. Thank you, the intervention was developed and piloted as outlined in the abstract. It is publicly available at: www.familiesandfriendsinbereavement.org.uk Please note the number of survey respondents and workshop participants. This has been added. A sentence relating to next steps would be a useful addition to the Conclusion. We have clarified in the conclusion that the intervention is live and publicly accessible. Introduction The introduction clearly introduces the proposed interventions, describes the background literature and theoretical basis informing the content, and outlines the aim of this paper. Review or delete the two-word sentence “Estimates suggest”. Thank you, this has been removed. Methods “ We applied the three Family Sense of Coherence constructs to bereavement: defining meaning and wanting to respond and create meaning as a family …” Perhaps add a little more detail in this paragraph to explain Family Sense of Coherence, especially for readers unfamiliar with family Sense of Coherence and how it applies to bereavement. Or perhaps clarify what is meant using brief examples. Thank you we have clarified this further in the introduction (paragraph 5). Figure 3, paragraph starting “Together the models….” Which models – dual process and sense of coherence – please specify. Thank you we have now consistently referred to our 'theoretical framework' which draws from both the Family Sense of Coherence and the family extension to the Dual Process Model. Figure 3 is named “The theories combined”. Are theories and models being interchangeably? Please choose term for consistency or clarify. It would be useful if you would specify the theories/models for the reader to avoid any confusion. This has been altered for clarity to 'theoretical framework'. “Combined, Family Sense of Coherence and the family level extension to the Dual Process Model, were used to create a robust theoretical framework to guide family orientated bereavement support.” This sentence comes after the models/theories are displayed – should it come earlier? Thank you this has been moved. Revise sentence to flow better: “ From the limited evidence available at this time on bereavement during COVID-19 papers explored the nature of family experiences and support needs.” Thank you this has been altered. Scoping review Please clarify the number of papers identified and briefly summarise any key characteristics (eg country where data was gathered, type of bereavement or bereaved populations included etc). Thank you the number of papers have been added but the scoping work was to inform the intervention development and was not intended as a formal scoping review and is therefore not reported as such. I think Table 1 would work better as two paragraphs in the scoping review section as opposed to a Table. Thank you we put this as a Table due to the word limit for the journal but as recommended we have altered this in the revised paper. Given the number of papers identified on ‘support needs’ the text could elaborate on findings. For instance, there were 5 papers on service response and willingness to adapt – it would be good to see some further insights for intervention development based on this evidence. Thank you see Table 2, questions 2 and 3 which were directly informed by the scoping work focusing on family experiences and support needs. Survey The results of the scoping work and survey might sit better in the Results section rather than the methods. Thank you the paper was written initially in a traditional format however internal peer review recommended situating the methods and findings of the respective stages together to avoid confusion. We feel that this enhances the flow of the paper and improves the overall narrative. Please describe PPI input in a separate paragraph somewhere in the paper – good to see the contribution of PPI at different points in the study. Please say something more about the “Large patient and public involvement network”. Who are these? Was it a pre-existing network or one developed for the study? Thank you we have explained this was a national network, but to ensure anonymity we have avoided further details. In keeping with the above point we have retained the PPI involvement in the respective sections. Information on survey completion would fit better in the results section than in the Methods. Characteristics of respondents would also fit better in the Results section. Please refer to the point above. Please add some information the co-design workshop in the Methods section – who were recruited and how. What was discussed. How long did it last. Who facilitated. Please see co-production workshop p14. As stated above we feel that information about recruitment, content and facilitation work best here. We acknowledge this is not traditional but for the sake of flow have opted for this approach throughout. Results The qualitative data, analysed using framework analysis, could be better presented using categories or themes, or by presenting a matrix. At present the whole section is narrative in form and would benefit from some structure. See Gale 2013. Thank you. For the survey data we have added sub-headings