{"paper_id":"24460d72-7608-4e9f-9103-7385b9a18cfc","body_text":"Family members’ reasons for initiating and completing the Family Talk Intervention when a child has palliative care needs – an interview study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Family members’ reasons for initiating and completing the Family Talk Intervention when a child has palliative care needs – an interview study Charlotte Weiner, Kerstin Iveus, Camilla Udo HSW, Maja Holm, Lena Anmyr, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9115579/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background Families of children with palliative care needs face significant psychosocial distress. Research has highlighted that open communication within the family promotes psychosocial well-being and reduces stress. Despite the clear need for psychosocial support, few scientifically evaluated family interventions exist, and knowledge about the factors that facilitate or hinder families regarding their initiation and completion of psychosocial support is inadequate. Aim To explore family members’ reasons for initiating and completing a psychosocial family intervention, the Family Talk Intervention (FTI), when a child in the family has palliative care needs and is receiving care in a pediatric hospital setting. Methods This study is part of a hybrid effectiveness-implementation study where FTI was provided to families with a child in need of palliative care. It includes interviews with 40 family members (i.e., parents, the ill child, and siblings) conducted after completing FTI. Reflexive thematic analysis was used to generate data. Results The analysis constructed five themes that describe families’ reasons for initiating and completing FTI. Two themes reflected their reasons for initiating FTI: The family members’ well-being and life situation and The timing and place of and information about FTI , and three themes reflected their reasons for completing FTI: Everyday logistics , The structure and content of FTI , and The HSW’s approach. Conclusion Logistical, relational and interpersonal factors are central to the familes’ sense of security, which enhances their willingness to engage in psychosocial support, such as FTI. Integrating FTI into the child’s care and tailoring it to each family’s preferences may better address their specific needs. Children Family members Family Talk Intervention Palliative care Qualitative Figures Figure 1 Figure 2 BACKGROUND Families with children in need of palliative care face various psychosocial challenges, including stress [ 1 ]. Previous research reveals that open family communication enhances family well-being by reducing psychosocial stress [ 2 – 5 ]. Other studies have shown that both children and parents express a desire for psychosocial support when a family member has palliative care needs [ 3 , 6 ]. Research shows that parents who have a child with a severe illness, including palliative care needs, commonly describe emotional burdens and a loss of control over the situation [ 7 ]. Emotional burdens are often related to increased concerns about the disease and the treatment; they can experience both a lack of information and information overload [ 8 ], which causes anxiety and everyday uncertainty [ 9 , 10 ]. Due to the emotional burdens, parents often avoid communicating about the disease within the family in the hope of protecting their children and themselves from further stress [ 8 , 11 ]. Likewise, research reveals that children with cancer tend to protect their parents from increased burdens by avoiding questions about the illness [ 3 , 12 ]. The withholding of emotions and the persistence of unaddressed concerns, resulting from the phenomenon of ‘double protection’, have been shown to adversely affect family communication [ 13 , 14 ]. Given the detrimental effects that a serious illness affecting one family member can impose on the entire family, it is imperative that support is directed towards the family as a whole [ 5 ]. In order to ensure that family members have access to structured psychosocial support on equal terms, a family-centered intervention, the Family Talk intervention (FTI), originally used in psychiatric contexts [ 15 ], has been evaluated in Swedish care settings where a family member, including children, has palliative care needs. FTI focuses primarily on facilitating family communication about illness-related subjects, with the family’s own narratives playing a central role. FTI also aims to support parenting and make the children’s needs visible. Moreover, FTI emphasizes the children’s voices when problematic situations within the family are raised, facilitating the sharing of experiences and highlighting the diverse perspectives of all family members [ 16 ]. However, limited knowledge exists regarding the factors that motivate or hinder families in participating in family support programs, such as FTI, during the ongoing care of children with severe illnesses. Despite the acknowledged value of psychosocial support being integrated early in care, some research shows that in the phase immediately after diagnosis, there may be obstacles to the implementation of psychosocial interventions because families are often dealing with intensive medical treatment and elevated psychological strain [ 17 ]. It is therefore important to explore the perspectives of all family members which may reveal factors that facilitate or hinder their initiation and completion of family support, such as FTI. This would increase understanding and enable the tailoring of family support in this context. AIM To explore family members’ reasons for initiating and completing a psychosocial support intervention, FTI, when a child in the family has a severe illness and is receiving palliative care in a pediatric hospital setting. METHODS Design This interview study derives from an effectiveness-implementation hybrid type 2 study design [ 18 ] where FTI was carried out with families in which a child had palliative care needs. It includes interviews with parents, ill children, and siblings after having completed FTI. Education and recruitment Hospital Social workers (HSWs) permanently employed at a children’s hospital or a children’s hospice in Sweden received FTI education and training from February 2021 to January 2022 (n = 15). This included 10 lectures and was led by two HSWs with extensive experience of using FTI. The first part of the education involved theory and role play while the second part focused on practical training during 30 hours of supervision, including conducting FTI with at least one family under supervision. Participants The inclusion criteria for participating in FTI were families with a child with a severe illness aged up to 18 years. An exclusion criterion was non-Swedish speaking families. The selection of families for interviews was purposive, aiming to ensure representation of different medical conditions, in line with the definition described by Benini et al. [ 19 ]. The recruitment of families by HSWs started in April 2022 and continued until December 2024; a total of 32 families were recruited. Three families withdrew prior to the start of the study for various reasons; 29 families therefore participated in the FTI intervention. One family discontinued participation for an unknown reason. In total, 28 families completed FTI. Of these, 13 were interviewed. The entire family or part of the family could participate, but at least two family members needed to be included. The family defined the members, which means that all types of family members were eligible for participation. After completion of FTI, a selection of families was interviewed (n = 13) based on the ambition to include variety, e.g., different diagnoses, family compositions, and age of children. In total, 26 parents and two other significant adults, five ill children, and nine siblings were interviewed. The interviews were conducted by two researchers (KI and MH), both with extensive experience of working with families affected by severe illness, and were carried out in a format and location chosen by the family, either video format or in the family’s home. For adults, a semi-structured interview guide was used. The interviews involved questions regarding their perception of the structure, content and procedure during their participation in FTI. The adult interviews lasted 13–59 minutes (mean 32 minutes) and were recorded and transcribed verbatim. The interviews with parents/other significant adults were conducted as dyad interviews with a few exceptions, such as where the parent was a single parent, or the significant adult was an aunt, or when one parent suddenly needed to go to the hospital with the ill child. The children were interviewed individually except for two siblings who chose to be interviewed together. Most children were interviewed in their home, except for two: one opted for a neutral location and the other chose a video format. At the start of the interview, the children were informed about the procedure for the interview, which was referred to as the \"game rules\". This included assurances that they could stop the interview at any time or decline to answer questions, to ensure their comfort during the process. The children were then asked about their perceptions of participating in FTI, focusing on the content and structure of the intervention, as well as their retention of key elements, such as being open about thoughts and feelings. The interviews lasted between 6 and 30 minutes, with an average duration of 16 minutes. Table 1 Background characteristics of parents, children, and other significant adults. Total interviewed, n (%) n = 40 (100) Gender Female 20 (50.0) Male 19 (37.5) Other 1 (2.5) Age Parents/other significant adults, Mean (SD) [min-max] 46 (7.6) [33–59] Children 9.9 (2.8) [ 6 – 16 ] Educational level, adults n (%) 26 (100) University 16 (62) Upper secondary school 8 (31) Primary school - Other 2 (7,5) Living with partner n (%) 26 (100) Yes 24 (92) No 2 (8) Ill child’s condition* (parent’s report) n (%) 13 (100) Group 1 (e.g., cancer) 7 (54) Group 2 (e.g., cystic fibrosis) 3 (23) Group 3 (e.g., chromosomopathies) 2 (15) Group 4 (e.g., severe brain injury) 1 (8) Group 5 (e.g., unborn children or premature infants) - *Child’s condition based on the international standard by Benini et al. [ 19 ] Analysis The structure of the analysis process was guided by Braun and Clarke’s six steps of inductive (data-driven) qualitative thematic analysis [ 20 ] using a reflexive approach, where the researcher is active, reflective, and creative in the interpretation of themes [ 21 , 22 ]. Reflexivity acknowledges how prior experiences and knowledge of caring for children with severe illnesses shape interpretation. Recognizing these influences - professional, emotional, and ethical - ensures transparency and strengthens analytical credibility throughout the following steps. 1) Familiarization with the data was achieved by the first author (CW) repeatedly reading the interview transcripts in their entirety. 2) Significant data, i.e., central concepts and recurring patterns from the transcripts, were identified and organized into codes. 3) Codes were then sorted into potential themes related to the families’ descriptions of their reasons for initiating FTI and facilitating factors and challenges in completing FTI. 4) CW reflectively reviewed the preliminary themes by thoroughly reading and comparing all codes with all transcripts to confirm thematic validity and define meaning-making themes. 5) CW then structured and named the themes, discussed them with the authors KI, ML, and CU, and revised them. 6) Finally, the report was written by CW and reviewed by all authors prior to submission. Selected segments of transcripts were used to illustrate the families’ descriptions. RESULTS The analysis generated five themes that together illuminate families’ reasons for initiating and completing FTI. Two themes captured the motivations for initiating FTI: The family members’ well‑being and life situation , which influenced whether they felt able to engage with the intervention, and The timing of and information about FTI , which stresses how relevant the intervention appeared for the families when it was offered (Fig. 1). Three additional themes described why families chose to continue and complete FTI: Everyday logistics , reflecting how practical conditions enabled or hindered ongoing participation; The structure and content of FTI , which affected how supportive the intervention felt; and The HSW’s approach , where the professionals’ competence, and relational engagement played a central role in sustaining families’ motivation (Fig. 2) Families’ reasons for initiating FTI Figure 1. Analytical map – Illustrates the related factors that facilitated or challenged family members in initiating FTI, and formed the basis for the construction of the themes. The family members’ well-being and life situation When FTI was offered, a reason for families agreeing to take part was their hope of receiving adequate psychosocial support, largely due to the absence of being offered other counselling support from the healthcare services. As one mother said: “So we asked for counselling from the very beginning, mostly just to be able to sit and bring up everything that you want to say.” Other motivating factors for initiating FTI, especially for siblings and parents, were the opportunity to share emotions and to have dedicated time together to do so. Children highlighted their concerns about the family’s emotional well-being as a reason for engaging in FTI. Similarly, parents were driven by the worry that their children, particularly siblings, were not receiving sufficient support. ”... Yes, but we thought that was great because we had also asked for it [psychosocial support for the children], and it’s something we’ve never been able to get - someone who can talk to our children. That has been completely impossible. So, I thought… that was perhaps the absolute main reason why we wanted to participate, also so that they would have an opportunity to make themselves heard.” (Mother, family 5) Additionally, some parents emphasized that the need for structure and stability in their life situation was a motivating factor. They viewed FTI as a way to establish routines and receive external guidance - someone to “help us keep things together” and attend to the family’s needs. Several parents also hoped that FTI would support them in reconnecting as a couple. For some, the fact that FTI was a research project further motivated them to engage in the intervention. However, family members expressed various concerns that FTI could become too burdensome because of the ill child’s well-being, e.g., distressing symptoms, which isolated the family and made life inflexible. Some of the ill children, out of consideration for their families, did not want them to spend more time at the hospital than necessary, and found it problematic that the intervention was offered there. Among the parents, other barriers to initiating FTI were related to their own health and life situation, e.g., psychological shock, cognitive fatigue, and difficulty processing information were commonly reported, making the initiation of FTI feel overwhelming due to lack of time and energy. “No, but I’m in a state of shock myself, so of course I react like that… …And on the way down, we kind of go into… defense mechanisms kick in so that you find a defensive position of: ‘How are we going to get through this? We have to solve the practical things, like you sort of go down into the mine.” (Father, family 20) The timing and place of and information about FTI Family members emphasized that the timing of when FTI was offered played a role in them initiating FTI or not. For example, due to different needs in relation to the child’s illness period, some family members experienced that FTI being offered early was motivating, while others experienced this as challenging. ” The mother: I think it [FTI] should have come a little earlier. The father: “I thought it came at quite a good time, actually. If it had come right at the beginning – I mean, the emotions need time to settle – it would have been like… yes, like a car whizzing past at a pedestrian crossing, so fast that you don’t even have time to see it. So, I think it was quite good that we didn’t start the day after the diagnosis, but that it took a little while.” (Parents in family 37). For family members, clear information about the purpose of FTI influenced the decision to start the intervention. At the same time, barriers to starting included lack of coordination on the ward, for example healthcare professionals not being aware of the ongoing support available from the HSW. …” And what I think is a pity was actually that we were about to say no, because it… how should I put it, it wasn’t really marketed correctly, but it was when [our HSW] took the time and actually caught up with you [the father].” (Mother, family 6) Some parents felt that the option to conduct FTI at the hospital was a motivating factor for initiating FTI due to feelings of safety and accessibility. Families’ reasons for completing FTI Figure 2. Analytical map – Illustrates the related factors that facilitated or challenged family members in completing FTI, and formed the basis for the construction of the themes. Everyday logistics The parents reported that completing FTI was facilitated by the logistical support they received from the HSW during the sessions, including tools to manage the crisis and their parenting role, as well as help in coordinating healthcare contacts. Completing FTI was further facilitated when parents received encouragement and practical support from other family members, including extended relatives. Parents experienced challenges in coordinating FTI sessions around the ill child’s treatments and everyday routines, further complicated by the fact that the intervention could not be provided in their home. A couple of children felt that FTI interfered with their daily activities and school commitments. However, the option to conduct sessions online was seen as helpful, even though some families faced technical issues or poor internet connections, which challenged completion of FTI. A clear factor facilitating the families’ completion of FTI was when sessions could be aligned with other healthcare appointments. The mother: “Yes it was a bit tricky, we live quite far away [from the hospital] and we also have a lot of different visits, but we had a bit of a hard time matching those calls with our other schedules, so it was a bit back and forth and extra travel and such...” The father: “Yes, but we managed to time some calls as well... Yes, co-book with other ‘things’...” (Parents, family 5) Additional logistical challenges for parents included the hierarchical structure of the healthcare setting, for example when physicians’ ward rounds were prioritized over the scheduled FTI sessions. The structure and content of FTI Family members found the structure of FTI to be both clear and unclear, which affected their experience of how easy or difficult it was to complete. The families appreciated the well-balanced topics, which were thoughtfully structured and set FTI apart from other psychosocial interventions. For example, FTI supported them in managing everyday concerns while also staying aligned with the child’s care plan. The families expressed that completion was facilitated by the whole family being allowed to participate in FTI, including siblings and extended family members. The structured format was also seen as beneficial for siblings, offering space to discuss topics beyond the illness. It was also facilitating when children could determine their own level of participation, such as choosing whether or not to answer certain questions. Some families expressed that “the family talk” (meeting 5) allowed questions to be asked of the children without causing conflict. However, one family described how “the family talk” triggered internal conflicts. While some family members experienced the absence of time pressure during the sessions as facilitating, others thought that the allotted time was insufficient, which was perceived as challenging. Furthermore, conflicting experiences emerged regarding the intervals between the FTI sessions. For instance, some family members considered the amount of time between sessions to be appropriate and supportive of the process, while others experienced the method as either too intense and demanding or overly protracted: short intervals felt burdensome, and longer intervals made it difficult to recall previous discussions, both posing challenges to the completion of FTI. At the same time, the opportunity to receive more sessions than originally planned was regarded by several family members as a valued and supportive element that facilitated completion of FTI. However, some family members still experienced challenges when FTI did not meet their needs; for example, when the number of sessions was felt to be too limited. One of the children reported that the individual FTI session was challenging to complete because they wanted their mother to be present. Another child, whose parent was present, expressed that this provided a sense of security and made it easier to speak freely. For some other family members, the expectation that all family members would be willing to talk was perceived as challenging. For example, some children described how they found answering all the questions hard, as one ill child said in the interview: ”...it was mostly difficult…it was a bit boring”. In such situations, the children described that when the HSW used drawing and clay during the sessions it was easier to complete FTI. The fact that another healthcare professional took care of the younger children during the FTI sessions was also a facilitating factor. One parent described that when their ill child appeared satisfied and emerged from a session “radiantly happy” it facilitated the completion of FTI. A couple of parents experienced challenges in completing FTI due to uncertainty about whether their children’s needs were being adequately addressed. This was when their children found it difficult to respond or did not actively participate in the family sessions due to a lack of maturity or willingness to participate. The HSW’s approach Most family members described the HSW’s approach as a factor in the completion of FTI. The HSW’s attentiveness to the children, particularly siblings, was a facilitating factor. When children trusted the HSW, including feeling safe to discuss sensitive topics, it further facilitated the completion of FTI for both children and parents. Children also found the HSW’s kindness and patience to be facilitating, as one sibling explained: “She always listened when we talked”. According to parents, the HSW’s professional guidance, accessibility and continuity created security, which was a facilitating factor for the completion of FTI. ” We had continuity with the same HSW. She also came in [when we were on another ward] and checked on how we were experiencing things and feeling, and that also created a sense of security and trust…” (Parents, family 6) Some children found it challenging to complete FTI when the HSW failed to arrive on time for scheduled sessions. Similarly, the lack of continuity, such as when the HSW was absent due to illness, was perceived as a challenge, especially by the parents. In one family, a factor complicating the completion of FTI was that the couple felt misunderstood by the HSW, perceiving that the HSW was taking the other parent’s side during the FTI sessions. However, in this case, the HSW invited an additional HSW to take part which facilitated the completion of the FTI. The family members noted that having two HSWs present was beneficial, as it enhanced the focus on the child and the family relationship. DISCUSSION The present study contributes insights into how psychosocial interventions, such as FTI, can be adapted to more effectively support families during periods of heightened vulnerability by emphasizing the need for flexible session formats and communication tailored to the child’s emotional and developmental needs. This is one of the first studies to evaluate factors that contribute to initiating participation in and completion of such an intervention. In addition to the limited availability of other psychosocial support within health care, facilitating factors for initiating FTI included the family’s need for time together and for creating structure in everyday life. Hindering factors included the child’s symptoms and insufficient information about FTI. Families described factors related to everyday logistics that both facilitated and challenged factors their completion of FTI, such as being able to fit it in around the child’s treatment and the flexibility of the method, particularly regarding the time and place of FTI. The importance of the HSW’s approach and role appeared to be crucial to the families’ experiences of safety and trust in the relationship and thereby the completion of FTI. Alongside family members’ experiences of limited access to psychosocial support at the hospital, a recurring factor motivating them to initiate FTI was their need to promote the family’s relational well-being and maintain structure during the crisis. Although existing guidelines for palliative care emphasize the importance of meeting the psychosocial needs of families and relatives when a child is faced with a life-threatening illness [ 23 ], like other research, our results indicate that these support functions are still inadequately prioritized in hospital care. The insufficient availability of psychosocial support in hospitals is well documented and continues to receive attention from research reviews [ 24 , 25 ]. It is known that the healthcare organization needs to maintain a biomedical focus, which contributes to psychosocial aspects being seen as secondary rather than as an integral part of the care process [ 26 , 27 ]. Poor cooperation between professions and a lack of resources, where the number of HSWs does not meet the needs of patients [ 26 ], can hinder continuity and trust [ 28 ]. This contributes to the risk that the provision of information about available support services is lost along the way. Our results clearly show that fragmented care was perceived to lead to a lack of information, insecurity, and uncertainty about the relevance of available support - whether FTI or other psychosocial interventions - which was in turn seen as an obstacle for relatives to engage in FTI. Similarly, research demonstrates that parents under stress