to clarify the themes generated. For the workshop data as we applied Framework Analysis utilising a theoretical lens it was most appropriate for the data to be mapped to the three core constructs of Family Sense of Coherence. Typically only one or two quotes are needed to evidence a key point in the text, though other quotes can be usefully included in appendices. Seven quotes to illustrate a general paragraph seems like too many (unless each is linked to a different point which should then be clearly stated). We have drawn on multiple quotes due to the rich and diverse perspectives – personal, voluntary and professional, and to highlight the diversity and individuality of grief itself. As authors we wanted to ensure their voices were heard and this was imperative to our co-production methodology. The quotes cited build on one another increasing understanding of experience, rather than duplicating. Details on recruitment for the co-production workshop should be moved to the Methods. The section on the co-production workshop describes the practical recommendations from the survey on intervention content (e.g. description of what the resource is about on the landing page). This should appear in the results relating to the survey, as opposed to the section on the co-production workshop. Please refer to our response above re. the narrative flow and format. A box or table highlighting the practical recommendations that were identified from survey data would be very helpful and useful for to anyone organizations involved in the development of online bereavement support resources. Thank you some practical recommendations could be drawn by readers from Table 5. “ The workshop was facilitated by the research team, and in response to the survey findings that highlighted the importance of creative activities, an artist and musician contributed to the intervention content.” Please specify how the artist and musician contributed. Thank you this has been added. Table 4 would be better placed in the methods in a paragraph describing the format and content etc of the co-production workshop (These are not results). Please refer to our response re. narrative flow and format. On p13 the authors say that framework analysis was then conducted, however to the reader it might appear that the section above that had been analysed using framework analysis. And no further findings are noted in relation to this additional framework analysis. Some clarification is needed. Thank you we recognise that this was confusing, we have therefore amended the wording. Please add a paragraph clearly describing the final intervention prototype, how it is navigated, how bereaved people can find it (how will they know about it), what platform is it on, will it be moderate or is it fully self-guided and so on. Thank you we have amended and updated the paragraph at the end of the discussion. Discussion A paragraph on what would be useful regarding the development of online bereavement support interventions in general would be very helpful for organisations providing bereavement support or those involved in service development. This could go under an “Implications for practice” heading. Any implications for researchers conducting intervention development work in this area would also be useful. Thank you. As our focus, co-production, data collection and analysis was specific to family support we have been cautious not to suggest the transferability of our findings to the development of other online bereavement support interventions. A paragraph on ideas regarding future plans for sustainability, implementation and funding would be relevant here. Even though this is the first phase of development, thinking about implementation, moderation, sustainability from the onset of intervention development is recommended. (Skivington et al 2021). Thank you. We have provided further information in the paragraph at the end of the discussion section. View more View less Competing Interests None reply Respond Report a concern Finucane A. Peer Review Report For: “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.5256/f1000research.147225.r246498) NOTE: it is important to ensure the information in square brackets after the title is included in this citation. The direct URL for this report is: https://f1000research.com/articles/12-1024/v1#referee-response-246498 keyboard_arrow_left Back to all reports Reviewer Report 0 Views copyright © 2024 Entilli L. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 19 Feb 2024 | for Version 1 Lorenza Entilli , University of Padova, Padova, Italy 0 Views copyright © 2024 Entilli L. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. format_quote Cite this report speaker_notes Responses (1) Approved With Reservations info_outline Alongside their report, reviewers assign a status to the article: Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions I appreciate the opportunity to review this manuscript, as the topic holds significant importance for clinical practices related to grief. Introduction section: the narrative is notably straightforward and comprehensible. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief: - [1],[2],[3] b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL,MMfollowing the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. I trust that the recommendations offered will prove useful in enhancing the impact of the research and its contributions. Is the work clearly and accurately presented and does it cite the current literature? Yes Is the study design appropriate and is the work technically sound? Partly Are sufficient details of methods and analysis provided to allow replication by others? Partly If applicable, is the statistical analysis and its interpretation appropriate? Not applicable Are all the source data underlying the results available to ensure full reproducibility? Yes Are the conclusions drawn adequately supported by the results? Yes References 1. Swartwood RM, Veach PM, Kuhne J, Lee HK, et al.: Surviving grief: An analysis of the exchange of hope in online grief communities. Omega (Westport) . 2011; 63 (2): 161-81 PubMed Abstract | Publisher Full Text 2. Eisma M, Boelen P, Lenferink L: Prolonged grief disorder following the Coronavirus (COVID-19) pandemic. Psychiatry Research . 2020; 288 . Publisher Full Text 3. Walsh F: Loss and Resilience in the Time of COVID-19: Meaning Making, Hope, and Transcendence. Fam Process . 2020; 59 (3): 898-911 PubMed Abstract | Publisher Full Text 4. Döveling K: Online Emotion Regulation in Digitally Mediated Bereavement. Why Age and Kind of Loss Matter in Grieving Online. Journal of Broadcasting & Electronic Media . 2017; 61 (1): 41-57 Publisher Full Text 5. Davidson D, Letherby G: Griefwork online: perinatal loss, lifecourse disruption and online support. Hum Fertil (Camb) . 2014; 17 (3): 214-7 PubMed Abstract | Publisher Full Text 6. Beaunoyer E, Hiracheta Torres L, Maessen L, Guitton MJ: Grieving in the digital era: Mapping online support for grief and bereavement. Patient Educ Couns . 2020. PubMed Abstract | Publisher Full Text 7. Gibson A, Wladkowski SP, Wallace CL, Anderson KA: Considerations for Developing Online Bereavement Support Groups. J Soc Work End Life Palliat Care . 2020; 16 (2): 99-115 PubMed Abstract | Publisher Full Text 8. Lenferink LIM, de Keijser J, Eisma MC, Smid GE, et al.: Treatment gap in bereavement care: (Online) bereavement support needs and use after traumatic loss. Clin Psychol Psychother . 2021; 28 (4): 907-916 PubMed Abstract | Publisher Full Text 9. Robinson C, Pond D: Do online support groups for grief benefit the bereaved? Systematic review of the quantitative and qualitative literature. Computers in Human Behavior . 2019; 100 : 48-59 Publisher Full Text 10. Cipolletta S, Entilli L, Bettio F, De Leo D: Live-Chat Support for People Bereaved by Suicide. Crisis . 2022; 43 (2): 98-104 PubMed Abstract | Publisher Full Text 11. Entilli L, Kõlves K, De Leo D, Cipolletta S: Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction . 2024. 1-11 Publisher Full Text 12. Michael Massimi: Exploring remembrance and social support behavior in an online bereavement support group. research: gate . 2013. Competing Interests No competing interests were disclosed. Reviewer Expertise online grief support; traumatic bereavement support; qualitative studies I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. reply Respond to this report Responses (1) Author Response 22 Apr 2024 Natasha Campling, School of Health Sciences, University of Southampton, Southampton, SO17 1BJ, UK Introduction section: the narrative is notably straightforward and comprehensible. Thank you. a) the section might be enhanced with more recent literature references and a deeper elucidation of the concept of meaning-making in the context of grief:- [1],[2],[3] Thank you we have added additional references into the introduction specific to the challenges of meaning-making in the context of COVID-19. We have not cited references 1 and 2 as they are concerned with 1. online communities and 2. prolonged grief which have not been the foci of our work. The social disconnection between a dying person and family, caused by social distancing precautions, meant the construction of family narratives of end-of-life was compromised. A review of the international literature, across 13 countries during COVID-19, found that whilst there was diversity of experience based on culture and belief systems all countries identified significant impact on family bereavement (Stroebe & Schut, 2021). Almost half (49%) of respondents to a survey of 2,000 UK adults, carried out by Dying Matters, agreed that being unable to be with someone as they died, or attend their funeral, would make it harder for them to process the death (Penny, 2020) . It is narratives that serve to link the biography of a living family member with the death and which are important in the process of making sense of what has happened, paying tribute to the deceased and in reconstructing bonds between the bereaved and their deceased family member (Klass et al., 2014; Walter, 1996). This meaning-making process is essential for family wellbeing and resilience (Gilbert, 1996), yet it was challenged by the chaos and confusion of the pandemic and variance of COVID-19 control measures (Milner & Echterling 2021). As highlighted