may find it difficult to engage with psychosocial support due to not having ways of handling their own situation effectively [ 29 ]. This may be due to the caregiving burdens that both siblings and parents experience [ 30 , 31 ], where the prospect of additional healthcare contacts feels overwhelming and difficult to prioritize. When psychosocial support is offered, it is important therefore to take into account that family members and relatives often prioritize the needs of the child with a severe illness over their own; such support needs to be included as an integral part of the child’s care in a way that does not make it feel like a strain. Family members’ hopes of promoting the well-being of all members could also be a way to ease any feelings of guilt that may arise in connection with a child’s illness. For example, it has been reported in previous studies that parents of children with severe illnesses experience feelings of guilt, and fear a negative impact on their relationship with the ill child’s siblings [ 32 ] and on their couple relationship [ 33 ]. Some parents in this study also hoped to receive help in addressing issues in their couple relationship during FTI. Although FTI is not a couple’s intervention, it can facilitate the couple relationship [ 34 ] even if more challenging relational problems may need specific couple therapy. Our results highlight the family members’ varying needs regarding the timing of FTI. In particular, this concerned the initiation of FTI following diagnosis, which created different challenges for family members in engaging with FTI. Participants in our study also expressed diverse preferences regarding the time intervals between sessions and the desired number of sessions. Here, it is important to highlight that the parents in our study often felt that any difficulty in organizing a session was due to the limited availability of the HSW. This raises the question of whether FTI should be continuously available, allowing families to enter and exit the intervention as it suits their situation.This may be seen as an additional reason for introducing family support alongside ongoing hospital care, in particular to ensure that families have the opportunity to reduce their stress and uncertainty, but also to avoid any future psychological issues in the family. Further research on how psychosocial support should be tailored and follow the needs of families as a natural part of care would, therefore, be highly valuable. A recurring challenge in completing FTI was that families found it difficult to fit the sessions into their already demanding daily routines at the hospital. They needed to balance being present for the sick child and attending medical appointments, while at the same time supporting other family members. The children also wanted to avoid the family spending more time at the hospital than necessary. This highlights that flexibility regarding access to various support functions, such as childcare or location, or the possibility to offer FTI at home, can be crucial for families being able to participate in and benefit from FTI. Previous studies have also suggested that it would be desirable for FTI to be offered at home. For most family members, the structured format of FTI was perceived as essential to completing the intervention, as it not only provided a safe and predictable environment but also functioned as an anchor in the midst of emotional and practical chaos. By offering a predetermined framework, FTI fostered stability and relief, facilitating discussions beyond the illness and enabling families to reconnect and reflect more intentionally. These observations align with previous research on childhood cancer care, where parents often found open-ended formats challenging and burdensome, struggling to identify relevant topics [ 35 ]. Notably, the same study showed that parents prioritized processing their emotions over receiving further medical information, underscoring that the strength of FTI may lie less in knowledge transmission than in its role as a structured and supportive space for emotional processing and meaningful dialogue. Some ill children and siblings found it hard to engage in FTI, describing how talking in the sessions was difficult or boring. This may be due to the method not being adapted for children; it might also suggest that the FTI may have been experienced as emotionally demanding by some. These responses invite reflection on the diverse ways in which children cope with illness. As noted in a review study by Stein et al., (2029) limited understanding and lack of awareness of the disease have been shown to support coping among childhood cancer survivors [ 36 ]. The same review indicated that, due to parents’ expressed worry and discomfort regarding the topic, children may feel inhibited from raising their concerns. From this perspective, children’s reluctance to engage in conversation might be interpreted not merely as disengagement, but rather as a coping strategy to manage the overwhelming nature of illness. The children, in particular, emphasized that it was important that the HSW was kind and that they got to know him or her before they decided to initiate FTI. This feeling of familiarity contributed to their sense of safety and trust, which in turn facilitated the children’s willingness to participate in and complete FTI. The HSW’s accessibility and continuity were also considered important because changes, such as illness or staff turnover, can affect children’s ability to engage and feel safe. This result is in line with recent studies in childhood cancer care, which emphasize that both children and parents value personal relationships and that kindness from healthcare professionals is considered crucial in care [ 37 , 38 ]. Overall, these results suggest that relational and interpersonal aspects of care are central to families’ sense of safety and willingness to engage in interventions. Study strengths and limitations A key strength of the study is its family-centered perspective and that it was conducted in a real palliative care setting, which enhances its relevance and applicability. Another strength is that entire families were interviewed, providing a comprehensive view of family dynamics. Few comparable studies have evaluated psychosocial support from the perspectives of all family members, making this research unique. The study also examines what motivates families to accept support, offering valuable insights for healthcare professionals seeking to engage families who typically decline such interventions. Furthermore, it contributes knowledge about the entire support process from the family’s perspectives, which is essential for improving adherence to initiated interventions and for understanding when and how support should be offered. The multidisciplinary composition of the research team, with diverse professional backgrounds and experiences, strengthens and validates the final analysis. However, the study also has limitations. Of the 29 families who participated in the FTI intervention, 13 were interviewed. This was because rather than including all families, the interviews were conducted with a strategic selection of participants to capture variation in experiences. However, this selective approach also constitutes a limitation, as the findings may not fully reflect the perspectives of all families involved in the intervention, and the number of children interviewed was relatively small compared to the number of adults. The sample consisted of families who had both initiated and completed FTI, which may limit insights into barriers faced by those who declined or discontinued support. Additionally, the interviews were conducted in mixed formats. Only one interview included the whole family, while the remaining sessions were primarily dyadic interviews, most often with parents. Family interviews risk mutual influence among members, although they also provide an opportunity to capture a shared family perspective. Individual interviews, on the other hand, allow for more in-depth questions and yield richer, more nuanced data. CONCLUSIONS This study shows that psychosocial support, such as FTI, should be integrated into the child’s care plan and tailored to each family member’s specific needs. For families to be able to initiate FTI, it is important that HSWs and other healthcare professionals consider when the family is ready to receive support and where the sessions should take place. It is likely that the families might have found initiating and completing FTI easier if the support had been provided at home. Hospital settings need additional resources to promote continuity and to support openness and trust in care relationships, factors that are crucial for families to be able to participate meaningfully in psychosocial support (FTI) and navigate the entire care process when a child in the family has palliative care needs. Relational and interpersonal aspects are central not only to children’s sense of security and willingness to engage, but also to parents’ ability to support their child while managing their own emotional responses. Abbreviations FTI Family Talk Intervention HSW Hospital Social Worker Declarations Ethics approval and consent to participate Oral and written information was provided by the HSWs and the researchers. Participants were informed that participation could be discontinued at any time without explanation. Written consent was obtained from all participants before inclusion in the study. Informed consent for children under 15 years was obtained from their guardian(s). Ethical approval was obtained from the Swedish Ethical Review Authority (Dnr 2020–06340, 2021–02740, 2021–04686). Consent for publication Not applicable Clinical trial number Not applicable Competing interests The authors declare that they have no conflict of interest. Funding The study was financed by grants from the Swedish Childhood Cancer Fund (TJ2022-0028), the Swedish Research Council (2021 − 00999), the Swedish Research Council for Health, Working Life and Welfare (2021 − 00260), and the Swedish state under the agreement between the Swedish government and the county councils, the ALF-agreement (RS2022-0674). Author Contribution All authors contributed to designing and conceptualizing the study. Data collection was conducted by KI and MH. Analyses were undertaken by all authors. The initial drafting of the manuscript was performed by CW. All authors reviewed, revised, and approved the final version of the manuscript. Acknowledgments We would like to sincerely thank all the families who participated in this study and dedicated their time to being interviewed. We greatly value the insights and experiences that family members have generously shared with us. Data Availability To ensure participant confidentiality, the datasets generated and analyzed during the current study are not publicly accessible, but can be made available from the corresponding author upon reasonable request. References Hjelmstedt S, Forinder U, Norberg A, Hovén E. A Balancing Act: Working and Caring for a Child with Cancer. J Child Fam stud 2021;30. Ivéus K, Holm M, Kreicbergs U, Udo C, Lövgren M. Parents' Long-Term Retention of the Family Talk Intervention in Pediatric Oncology. J Pediatr Hematol Oncol Nurs. 2025;42(3):120–8. Carlsen LT, Christensen SR, Olesen SP. Adaption strategies used by siblings to childhood cancer patients. Psychooncology. 2019;28(7):1438–44. White Makinde K, Silverstein A, Peckham-Gregory E, Kim E, Casas J. Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life. J Pain Symptom Manage. 2024;68(4):410–20. Areia NP, Góngora JN, Major S, Oliveira VD, Relvas AP. 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A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses. J Pediatr Nurs. 2018;38:88–98. Lewandowska A. Parents and Their Children in the Face of Cancer: Parents' Expectations, Changes in Family Functioning in the Opinion of Caregivers of Children with Neoplastic Diseases-Further Studies. Child (Basel) 2022;9(10). van der Geest IM, van den Heuvel-Eibrink MM, van Vliet LM, Pluijm SM, Streng IC, Michiels EM, Pieters R, Darlington AS. Talking about Death with Children with Incurable Cancer: Perspectives from Parents. J Pediatr. 2015;167(6):1320–6. Eklund R, Kreicbergs U, Alvariza A, Lövgren M. Children's Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness. J Fam Nurs. 2020;26(2):102–10. Zhang M, Li H, Li F, Zhang Y. Facilitators and barriers to parent-child communication in pediatric palliative care: An integrative review. Int J Nurs Sci. 2024;11(4):495–503. Son H, Haase JE, Docherty SL. The Concept of Double Protection in the Childhood Cancer Context. Cancer Nurs. 2023;46(5):335–43. Beardslee WR. When a parent is depressed: how to protect your children from the effects of depression in the family.2002. Lövgren M, Udo C, Kreicbergs U. Is the family talk intervention feasible in paediatric oncology? An evaluation of a family-based psychosocial intervention. Acta Paediatr. 2022;11(3):684–92. Hocking MC, Kazak AE, Schneider S, Barkman D, Barakat LP, Deatrick JA. Parent perspectives on family-based psychosocial interventions in pediatric cancer: a mixed-methods approach. Support Care Cancer. 2014;22(5):1287–94. Curran GM, Bauer M, Mittman B, Pyne JM, Stetler C. Effectiveness-implementation hybrid designs: combining elements of clinical effectiveness and implementation research to enhance public health impact. Med Care. 2012;50(3):217–26. Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, Drake R, Friedrichsdorf S, Garros D, Giacomelli L, et al. International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. J Pain Symptom Manag. 2022;63(5):e529–43. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101. Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Res Sport Exerc Health. 2019;11(4):589–97. Braun V, Clarke V. What can thematic analysis offer health and wellbeing researchers? Int J Qual Stud Health Well-being. 2014;9:26152. Cancercentrum R. National Clinical Guideline for Paediatric Palliative Care (Sweden): Nationellt vårdprogram för palliativ vård av barn. Regionala Cancercentrum; 2023. https://kunskapsbanken.cancercentrum.se/globalassets/cancerdiagnoser/barn/vardprogram/nationellt-vardprogram-palliativ-vard-av-barn.pdf . Coelho A, Silva C, Barbosa A. Portuguese validation of the Prolonged Grief Disorder Questionnaire–Predeath (PG–12): Psychometric properties and correlates. Palliat Supportive Care. 2017;15(5):544–53. Aoun SM, Stegmann R, Deleuil R, Momber S, Cuddeford L, Phillips MB, Lyon ME, Gill FJ. It Is a Whole Different Life from the Life I Used to Live: Assessing Parents' Support Needs in Paediatric Palliative Care. Child (Basel). 2022;9(3). Ågren A, Holmberg B. How social workers are positioned and constructed as contributors within national palliative care policies in Sweden: a policy analysis. Palliat Care Soc Pract. 2024;18:26323524241289601. Hamdan Alshehri H, Olausson S, Öhlén J, Wolf A. Factors influencing the integration of a palliative approach in intensive care units: a systematic mixed-methods review. BMC Palliat Care. 2020;19(1):113. Ljungholm L, Klinga C, Edin-Liljegren A, Ekstedt M. What matters in care continuity on the chronic care trajectory for patients and family carers?-A conceptual model. J Clin Nurs. 2022;31(9–10):1327–38. Nikfarid L, Rassouli M, Shirinabadi Farahani A, Beykmirza R, Khoubbin Khoshnazar TA. Perspectives of Afghan refugee mothers on the experience of caring for a child with cancer: a qualitative analysis. East Mediterr Health J. 2020;26(6):680–6. Webster M. Siblings' caring roles in families with a child with epilepsy. Sociol Health Illn. 2018;40(1):204–17. Olson LM, Perry GN, Yang S, Galyean PO, Zickmund SL, Sorenson S, Pinto NP, Maddux AB, Watson RS, Fink EL. Parents' Experiences Caring for a Child after a Critical Illness: A Qualitative Study. J Pediatr Intensive Care. 2024;13(2):127–33. Van Schoors M, De Mol J, Morren H, Verhofstadt LL, Goubert L, Van Parys H. Parents' Perspectives of Changes Within the Family Functioning After a Pediatric Cancer Diagnosis: A Multi Family Member Interview Analysis. Qual Health Res. 2018;28(8):1229–41. Borrescio-Higa F, Valdés N. The Psychosocial Burden of Families with Childhood Blood Cancer. Int J Environ Res Public Health 2022;19(1). Holm M, Lundberg T, Lövgren M, Ljungman L. Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention. Pediatr Blood Cancer. 2024;71(1):e30709. Ringnér A, Karlsson S, Hällgren Graneheim U. A person-centred intervention for providing information to parents of children with cancer. Experiences and effects. Eur J Oncol Nurs. 2015;19(3):318–24. Stein A, Dalton L, Rapa E, Bluebond-Langner M, Hanington L, Stein KF, Ziebland S, Rochat T, Harrop E, Kelly B, et al. Communication with children and adolescents about the diagnosis of their own life-threatening condition. Lancet. 2019;393(10176):1150–63. Weiner C, Pergert P, Castor A, Molewijk B, Bartholdson C. Children's voices on their values and moral dilemmas when being cared and treated for cancer- a qualitative interview study. BMC Med Ethics. 2024;25(1):75. Weiner C, Pergert P, Castor A, Molewijk B, Bartholdson C. Sheltering in chaos: parents’ experiences when facing moral challenges in childhood cancer care. Ethics Behav 2023;1–14. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 16 Apr, 2026 Reviewers agreed at journal 14 Apr, 2026 Reviewers invited by journal 07 Apr, 2026 Editor invited by journal 16 Mar, 2026 Editor assigned by journal 16 Mar, 2026 Submission checks completed at journal 16 Mar, 2026 First submitted to journal 13 Mar, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {\"props\":{\"pageProps\":{\"initialData\":{\"identity\":\"rs-9115579\",\"acceptedTermsAndConditions\":true,\"allowDirectSubmit\":false,\"archivedVersions\":[],\"articleType\":\"Research Article\",\"associatedPublications\":[],\"authors\":[{\"id\":619075007,\"identity\":\"c626f921-12ef-44e1-841c-8a631303abbb\",\"order_by\":0,\"name\":\"Charlotte Weiner\",\"email\":\"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA9ElEQVRIiWNgGAWjYDACCSB+AOMkADE/D2MDYS0JDAYScC2SPSRpAQGDMwTcxT+7+dmHhIo/dfwMPIYPHu6wyTc+c7iB8UcFHkvuHDOekXDGQEKygcfYIPFMmuW2s40NzDx4rDKQSDBmSGwzkDA4wLtNIrHtsIHZecYGZsY2fFrSP4O12B/g3f4jse2/gXE/YwPjz3/4tORAbWHg3QZkHDAw4G1sYOBtwOOXGznFDAlnjCVnHOb/DHRYsoHEmYMNh3mO4dbCPyN9M8OHCjl+/va2xI8/2+wM+HvSHz78UYNbCwIwI7EPEKNhFIyCUTAKRgFuAADR801+oUHM3gAAAABJRU5ErkJggg==\",\"orcid\":\"\",\"institution\":\"Karolinska Institutet\",\"correspondingAuthor\":true,\"prefix\":\"\",\"firstName\":\"Charlotte\",\"middleName\":\"\",\"lastName\":\"Weiner\",\"suffix\":\"\"},{\"id\":619075008,\"identity\":\"93082cce-aa50-48e6-aa73-14c7bd41e4d1\",\"order_by\":1,\"name\":\"Kerstin Iveus\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Marie Cederschiöld University\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Kerstin\",\"middleName\":\"\",\"lastName\":\"Iveus\",\"suffix\":\"\"},{\"id\":619075009,\"identity\":\"346b0030-fa4e-4d2e-989a-62be69442d35\",\"order_by\":2,\"name\":\"Camilla Udo HSW\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Dalarna University\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Camilla\",\"middleName\":\"Udo\",\"lastName\":\"HSW\",\"suffix\":\"\"},{\"id\":619075010,\"identity\":\"a0a48b8b-0f55-4d5e-b6a7-4c07f621ed71\",\"order_by\":3,\"name\":\"Maja Holm\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Marie Cederschiöld University\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Maja\",\"middleName\":\"\",\"lastName\":\"Holm\",\"suffix\":\"\"},{\"id\":619075011,\"identity\":\"5bce572d-5106-4f85-bdc8-16cf1d19dc00\",\"order_by\":4,\"name\":\"Lena Anmyr\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Karolinska University Hospital\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Lena\",\"middleName\":\"\",\"lastName\":\"Anmyr\",\"suffix\":\"\"},{\"id\":619075012,\"identity\":\"97d3ff6b-83b3-4c8c-a11e-a57aa450cd48\",\"order_by\":5,\"name\":\"Malin Lövgren\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"Marie Cederschiöld University\",\"correspondingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Malin\",\"middleName\":\"\",\"lastName\":\"Lövgren\",\"suffix\":\"\"}],\"badges\":[],\"createdAt\":\"2026-03-13 14:08:39\",\"currentVersionCode\":1,\"declarations\":\"\",\"doi\":\"10.21203/rs.3.rs-9115579/v1\",\"doiUrl\":\"https://doi.org/10.21203/rs.3.rs-9115579/v1\",\"draftVersion\":[],\"editorialEvents\":[],\"editorialNote\":\"\",\"failedWorkflow\":false,\"files\":[{\"id\":106871400,\"identity\":\"1971cf9f-c82a-4191-bb12-150be33cb1be\",\"added_by\":\"auto\",\"created_at\":\"2026-04-14 09:47:23\",\"extension\":\"png\",\"order_by\":1,\"title\":\"Figure 1\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":129762,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003e\\u003cstrong\\u003eAnalytical map – \\u003c/strong\\u003eIllustrates the related factors that facilitated or challenged family members in initiating FTI, and formed the basis for the construction of the themes.\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"1.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-9115579/v1/40378ddcfde58c14e7ccb2d5.png\"},{\"id\":106871399,\"identity\":\"4831e013-3004-4244-9c32-ea95954d5450\",\"added_by\":\"auto\",\"created_at\":\"2026-04-14 09:47:23\",\"extension\":\"png\",\"order_by\":2,\"title\":\"Figure 2\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":127577,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003e\\u003cstrong\\u003eAnalytical map – \\u003c/strong\\u003eIllustrates the related factors that facilitated or challenged family members in completing FTI, and formed the basis for the construction of the themes.\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"2.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-9115579/v1/710b17d6c2e902de2dd84e4c.png\"},{\"id\":106960993,\"identity\":\"27aba79d-596c-49a6-9a9b-23f2c51b9ad1\",\"added_by\":\"auto\",\"created_at\":\"2026-04-15 09:23:55\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"manuscript-pdf\",\"size\":969780,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"manuscript.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-9115579/v1/51197e41-ad5a-4182-a50d-10da3dbac9e5.pdf\"}],\"financialInterests\":\"No competing interests reported.\",\"formattedTitle\":\"Family members’ reasons for initiating and completing the Family Talk Intervention when a child has palliative care needs – an interview study\",\"fulltext\":[{\"header\":\"BACKGROUND\",\"content\":\"\\u003cp\\u003eFamilies with children in need of palliative care face various psychosocial challenges, including stress [\\u003cspan class=\\\"CitationRef\\\"\\u003e1\\u003c/span\\u003e]. Previous research reveals that open family communication enhances family well-being by reducing psychosocial stress [\\u003cspan class=\\\"CitationRef\\\"\\u003e2\\u003c/span\\u003e–\\u003cspan class=\\\"CitationRef\\\"\\u003e5\\u003c/span\\u003e]. Other studies have shown that both children and parents express a desire for psychosocial support when a family member has palliative care needs [\\u003cspan class=\\\"CitationRef\\\"\\u003e3\\u003c/span\\u003e, \\u003cspan class=\\\"CitationRef\\\"\\u003e6\\u003c/span\\u003e].\\u003c/p\\u003e \\u003cp\\u003eResearch shows that parents who have a child with a severe illness, including palliative care needs, commonly describe emotional burdens and a loss of control over the situation [\\u003cspan class=\\\"CitationRef\\\"\\u003e7\\u003c/span\\u003e]. Emotional burdens are often related to increased concerns about the disease and the treatment; they can experience both a lack of information and information overload [\\u003cspan class=\\\"CitationRef\\\"\\u003e8\\u003c/span\\u003e], which causes anxiety and everyday uncertainty [\\u003cspan class=\\\"CitationRef\\\"\\u003e9\\u003c/span\\u003e, \\u003cspan class=\\\"CitationRef\\\"\\u003e10\\u003c/span\\u003e]. Due to the emotional burdens, parents often avoid communicating about the disease within the family in the hope of protecting their children and themselves from further stress [\\u003cspan class=\\\"CitationRef\\\"\\u003e8\\u003c/span\\u003e, \\u003cspan class=\\\"CitationRef\\\"\\u003e11\\u003c/span\\u003e]. Likewise, research reveals that children with cancer tend to protect their parents from increased burdens by avoiding questions about the illness [\\u003cspan class=\\\"CitationRef\\\"\\u003e3\\u003c/span\\u003e, \\u003cspan class=\\\"CitationRef\\\"\\u003e12\\u003c/span\\u003e]. The withholding of emotions and the persistence of unaddressed concerns, resulting from the phenomenon of ‘double protection’, have been shown to adversely affect family communication [\\u003cspan class=\\\"CitationRef\\\"\\u003e13\\u003c/span\\u003e, \\u003cspan class=\\\"CitationRef\\\"\\u003e14\\u003c/span\\u003e].\\u003c/p\\u003e \\u003cp\\u003eGiven the detrimental effects that a serious illness affecting one family member can impose on the entire family, it is imperative that support is directed towards the family as a whole [\\u003cspan class=\\\"CitationRef\\\"\\u003e5\\u003c/span\\u003e]. In order to ensure that family members have access to structured psychosocial support on equal terms, a family-centered intervention, the Family Talk intervention (FTI), originally used in psychiatric contexts [\\u003cspan class=\\\"CitationRef\\\"\\u003e15\\u003c/span\\u003e], has been evaluated in Swedish care settings where a family member, including children, has palliative care needs. FTI focuses primarily on facilitating family communication about illness-related subjects, with the family’s own narratives playing a central role. FTI also aims to support parenting and make the children’s needs visible. Moreover, FTI emphasizes the children’s voices when problematic situations within the family are raised, facilitating the sharing of experiences and highlighting the diverse perspectives of all family members [\\u003cspan class=\\\"CitationRef\\\"\\u003e16\\u003c/span\\u003e].\\u003c/p\\u003e \\u003cp\\u003e However, limited knowledge exists regarding the factors that motivate or hinder families in participating in family support programs, such as FTI, during the ongoing care of children with severe illnesses. Despite the acknowledged value of psychosocial support being integrated early in care, some research shows that in the phase immediately after diagnosis, there may be obstacles to the implementation of psychosocial interventions because families are often dealing with intensive medical treatment and elevated psychological strain [\\u003cspan class=\\\"CitationRef\\\"\\u003e17\\u003c/span\\u003e]. It is therefore important to explore the perspectives of all family members which may reveal factors that facilitate or hinder their initiation and completion of family support, such as FTI. This would increase understanding and enable the tailoring of family support in this context.