by Walsh (2020) during COVID-19 families experienced multiple stressors and needed help to build resilience in their grief, strengthen family bonds, accommodate uncertainty and navigate challenges. Meaning-making processes necessitated shared attempts to make sense of loss, identify previously utilised coping strategies and develop a sense of coherence. b) The statement “(It is difficult to determine if this is the case beyond Western societies due to paucity of evidence, and further research is required to understand the focus of interventions globally).” is pivotal in the study. Therefore, it merits emphasis without the use of brackets. Thank you we agree and have removed the brackets. c) The assertion that "Web-based interventions are known to provide effective and accessible psychological support" is significant. However, the cited literature, such as Cowpertwait & Clarke (2013) and Stroebe et al. (2008), might not be entirely relevant or current. I suggest revisiting the literature to incorporate recent studies on this subject, along with a detailed analysis of the advantages and disadvantages of such tools. Given the abundance of literature on this topic, it would be beneficial to assist the reader in evaluating the current state of the art to better understand the novelty of your contribution. Thank you we have added recent references. We understand that outlining the benefits and drawbacks of online tools is helpful for the reader to understand the current state of knowledge. However, given the diversity of web-based interventions and the vast literature we consider this would be more appropriate as a standalone review as it would not be possible to do this justice in an introduction. The Families and Friends in Bereavement intervention was developed to encourage users to consider their bereavement experience in the context of family, friends and close social networks, to promote communication and meaning-making, fostering coherence and resilience (McKnight, 2015). Web-based interventions are known to provide effective and accessible psychological support ( Dominguez-Rodriguez et al 2023; Brog et al 2022; Heckendorf et al 2022 ; Cowpertwait & Clarke, 2013; Knowles et al., 2017; Stroebe et al., 2008); and they have the advantage of enabling users to access support when needed, increasing the potential effectiveness of bereavement support (Hewison et al., 2020). Furthermore, recent evidence has highlighted the need for a family centered and online approach for bereavement support (Harrop et al., 2020). Recommendations: [4],[5],[6],[7],[8],[9] [10],[12] As for the last recommended article, it would be useful for the authors to specify whether they believe certain types of losses may benefit more or less from online support, such as traumatic loss. Furthermore, it is important to consider whether authors classify COVID-19 deaths as traumatic. This kind of clarification is significant, particularly if the authors advocate for a family-centered approach, as existing literature indicates that certain losses may have a more disruptive (or generative in the long term) impact on family bonds than others. Our web-based intervention is specific to the 60% of bereaved people who manage their bereavement with the help of family, friends and support networks alone. We state that the intervention is complimentary to other bereavement support and acknowledge certain types of loss particularly those that can result in complex or prolonged grief may require professional intervention. Method section. a) The co-production approach presents intriguing possibilities alongside limitations. It would be beneficial to reference works that have already employed this approach within the context of COVID-19 grief.[11] Thank you we have added this into the following paragraph. Our approach to intervention-development was underpinned by co-production and theoretically informed by Family Sense of Coherence (Antonovsky & Sourani, 1988) and the family-level extension to the Dual Process Model (Stroebe & Schut, 2015) which were used to develop the family-focused intervention. The co-production approach (Grindell et al., 2022) developed partnerships between the research team, people with real world experience of bereavement, and community and national stakeholders. Involving people with lived experience of this specific context, leveraging their knowledge, experience and insights, to enable a deep understanding of the challenges they face; and encouraging the uptake of outputs was used to help ensure “contextual fit” (Goodyear-Smith et al., 2015) and findings that have relevance to end users of the web-resource. Co-production offered an opportunity to enhance individual’s agency and COVID-19 as an unprecedented event made the inclusion of experts by experience imperative, as a result co-production has been used as a methodological approach in COVID-19, grief and and death related studies (Booth et al 2021, Entilli et al 2024). b) The population under study appears to be homogeneous in certain aspects but heterogeneous in others, as evidenced by literature indicating, for instance, that women tend to seek help more frequently than