\\u003c/p\\u003e\\n\\u003ch3\\u003eAIM\\u003c/h3\\u003e\\n\\u003cp\\u003eTo explore family members’ reasons for initiating and completing a psychosocial support intervention, FTI, when a child in the family has a severe illness and is receiving palliative care in a pediatric hospital setting.\\u003c/p\\u003e\\n\"},{\"header\":\"METHODS\",\"content\":\"\\u003ch2\\u003eDesign\\u003c/h2\\u003e\\u003cp\\u003eThis interview study derives from an effectiveness-implementation hybrid type 2 study design [\\u003cspan class=\\\"CitationRef\\\"\\u003e18\\u003c/span\\u003e] where FTI was carried out with families in which a child had palliative care needs. It includes interviews with parents, ill children, and siblings after having completed FTI.\\u003c/p\\u003e\\u003ch3\\u003eEducation and recruitment\\u003c/h3\\u003e\\u003cp\\u003eHospital Social workers (HSWs) permanently employed at a children’s hospital or a children’s hospice in Sweden received FTI education and training from February 2021 to January 2022 (n = 15). This included 10 lectures and was led by two HSWs with extensive experience of using FTI. The first part of the education involved theory and role play while the second part focused on practical training during 30 hours of supervision, including conducting FTI with at least one family under supervision.\\u003c/p\\u003e\\u003ch3\\u003eParticipants\\u003c/h3\\u003e\\u003cp\\u003eThe inclusion criteria for participating in FTI were families with a child with a severe illness aged up to 18 years. An exclusion criterion was non-Swedish speaking families. The selection of families for interviews was purposive, aiming to ensure representation of different medical conditions, in line with the definition described by Benini et al. [\\u003cspan class=\\\"CitationRef\\\"\\u003e19\\u003c/span\\u003e]. The recruitment of families by HSWs started in April 2022 and continued until December 2024; a total of 32 families were recruited. Three families withdrew prior to the start of the study for various reasons; 29 families therefore participated in the FTI intervention. One family discontinued participation for an unknown reason. In total, 28 families completed FTI. Of these, 13 were interviewed. The entire family or part of the family could participate, but at least two family members needed to be included. The family defined the members, which means that all types of family members were eligible for participation.\\u003c/p\\u003e\\u003cp\\u003eAfter completion of FTI, a selection of families was interviewed (n = 13) based on the ambition to include variety, e.g., different diagnoses, family compositions, and age of children. In total, 26 parents and two other significant adults, five ill children, and nine siblings were interviewed. The interviews were conducted by two researchers (KI and MH), both with extensive experience of working with families affected by severe illness, and were carried out in a format and location chosen by the family, either video format or in the family’s home.\\u003c/p\\u003e\\u003cp\\u003eFor adults, a semi-structured interview guide was used. The interviews involved questions regarding their perception of the structure, content and procedure during their participation in FTI. The adult interviews lasted 13–59 minutes (mean 32 minutes) and were recorded and transcribed verbatim. The interviews with parents/other significant adults were conducted as dyad interviews with a few exceptions, such as where the parent was a single parent, or the significant adult was an aunt, or when one parent suddenly needed to go to the hospital with the ill child.\\u003c/p\\u003e\\u003cp\\u003eThe children were interviewed individually except for two siblings who chose to be interviewed together. Most children were interviewed in their home, except for two: one opted for a neutral location and the other chose a video format. At the start of the interview, the children were informed about the procedure for the interview, which was referred to as the \\\"game rules\\\". This included assurances that they could stop the interview at any time or decline to answer questions, to ensure their comfort during the process. The children were then asked about their perceptions of participating in FTI, focusing on the content and structure of the intervention, as well as their retention of key elements, such as being open about thoughts and feelings. The interviews lasted between 6 and 30 minutes, with an average duration of 16 minutes.\\u003c/p\\u003e\\u003cdiv class=\\\"gridtable\\\"\\u003e\\u003cdiv align=\\\"left\\\" class=\\\"colspec\\\"\\u003e\\u003c/div\\u003e\\u003cdiv align=\\\"left\\\" class=\\\"colspec\\\"\\u003e\\u003c/div\\u003e\\u003ctable id=\\\"Tab1\\\" border=\\\"1\\\"\\u003e \\u003ccaption\\u003e \\u003cdiv class=\\\"CaptionNumber\\\"\\u003eTable 1\\u003c/div\\u003e \\u003cdiv class=\\\"CaptionContent\\\"\\u003e \\u003cp\\u003eBackground characteristics of parents, children, and other significant adults.\\u003c/p\\u003e \\u003c/div\\u003e \\u003c/caption\\u003e \\u003ccolgroup cols=\\\"2\\\"\\u003e \\u003c/colgroup\\u003e \\u003cthead\\u003e \\u003ctr\\u003e \\u003cth align=\\\"left\\\"\\u003e \\u003cp\\u003eTotal interviewed, n (%)\\u003c/p\\u003e \\u003c/th\\u003e \\u003cth align=\\\"left\\\"\\u003e \\u003cp\\u003en = 40 (100)\\u003c/p\\u003e \\u003c/th\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003cth align=\\\"left\\\"\\u003e \\u003cp\\u003eGender\\u003c/p\\u003e \\u003c/th\\u003e \\u003cth align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/th\\u003e \\u003c/tr\\u003e \\u003c/thead\\u003e \\u003ctbody\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eFemale\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e20 (50.0)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eMale\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e19 (37.5)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eOther\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e1 (2.5)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003eAge\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eParents/other significant adults, Mean (SD) [min-max]\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e46 (7.6) [33–59]\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eChildren\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e9.9 (2.8) [\\u003cspan class=\\\"CitationRef\\\"\\u003e6\\u003c/span\\u003e–\\u003cspan class=\\\"CitationRef\\\"\\u003e16\\u003c/span\\u003e]\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003eEducational level, adults n (%)\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003e26 (100)\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eUniversity\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e16 (62)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eUpper secondary school\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e8 (31)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003ePrimary school\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e-\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eOther\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e2 (7,5)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003eLiving with partner n (%)\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003e26 (100)\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eYes\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e24 (92)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eNo\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e2 (8)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003eIll child’s condition* (parent’s report) n (%)\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e\\u003cb\\u003e13 (100)\\u003c/b\\u003e\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eGroup 1 (e.g., cancer)\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e7 (54)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eGroup 2 (e.g., cystic fibrosis)\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e3 (23)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eGroup 3 (e.g., chromosomopathies)\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e2 (15)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eGroup 4 (e.g., severe brain injury)\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e1 (8)\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003ctr\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003eGroup 5 (e.g., unborn children or premature infants)\\u003c/p\\u003e \\u003c/td\\u003e \\u003ctd align=\\\"left\\\"\\u003e \\u003cp\\u003e-\\u003c/p\\u003e \\u003c/td\\u003e \\u003c/tr\\u003e \\u003c/tbody\\u003e \\u003ctfoot\\u003e \\u003ctr\\u003e\\u003ctd colspan=\\\"2\\\"\\u003e*Child’s condition based on the international standard by Benini et al. [\\u003cspan class=\\\"CitationRef\\\"\\u003e19\\u003c/span\\u003e]\\u003c/td\\u003e\\u003c/tr\\u003e \\u003c/tfoot\\u003e \\u003c/table\\u003e\\u003c/div\\u003e\\u003cp\\u003e\\u003c/p\\u003e\\u003ch3\\u003eAnalysis\\u003c/h3\\u003e\\u003cp\\u003eThe structure of the analysis process was guided by Braun and Clarke’s six steps of inductive (data-driven) qualitative thematic analysis [\\u003cspan class=\\\"CitationRef\\\"\\u003e20\\u003c/span\\u003e] using a reflexive approach, where the researcher is active, reflective, and creative in the interpretation of themes [\\u003cspan class=\\\"CitationRef\\\"\\u003e21\\u003c/span\\u003e, \\u003cspan class=\\\"CitationRef\\\"\\u003e22\\u003c/span\\u003e]. Reflexivity acknowledges how prior experiences and knowledge of caring for children with severe illnesses shape interpretation. Recognizing these influences - professional, emotional, and ethical - ensures transparency and strengthens analytical credibility throughout the following steps. 1) Familiarization with the data was achieved by the first author (CW) repeatedly reading the interview transcripts in their entirety. 2) Significant data, i.e., central concepts and recurring patterns from the transcripts, were identified and organized into codes. 3) Codes were then sorted into potential themes related to the families’ descriptions of their reasons for initiating FTI and facilitating factors and challenges in completing FTI. 4) CW reflectively reviewed the preliminary themes by thoroughly reading and comparing all codes with all transcripts to confirm thematic validity and define meaning-making themes. 5) CW then structured and named the themes, discussed them with the authors KI, ML, and CU, and revised them. 6) Finally, the report was written by CW and reviewed by all authors prior to submission. Selected segments of transcripts were used to illustrate the families’ descriptions.\\u003c/p\\u003e\"},{\"header\":\"RESULTS\",\"content\":\"\\u003cp\\u003eThe analysis generated five themes that together illuminate families\\u0026rsquo; reasons for initiating and completing FTI. Two themes captured the motivations for initiating FTI: \\u003cem\\u003eThe family members\\u0026rsquo; well‑being and life situation\\u003c/em\\u003e, which influenced whether they felt able to engage with the intervention, and \\u003cem\\u003eThe timing of and information about FTI\\u003c/em\\u003e, which stresses how relevant the intervention appeared for the families when it was offered (Fig.\\u0026nbsp;1). Three additional themes described why families chose to continue and complete FTI: \\u003cem\\u003eEveryday logistics\\u003c/em\\u003e, reflecting how practical conditions enabled or hindered ongoing participation; \\u003cem\\u003eThe structure and content of FTI\\u003c/em\\u003e, which affected how supportive the intervention felt; and \\u003cem\\u003eThe HSW\\u0026rsquo;s approach\\u003c/em\\u003e, where the professionals\\u0026rsquo; competence, and relational engagement played a central role in sustaining families\\u0026rsquo; motivation (Fig.\\u0026nbsp;2)\\u003c/p\\u003e\\n\\u003ch3\\u003eFamilies’ reasons for initiating FTI \\u003c/h3\\u003e\\n\\u003cp\\u003e \\u003cb\\u003eFigure 1. Analytical map \\u0026ndash;\\u003c/b\\u003e Illustrates the related factors that facilitated or challenged family members in initiating FTI, and formed the basis for the construction of the themes.\\u003c/p\\u003e\\n\\u003ch3\\u003eThe family members’ well-being and life situation\\u003c/h3\\u003e\\n\\u003cp\\u003eWhen FTI was offered, a reason for families agreeing to take part was their hope of receiving adequate psychosocial support, largely due to the absence of being offered other counselling support from the healthcare services. As one mother said: \\u003cem\\u003e\\u0026ldquo;So we asked for counselling from the very beginning, mostly just to be able to sit and bring up everything that you want to say.\\u0026rdquo;\\u003c/em\\u003e Other motivating factors for initiating FTI, especially for siblings and parents, were the opportunity to share emotions and to have dedicated time together to do so.\\u003c/p\\u003e \\u003cp\\u003eChildren highlighted their concerns about the family\\u0026rsquo;s emotional well-being as a reason for engaging in FTI. Similarly, parents were driven by the worry that their children, particularly siblings, were not receiving sufficient support.\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003e\\u003cem\\u003e\\u0026rdquo;... Yes, but we thought that was great because we had also asked for it [psychosocial support for the children], and it\\u0026rsquo;s something we\\u0026rsquo;ve never been able to get - someone who can talk to our children. That has been completely impossible. So, I thought\\u0026hellip; that was perhaps the absolute main reason why we wanted to participate, also so that they would have an opportunity to make themselves heard.\\u0026rdquo;\\u003c/em\\u003e (Mother, family 5)\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003cp\\u003e Additionally, some parents emphasized that the need for structure and stability in their life situation was a motivating factor. They viewed FTI as a way to establish routines and receive external guidance - someone to \\u003cem\\u003e\\u0026ldquo;help us keep things together\\u0026rdquo;\\u003c/em\\u003e and attend to the family\\u0026rsquo;s needs. Several parents also hoped that FTI would support them in reconnecting as a couple. For some, the fact that FTI was a research project further motivated them to engage in the intervention.\\u003c/p\\u003e \\u003cp\\u003eHowever, family members expressed various concerns that FTI could become too burdensome because of the ill child\\u0026rsquo;s well-being, e.g., distressing symptoms, which isolated the family and made life inflexible. Some of the ill children, out of consideration for their families, did not want them to spend more time at the hospital than necessary, and found it problematic that the intervention was offered there. Among the parents, other barriers to initiating FTI were related to their own health and life situation, e.g., psychological shock, cognitive fatigue, and difficulty processing information were commonly reported, making the initiation of FTI feel overwhelming due to lack of time and energy.\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003e \\u003cem\\u003e\\u0026ldquo;No, but I\\u0026rsquo;m in a state of shock myself, so of course I react like that\\u0026hellip; \\u0026hellip;And on the way down, we kind of go into\\u0026hellip; defense mechanisms kick in so that you find a defensive position of: \\u0026lsquo;How are we going to get through this? We have to solve the practical things, like you sort of go down into the mine.\\u0026rdquo;\\u003c/em\\u003e (Father, family 20)\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003cdiv id=\\\"Sec11\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eThe timing and place of and information about FTI\\u003c/h2\\u003e \\u003cp\\u003eFamily members emphasized that the timing of when FTI was offered played a role in them initiating FTI or not. For example, due to different needs in relation to the child\\u0026rsquo;s illness period, some family members experienced that FTI being offered early was motivating, while others experienced this as challenging.\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003e \\u003cem\\u003e\\u0026rdquo;\\u003c/em\\u003e The mother: \\u003cem\\u003eI think it [FTI] should have come a little earlier.\\u003c/em\\u003e\\u003c/p\\u003e\\u003cp\\u003eThe father: \\u003cem\\u003e\\u0026ldquo;I thought it came at quite a good time, actually. If it had come right at the beginning \\u0026ndash; I mean, the emotions need time to settle \\u0026ndash; it would have been like\\u0026hellip; yes, like a car whizzing past at a pedestrian crossing, so fast that you don\\u0026rsquo;t even have time to see it. So, I think it was quite good that we didn\\u0026rsquo;t start the day after the diagnosis, but that it took a little while.\\u0026rdquo;\\u003c/em\\u003e (Parents in family 37).\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003cp\\u003eFor family members, clear information about the purpose of FTI influenced the decision to start the intervention. At the same time, barriers to starting included lack of coordination on the ward, for example healthcare professionals not being aware of the ongoing support available from the HSW.\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003e\\u0026hellip;\\u0026rdquo; \\u003cem\\u003eAnd what I think is a pity was actually that we were about to say no, because it\\u0026hellip; how should I put it, it wasn\\u0026rsquo;t really marketed correctly, but it was when [our HSW] took the time and actually caught up with you [the father].\\u0026rdquo;\\u003c/em\\u003e (Mother, family 6)\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003cp\\u003e Some parents felt that the option to conduct FTI at the hospital was a motivating factor for initiating FTI due to feelings of safety and accessibility.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec12\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eFamilies\\u0026rsquo; reasons for completing FTI \\u003c/h2\\u003e \\u003cp\\u003e \\u003cb\\u003eFigure 2. Analytical map \\u0026ndash;\\u003c/b\\u003e Illustrates the related factors that facilitated or challenged family members in completing FTI, and formed the basis for the construction of the themes.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec13\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eEveryday logistics\\u003c/h2\\u003e \\u003cp\\u003e The parents reported that completing FTI was facilitated by the logistical support they received from the HSW during the sessions, including tools to manage the crisis and their parenting role, as well as help in coordinating healthcare contacts. Completing FTI was further facilitated when parents received encouragement and practical support from other family members, including extended relatives.\\u003c/p\\u003e \\u003cp\\u003e Parents experienced challenges in coordinating FTI sessions around the ill child\\u0026rsquo;s treatments and everyday routines, further complicated by the fact that the intervention could not be provided in their home. A couple of children felt that FTI interfered with their daily activities and school commitments. However, the option to conduct sessions online was seen as helpful, even though some families faced technical issues or poor internet connections, which challenged completion of FTI. A clear factor facilitating the families\\u0026rsquo; completion of FTI was when sessions could be aligned with other healthcare appointments.\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003eThe mother: \\u003cem\\u003e\\u0026ldquo;Yes it was a bit tricky, we live quite far away [from the hospital] and we also have a lot of different visits, but we had a bit of a hard time matching those calls with our other schedules, so it was a bit back and forth and extra travel and such...\\u0026rdquo;\\u003c/em\\u003e The father: \\u003cem\\u003e\\u0026ldquo;Yes, but we managed to time some calls as well... Yes, co-book with other \\u0026lsquo;things\\u0026rsquo;...\\u0026rdquo;\\u003c/em\\u003e (Parents, family 5)\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003cp\\u003eAdditional logistical challenges for parents included the hierarchical structure of the healthcare setting, for example when physicians\\u0026rsquo; ward rounds were prioritized over the scheduled FTI sessions.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec14\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eThe structure and content of FTI\\u003c/h2\\u003e \\u003cp\\u003eFamily members found the structure of FTI to be both clear and unclear, which affected their experience of how easy or difficult it was to complete. The families appreciated the well-balanced topics, which were thoughtfully structured and set FTI apart from other psychosocial interventions. For example, FTI supported them in managing everyday concerns while also staying aligned with the child\\u0026rsquo;s care plan. The families expressed that completion was facilitated by the whole family being allowed to participate in FTI, including siblings and extended family members. The structured format was also seen as beneficial for siblings, offering space to discuss topics beyond the illness. It was also facilitating when children could determine their own level of participation, such as choosing whether or not to answer certain questions. Some families expressed that \\u0026ldquo;the family talk\\u0026rdquo; (meeting 5) allowed questions to be asked of the children without causing conflict. However, one family described how \\u0026ldquo;the family talk\\u0026rdquo; triggered internal conflicts.\\u003c/p\\u003e \\u003cp\\u003eWhile some family members experienced the absence of time pressure during the sessions as facilitating, others thought that the allotted time was insufficient, which was perceived as challenging. Furthermore, conflicting experiences emerged regarding the intervals between the FTI sessions. For instance, some family members considered the amount of time between sessions to be appropriate and supportive of the process, while others experienced the method as either too intense and demanding or overly protracted: short intervals felt burdensome, and longer intervals made it difficult to recall previous discussions, both posing challenges to the completion of FTI. At the same time, the opportunity to receive more sessions than originally planned was regarded by several family members as a valued and supportive element that facilitated completion of FTI. However, some family members still experienced challenges when FTI did not meet their needs; for example, when the number of sessions was felt to be too limited.\\u003c/p\\u003e \\u003cp\\u003eOne of the children reported that the individual FTI session was challenging to complete because they wanted their mother to be present. Another child, whose parent was present, expressed that this provided a sense of security and made it easier to speak freely. For some other family members, the expectation that all family members would be willing to talk was perceived as challenging. For example, some children described how they found answering all the questions hard, as one ill child said in the interview:\\u003cem\\u003e\\u0026rdquo;...it was mostly difficult\\u0026hellip;it was a bit boring\\u0026rdquo;.\\u003c/em\\u003e In such situations, the children described that when the HSW used drawing and clay during the sessions it was easier to complete FTI. The fact that another healthcare professional took care of the younger children during the FTI sessions was also a facilitating factor. One parent described that when their ill child appeared satisfied and emerged from a session \\u0026ldquo;radiantly happy\\u0026rdquo; it facilitated the completion of FTI.\\u003c/p\\u003e \\u003cp\\u003e A couple of parents experienced challenges in completing FTI due to uncertainty about whether their children\\u0026rsquo;s needs were being adequately addressed. This was when their children found it difficult to respond or did not actively participate in the family sessions due to a lack of maturity or willingness to participate.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec15\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eThe HSW\\u0026rsquo;s approach\\u003c/h2\\u003e \\u003cp\\u003eMost family members described the HSW\\u0026rsquo;s approach as a factor in the completion of FTI. The HSW\\u0026rsquo;s attentiveness to the children, particularly siblings, was a facilitating factor. When children trusted the HSW, including feeling safe to discuss sensitive topics, it further facilitated the completion of FTI for both children and parents. Children also found the HSW\\u0026rsquo;s kindness and patience to be facilitating, as one sibling explained: \\u003cem\\u003e\\u0026ldquo;She always listened when we talked\\u0026rdquo;.\\u003c/em\\u003e According to parents, the HSW\\u0026rsquo;s professional guidance, accessibility and continuity created security, which was a facilitating factor for the completion of FTI.\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003e\\u003cem\\u003e\\u0026rdquo; We had continuity with the same HSW. She also came in [when we were on another ward] and checked on how we were experiencing things and feeling, and that also created a sense of security and trust\\u0026hellip;\\u0026rdquo;\\u003c/em\\u003e (Parents, family 6)\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003cp\\u003eSome children found it challenging to complete FTI when the HSW failed to arrive on time for scheduled sessions. Similarly, the lack of continuity, such as when the HSW was absent due to illness, was perceived as a challenge, especially by the parents. In one family, a factor complicating the completion of FTI was that the couple felt misunderstood by the HSW, perceiving that the HSW was taking the other parent\\u0026rsquo;s side during the FTI sessions. However, in this case, the HSW invited an additional HSW to take part which facilitated the completion of the FTI. The family members noted that having two HSWs present was beneficial, as it enhanced the focus on the child and the family relationship.\\u003c/p\\u003e \\u003c/div\\u003e\"},{\"header\":\"DISCUSSION\",\"content\":\"\\u003cp\\u003eThe present study contributes insights into how psychosocial interventions, such as FTI, can be adapted to more effectively support families during periods of heightened vulnerability by emphasizing the need for flexible session formats and communication tailored to the child\\u0026rsquo;s emotional and developmental needs.