men. It would be insightful for the authors to elaborate on whether they are satisfied with the level of saturation achieved. Did they conclude data collection when saturation or homogeneity was attained (if this was their intent), or were other factors such as time and resources the determining factors? Whilst resource and time factors were a consideration it was not our intent to achieve data saturation (we felt that this would be impossible due to the individual nature of grief) but the reason for selecting co-production as an approach was to enable the robust underpinning of the web-resource design informed by lived experience. Lastly, it is crucial to understand how the survey was disseminated. Is there a possibility that primarily professionals and patients closely associated with the funding institute were reached? While not inherently a limitation, this factor needs to be discussed in terms of representativeness to ensure a comprehensive understanding of the study's findings. As stated in the paper the survey was distributed via the National Bereavement Alliance; Hospice UK; a large patient and public involvement network; and social media. None of these routes were aligned to or linked to the funders. d) data analysis “Survey results were analysed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below.” Critical pieces of information are absent in the manuscript and need clarification. For instance: - who between the authors conducted the analysis? - how was consensus reached between authors? Thank you we have added the following. Survey results were analyzed using Framework Analysis (Ritchie et al., 1994) by NC, SL, MM following the five stages of data familiarization, framework identification, indexing, charting, and mapping and interpretation, and generated key themes outlined below. NC, SL, and MM conducted the analysis and agreement was reached on coding and theme generation via team analysis workshops. Findings were shared to check interpretation and gain consensus with the co-production group. e) Considering the emphasis on family bonds, it would be beneficial to include the relationship status with the deceased in the participant descriptions following the quotation. For example, "Participant 17, daughter, personal." Furthermore, it is important to briefly discuss or at least consider in the analysis and discussion throughout the paper how different family roles might have influenced the experience of loss. Thank you for this comment. We made the decision not to include relationship status in the descriptor as it would have been challenging to address this equitably as respondents had personal and/or professional experiences, and for many these were cumulative experiences. Furthermore, our work focuses on a collective (family) approach to grief and the theoretical underpinning of the web-resource (Dual Process Model, family extension) highlights that roles are not static but evolve and new ones develop. f) The summary of feedback from the pilot website provides valuable and informative insights for the reader. Thank you. Added references: Booth, J., Croucher, K., & Bryant, E. (2021). Dying to talk? Co-producing resources with young people to get them talking about bereavement, death and dying. Voluntary Sector Review , 12 (3), 333-357. Brog, N. A., Hegy, J. K., Berger, T., & Znoj, H. (2022). Effects of an internet-based self-help intervention for psychological distress due to COVID-19: results of a randomized controlled trial. Internet interventions , 27 , 100492. Entilli, L., Kõlves, K., De Leo, D., & Cipolletta, S. (2024). Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography. International Journal of Human–Computer Interaction , 1-11. Heckendorf, H., Lehr, D., & Boß, L. (2022). Effectiveness of an internet-based self-help intervention versus public mental health advice to reduce worry during the COVID-19 pandemic: a Pragmatic, parallel-group, randomized controlled trial. Psychotherapy and psychosomatics , 91 (6), 398-410. Milner, R. J., & Echterling, L. G. (2021). Co-constructing meaning in the time of coronavirus. Journal of Constructivist Psychology , 34 (3), 295-308. Dominguez-Rodriguez, A., Sanz-Gomez, S., González Ramírez, L. P., Herdoiza-Arroyo, P. E., Trevino Garcia, L. E., de la Rosa-Gómez, A., ... & Miaja, M. (2023). The Efficacy and Usability of an Unguided Web-Based Grief Intervention for Adults Who Lost a Loved One During the COVID-19 Pandemic: Randomized Controlled Trial. Journal of Medical Internet Research , 25 , e43839. Walsh, F. (2020). Loss and resilience in the time of COVID‐19: Meaning making, hope, and transcendence. Family process , 59 (3), 898-911. View more View less Competing Interests No competing interests were disclosed. reply Respond Report a concern Entilli L. Peer Review Report For: “The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention [version 2; peer review: 2 approved with reservations] . F1000Research 2024, 12 :1024 ( https://doi.org/10.5256/f1000research.147225.r240907) NOTE: it is important to ensure the information in square brackets after the title is included in this citation. 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