\\u003c/p\\u003e \\u003cp\\u003eThis is one of the first studies to evaluate factors that contribute to initiating participation in and completion of such an intervention. In addition to the limited availability of other\\u003c/p\\u003e \\u003cp\\u003epsychosocial support within health care, facilitating factors for initiating FTI included the family\\u0026rsquo;s need for time together and for creating structure in everyday life. Hindering factors included the child\\u0026rsquo;s symptoms and insufficient information about FTI. Families described factors related to everyday logistics that both facilitated and challenged factors their completion of FTI, such as being able to fit it in around the child\\u0026rsquo;s treatment and the flexibility of the method, particularly regarding the time and place of FTI. The importance of the HSW\\u0026rsquo;s approach and role appeared to be crucial to the families\\u0026rsquo; experiences of safety and trust in the relationship and thereby the completion of FTI.\\u003c/p\\u003e \\u003cp\\u003eAlongside family members\\u0026rsquo; experiences of limited access to psychosocial support at the hospital, a recurring factor motivating them to initiate FTI was their need to promote the family\\u0026rsquo;s relational well-being and maintain structure during the crisis. Although existing guidelines for palliative care emphasize the importance of meeting the psychosocial needs of families and relatives when a child is faced with a life-threatening illness [\\u003cspan citationid=\\\"CR23\\\" class=\\\"CitationRef\\\"\\u003e23\\u003c/span\\u003e], like other research, our results indicate that these support functions are still inadequately prioritized in hospital care. The insufficient availability of psychosocial support in hospitals is well documented and continues to receive attention from research reviews [\\u003cspan citationid=\\\"CR24\\\" class=\\\"CitationRef\\\"\\u003e24\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR25\\\" class=\\\"CitationRef\\\"\\u003e25\\u003c/span\\u003e].\\u003c/p\\u003e \\u003cp\\u003eIt is known that the healthcare organization needs to maintain a biomedical focus, which contributes to psychosocial aspects being seen as secondary rather than as an integral part of the care process [\\u003cspan citationid=\\\"CR26\\\" class=\\\"CitationRef\\\"\\u003e26\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR27\\\" class=\\\"CitationRef\\\"\\u003e27\\u003c/span\\u003e]. Poor cooperation between professions and a lack of resources, where the number of HSWs does not meet the needs of patients [\\u003cspan citationid=\\\"CR26\\\" class=\\\"CitationRef\\\"\\u003e26\\u003c/span\\u003e], can hinder continuity and trust [\\u003cspan citationid=\\\"CR28\\\" class=\\\"CitationRef\\\"\\u003e28\\u003c/span\\u003e]. This contributes to the risk that the provision of information about available support services is lost along the way. Our results clearly show that fragmented care was perceived to lead to a lack of information, insecurity, and uncertainty about the relevance of available support - whether FTI or other psychosocial interventions - which was in turn seen as an obstacle for relatives to engage in FTI. Similarly, research demonstrates that parents under stress may find it difficult to engage with psychosocial support due to not having ways of handling their own situation effectively [\\u003cspan citationid=\\\"CR29\\\" class=\\\"CitationRef\\\"\\u003e29\\u003c/span\\u003e]. This may be due to the caregiving burdens that both siblings and parents experience [\\u003cspan citationid=\\\"CR30\\\" class=\\\"CitationRef\\\"\\u003e30\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR31\\\" class=\\\"CitationRef\\\"\\u003e31\\u003c/span\\u003e], where the prospect of additional healthcare contacts feels overwhelming and difficult to prioritize. When psychosocial support is offered, it is important therefore to take into account that family members and relatives often prioritize the needs of the child with a severe illness over their own; such support needs to be included as an integral part of the child\\u0026rsquo;s care in a way that does not make it feel like a strain.\\u003c/p\\u003e \\u003cp\\u003eFamily members\\u0026rsquo; hopes of promoting the well-being of all members could also be a way to ease any feelings of guilt that may arise in connection with a child\\u0026rsquo;s illness. For example, it has been reported in previous studies that parents of children with severe illnesses experience feelings of guilt, and fear a negative impact on their relationship with the ill child\\u0026rsquo;s siblings [\\u003cspan citationid=\\\"CR32\\\" class=\\\"CitationRef\\\"\\u003e32\\u003c/span\\u003e] and on their couple relationship [\\u003cspan citationid=\\\"CR33\\\" class=\\\"CitationRef\\\"\\u003e33\\u003c/span\\u003e]. Some parents in this study also hoped to receive help in addressing issues in their couple relationship during FTI. Although FTI is not a couple\\u0026rsquo;s intervention, it can facilitate the couple relationship [\\u003cspan citationid=\\\"CR34\\\" class=\\\"CitationRef\\\"\\u003e34\\u003c/span\\u003e] even if more challenging relational problems may need specific couple therapy.\\u003c/p\\u003e \\u003cp\\u003eOur results highlight the family members\\u0026rsquo; varying needs regarding the timing of FTI. In particular, this concerned the initiation of FTI following diagnosis, which created different challenges for family members in engaging with FTI. Participants in our study also expressed diverse preferences regarding the time intervals between sessions and the desired number of sessions. Here, it is important to highlight that the parents in our study often felt that any difficulty in organizing a session was due to the limited availability of the HSW. This raises the question of whether FTI should be continuously available, allowing families to enter and exit the intervention as it suits their situation.This may be seen as an additional reason for introducing family support alongside ongoing hospital care, in particular to ensure that families have the opportunity to reduce their stress and uncertainty, but also to avoid any future psychological issues in the family. Further research on how psychosocial support should be tailored and follow the needs of families as a natural part of care would, therefore, be highly valuable.\\u003c/p\\u003e \\u003cp\\u003eA recurring challenge in completing FTI was that families found it difficult to fit the sessions into their already demanding daily routines at the hospital. They needed to balance being present for the sick child and attending medical appointments, while at the same time supporting other family members. The children also wanted to avoid the family spending more time at the hospital than necessary. This highlights that flexibility regarding access to various support functions, such as childcare or location, or the possibility to offer FTI at home, can be crucial for families being able to participate in and benefit from FTI. Previous studies have also suggested that it would be desirable for FTI to be offered at home.\\u003c/p\\u003e \\u003cp\\u003eFor most family members, the structured format of FTI was perceived as essential to completing the intervention, as it not only provided a safe and predictable environment but also functioned as an anchor in the midst of emotional and practical chaos. By offering a predetermined framework, FTI fostered stability and relief, facilitating discussions beyond the illness and enabling families to reconnect and reflect more intentionally. These observations align with previous research on childhood cancer care, where parents often found open-ended formats challenging and burdensome, struggling to identify relevant topics [\\u003cspan citationid=\\\"CR35\\\" class=\\\"CitationRef\\\"\\u003e35\\u003c/span\\u003e]. Notably, the same study showed that parents prioritized processing their emotions over receiving further medical information, underscoring that the strength of FTI may lie less in knowledge transmission than in its role as a structured and supportive space for emotional processing and meaningful dialogue.\\u003c/p\\u003e \\u003cp\\u003eSome ill children and siblings found it hard to engage in FTI, describing how talking in the sessions was difficult or boring. This may be due to the method not being adapted for children; it might also suggest that the FTI may have been experienced as emotionally demanding by some. These responses invite reflection on the diverse ways in which children cope with illness. As noted in a review study by Stein et al., (2029) limited understanding and lack of awareness of the disease have been shown to support coping among childhood cancer survivors [\\u003cspan citationid=\\\"CR36\\\" class=\\\"CitationRef\\\"\\u003e36\\u003c/span\\u003e]. The same review indicated that, due to parents\\u0026rsquo; expressed worry and discomfort regarding the topic, children may feel inhibited from raising their concerns. From this perspective, children\\u0026rsquo;s reluctance to engage in conversation might be interpreted not merely as disengagement, but rather as a coping strategy to manage the overwhelming nature of illness.\\u003c/p\\u003e \\u003cp\\u003eThe children, in particular, emphasized that it was important that the HSW was kind and that they got to know him or her before they decided to initiate FTI. This feeling of familiarity contributed to their sense of safety and trust, which in turn facilitated the children\\u0026rsquo;s willingness to participate in and complete FTI. The HSW\\u0026rsquo;s accessibility and continuity were also considered important because changes, such as illness or staff turnover, can affect children\\u0026rsquo;s ability to engage and feel safe. This result is in line with recent studies in childhood cancer care, which emphasize that both children and parents value personal relationships and that kindness from healthcare professionals is considered crucial in care [\\u003cspan citationid=\\\"CR37\\\" class=\\\"CitationRef\\\"\\u003e37\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR38\\\" class=\\\"CitationRef\\\"\\u003e38\\u003c/span\\u003e]. Overall, these results suggest that relational and interpersonal aspects of care are central to families\\u0026rsquo; sense of safety and willingness to engage in interventions.\\u003c/p\\u003e \\u003cdiv id=\\\"Sec17\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eStudy strengths and limitations\\u003c/h2\\u003e \\u003cp\\u003eA key strength of the study is its family-centered perspective and that it was conducted in a real palliative care setting, which enhances its relevance and applicability. Another strength is that entire families were interviewed, providing a comprehensive view of family dynamics. Few comparable studies have evaluated psychosocial support from the perspectives of all family members, making this research unique. The study also examines what motivates families to accept support, offering valuable insights for healthcare professionals seeking to engage families who typically decline such interventions. Furthermore, it contributes knowledge about the entire support process from the family\\u0026rsquo;s perspectives, which is essential for improving adherence to initiated interventions and for understanding when and how support should be offered. The multidisciplinary composition of the research team, with diverse professional backgrounds and experiences, strengthens and validates the final analysis.\\u003c/p\\u003e \\u003cp\\u003eHowever, the study also has limitations. Of the 29 families who participated in the FTI intervention, 13 were interviewed. This was because rather than including all families, the interviews were conducted with a strategic selection of participants to capture variation in experiences. However, this selective approach also constitutes a limitation, as the findings may not fully reflect the perspectives of all families involved in the intervention, and the number of children interviewed was relatively small compared to the number of adults. The sample consisted of families who had both initiated and completed FTI, which may limit insights into barriers faced by those who declined or discontinued support. Additionally, the interviews were conducted in mixed formats. Only one interview included the whole family, while the remaining sessions were primarily dyadic interviews, most often with parents. Family interviews risk mutual influence among members, although they also provide an opportunity to capture a shared family perspective. Individual interviews, on the other hand, allow for more in-depth questions and yield richer, more nuanced data.\\u003c/p\\u003e \\u003c/div\\u003e\"},{\"header\":\"CONCLUSIONS\",\"content\":\"\\u003cp\\u003e This study shows that psychosocial support, such as FTI, should be integrated into the child\\u0026rsquo;s care plan and tailored to each family member\\u0026rsquo;s specific needs. For families to be able to initiate FTI, it is important that HSWs and other healthcare professionals consider when the family is ready to receive support and where the sessions should take place. It is likely that the families might have found initiating and completing FTI easier if the support had been provided at home. Hospital settings need additional resources to promote continuity and to support openness and trust in care relationships, factors that are crucial for families to be able to participate meaningfully in psychosocial support (FTI) and navigate the entire care process when a child in the family has palliative care needs. Relational and interpersonal aspects are central not only to children\\u0026rsquo;s sense of security and willingness to engage, but also to parents\\u0026rsquo; ability to support their child while managing their own emotional responses.\\u003c/p\\u003e\"},{\"header\":\"Abbreviations\",\"content\":\"\\u003cp\\u003eFTI Family Talk Intervention\\u003c/p\\u003e \\u003cp\\u003eHSW Hospital Social Worker\\u003c/p\\u003e \"},{\"header\":\"Declarations\",\"content\":\" \\u003cp\\u003e \\u003cstrong\\u003eEthics approval and consent to participate\\u003c/strong\\u003e \\u003cp\\u003eOral and written information was provided by the HSWs and the researchers. Participants were informed that participation could be discontinued at any time without explanation. Written consent was obtained from all participants before inclusion in the study. Informed consent for children under 15 years was obtained from their guardian(s). Ethical approval was obtained from the Swedish Ethical Review Authority (Dnr 2020\\u0026ndash;06340, 2021\\u0026ndash;02740, 2021\\u0026ndash;04686).\\u003c/p\\u003e \\u003c/p\\u003e \\u003cp\\u003e \\u003cstrong\\u003eConsent for publication\\u003c/strong\\u003e \\u003cp\\u003eNot applicable\\u003c/p\\u003e \\u003c/p\\u003e\\u003cp\\u003e \\u003ch2\\u003eClinical trial number\\u003c/h2\\u003e \\u003cp\\u003eNot applicable\\u003c/p\\u003e \\u003c/p\\u003e\\u003cp\\u003e \\u003ch2\\u003eCompeting interests\\u003c/h2\\u003e \\u003cp\\u003eThe authors declare that they have no conflict of interest.\\u003c/p\\u003e \\u003c/p\\u003e\\u003ch2\\u003eFunding\\u003c/h2\\u003e \\u003cp\\u003e The study was financed by grants from the Swedish Childhood Cancer Fund (TJ2022-0028), the Swedish Research Council (2021\\u0026thinsp;\\u0026minus;\\u0026thinsp;00999), the Swedish Research Council for Health, Working Life and Welfare (2021\\u0026thinsp;\\u0026minus;\\u0026thinsp;00260), and the Swedish state under the agreement between the Swedish government and the county councils, the ALF-agreement (RS2022-0674).\\u003c/p\\u003e\\u003ch2\\u003eAuthor Contribution\\u003c/h2\\u003e\\u003cp\\u003eAll authors contributed to designing and conceptualizing the study. Data collection was conducted by KI and MH. Analyses were undertaken by all authors. The initial drafting of the manuscript was performed by CW. All authors reviewed, revised, and approved the final version of the manuscript.\\u003c/p\\u003e\\u003ch2\\u003eAcknowledgments\\u003c/h2\\u003e \\u003cp\\u003eWe would like to sincerely thank all the families who participated in this study and dedicated their time to being interviewed. We greatly value the insights and experiences that family members have generously shared with us.\\u003c/p\\u003e\\u003ch2\\u003eData Availability\\u003c/h2\\u003e\\u003cp\\u003eTo ensure participant confidentiality, the datasets generated and analyzed during the current study are not publicly accessible, but can be made available from the corresponding author upon reasonable request.\\u003c/p\\u003e\"},{\"header\":\"References\",\"content\":\"\\u003col\\u003e\\u003cli\\u003e\\u003cspan\\u003eHjelmstedt S, Forinder U, Norberg A, Hov\\u0026eacute;n E. 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Parent perspectives on family-based psychosocial interventions in pediatric cancer: a mixed-methods approach. Support Care Cancer. 2014;22(5):1287\\u0026ndash;94.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eCurran GM, Bauer M, Mittman B, Pyne JM, Stetler C. Effectiveness-implementation hybrid designs: combining elements of clinical effectiveness and implementation research to enhance public health impact. Med Care. 2012;50(3):217\\u0026ndash;26.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eBenini F, Papadatou D, Bernad\\u0026aacute; M, Craig F, De Zen L, Downing J, Drake R, Friedrichsdorf S, Garros D, Giacomelli L, et al. International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. J Pain Symptom Manag. 2022;63(5):e529\\u0026ndash;43.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eBraun V, Clarke V. Using thematic analysis in psychology. 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It Is a Whole Different Life from the Life I Used to Live: Assessing Parents' Support Needs in Paediatric Palliative Care. Child (Basel). 2022;9(3).\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003e\\u0026Aring;gren A, Holmberg B. How social workers are positioned and constructed as contributors within national palliative care policies in Sweden: a policy analysis. Palliat Care Soc Pract. 2024;18:26323524241289601.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eHamdan Alshehri H, Olausson S, \\u0026Ouml;hl\\u0026eacute;n J, Wolf A. Factors influencing the integration of a palliative approach in intensive care units: a systematic mixed-methods review. BMC Palliat Care. 2020;19(1):113.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eLjungholm L, Klinga C, Edin-Liljegren A, Ekstedt M. What matters in care continuity on the chronic care trajectory for patients and family carers?-A conceptual model. J Clin Nurs. 2022;31(9\\u0026ndash;10):1327\\u0026ndash;38.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eNikfarid L, Rassouli M, Shirinabadi Farahani A, Beykmirza R, Khoubbin Khoshnazar TA. Perspectives of Afghan refugee mothers on the experience of caring for a child with cancer: a qualitative analysis. East Mediterr Health J. 2020;26(6):680\\u0026ndash;6.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eWebster M. Siblings' caring roles in families with a child with epilepsy. Sociol Health Illn. 2018;40(1):204\\u0026ndash;17.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eOlson LM, Perry GN, Yang S, Galyean PO, Zickmund SL, Sorenson S, Pinto NP, Maddux AB, Watson RS, Fink EL. Parents' Experiences Caring for a Child after a Critical Illness: A Qualitative Study. J Pediatr Intensive Care. 2024;13(2):127\\u0026ndash;33.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eVan Schoors M, De Mol J, Morren H, Verhofstadt LL, Goubert L, Van Parys H. Parents' Perspectives of Changes Within the Family Functioning After a Pediatric Cancer Diagnosis: A Multi Family Member Interview Analysis. Qual Health Res. 2018;28(8):1229\\u0026ndash;41.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eBorrescio-Higa F, Vald\\u0026eacute;s N. The Psychosocial Burden of Families with Childhood Blood Cancer. Int J Environ Res Public Health 2022;19(1).\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eHolm M, Lundberg T, L\\u0026ouml;vgren M, Ljungman L. Parenting a child with cancer and maintaining a healthy couple relationship: Findings from the Family Talk Intervention. Pediatr Blood Cancer. 2024;71(1):e30709.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eRingn\\u0026eacute;r A, Karlsson S, H\\u0026auml;llgren Graneheim U. A person-centred intervention for providing information to parents of children with cancer. Experiences and effects. Eur J Oncol Nurs. 2015;19(3):318\\u0026ndash;24.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eStein A, Dalton L, Rapa E, Bluebond-Langner M, Hanington L, Stein KF, Ziebland S, Rochat T, Harrop E, Kelly B, et al. Communication with children and adolescents about the diagnosis of their own life-threatening condition. Lancet. 2019;393(10176):1150\\u0026ndash;63.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eWeiner C, Pergert P, Castor A, Molewijk B, Bartholdson C. Children's voices on their values and moral dilemmas when being cared and treated for cancer- a qualitative interview study. BMC Med Ethics. 2024;25(1):75.\\u003c/span\\u003e\\u003c/li\\u003e \\u003cli\\u003e\\u003cspan\\u003eWeiner C, Pergert P, Castor A, Molewijk B, Bartholdson C. Sheltering in chaos: parents\\u0026rsquo; experiences when facing moral challenges in childhood cancer care. Ethics Behav 2023;1\\u0026ndash;14.\\u003c/span\\u003e\\u003c/li\\u003e\\u003c/ol\\u003e\"}],\"fulltextSource\":\"\",\"fullText\":\"\",\"funders\":[],\"hasAdminPriorityOnWorkflow\":false,\"hasManuscriptDocX\":true,\"hasOptedInToPreprint\":true,\"hasPassedJournalQc\":\"\",\"hasAnyPriority\":false,\"hideJournal\":false,\"highlight\":\"\",\"institution\":\"\",\"isAcceptedByJournal\":false,\"isAuthorSuppliedPdf\":false,\"isDeskRejected\":\"\",\"isHiddenFromSearch\":false,\"isInQc\":false,\"isInWorkflow\":false,\"isPdf\":false,\"isPdfUpToDate\":true,\"isWithdrawnOrRetracted\":false,\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"bmc-pediatrics\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"bped\",\"sideBox\":\"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)\",\"snPcode\":\"\",\"submissionUrl\":\"https://www.editorialmanager.com/bped/default.aspx\",\"title\":\"BMC Pediatrics\",\"twitterHandle\":\"BMC_series\",\"acdcEnabled\":true,\"dfaEnabled\":false,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC Series\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true},\"keywords\":\"Children, Family members, Family Talk Intervention, Palliative care, Qualitative\",\"lastPublishedDoi\":\"10.21203/rs.3.rs-9115579/v1\",\"lastPublishedDoiUrl\":\"https://doi.org/10.21203/rs.3.rs-9115579/v1\",\"license\":{\"name\":\"CC BY 4.0\",\"url\":\"https://creativecommons.org/licenses/by/4.0/\"},\"manuscriptAbstract\":\"\\u003ch2\\u003eBackground\\u003c/h2\\u003e \\u003cp\\u003eFamilies of children with palliative care needs face significant psychosocial distress. Research has highlighted that open communication within the family promotes psychosocial well-being and reduces stress. Despite the clear need for psychosocial support, few scientifically evaluated family interventions exist, and knowledge about the factors that facilitate or hinder families regarding their initiation and completion of psychosocial support is inadequate.\\u003c/p\\u003e\\u003ch2\\u003eAim\\u003c/h2\\u003e \\u003cp\\u003eTo explore family members\\u0026rsquo; reasons for initiating and completing a psychosocial family intervention, the Family Talk Intervention (FTI), when a child in the family has palliative care needs and is receiving care in a pediatric hospital setting.\\u003c/p\\u003e\\u003ch2\\u003eMethods\\u003c/h2\\u003e \\u003cp\\u003e This study is part of a hybrid effectiveness-implementation study where FTI was provided to families with a child in need of palliative care. It includes interviews with 40 family members (i.e., parents, the ill child, and siblings) conducted after completing FTI. Reflexive thematic analysis was used to generate data.\\u003c/p\\u003e\\u003ch2\\u003eResults\\u003c/h2\\u003e \\u003cp\\u003eThe analysis constructed five themes that describe families\\u0026rsquo; reasons for initiating and completing FTI. Two themes reflected their reasons for initiating FTI: \\u003cem\\u003eThe family members\\u0026rsquo; well-being and life situation\\u003c/em\\u003e and \\u003cem\\u003eThe timing and place of and information about FTI\\u003c/em\\u003e, and three themes reflected their reasons for completing FTI: \\u003cem\\u003eEveryday logistics\\u003c/em\\u003e, \\u003cem\\u003eThe structure and content of FTI\\u003c/em\\u003e, and \\u003cem\\u003eThe HSW\\u0026rsquo;s approach.\\u003c/em\\u003e\\u003c/p\\u003e\\u003ch2\\u003eConclusion\\u003c/h2\\u003e \\u003cp\\u003eLogistical, relational and interpersonal factors are central to the familes\\u0026rsquo; sense of security, which enhances their willingness to engage in psychosocial support, such as FTI. Integrating FTI into the child\\u0026rsquo;s care and tailoring it to each family\\u0026rsquo;s preferences may better address their specific needs.\\u003c/p\\u003e\",\"manuscriptTitle\":\"Family members’ reasons for initiating and completing the Family Talk Intervention when a child has palliative care needs – an interview study\",\"msid\":\"\",\"msnumber\":\"\",\"nonDraftVersions\":[{\"code\":1,\"date\":\"2026-04-14 09:47:18\",\"doi\":\"10.21203/rs.3.rs-9115579/v1\",\"editorialEvents\":[{\"type\":\"communityComments\",\"content\":0},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2026-04-16T21:06:38+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"149533410560255001857476845769071772326\",\"date\":\"2026-04-14T14:10:27+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewersInvited\",\"content\":\"\",\"date\":\"2026-04-07T07:50:11+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorInvited\",\"content\":\"\",\"date\":\"2026-03-16T10:15:17+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorAssigned\",\"content\":\"\",\"date\":\"2026-03-16T06:51:17+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"checksComplete\",\"content\":\"\",\"date\":\"2026-03-16T06:50:55+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"submitted\",\"content\":\"BMC Pediatrics\",\"date\":\"2026-03-13T13:55:03+00:00\",\"index\":\"\",\"fulltext\":\"\"}],\"status\":\"published\",\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"bmc-pediatrics\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"bped\",\"sideBox\":\"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)\",\"snPcode\":\"\",\"submissionUrl\":\"https://www.editorialmanager.com/bped/default.aspx\",\"title\":\"BMC Pediatrics\",\"twitterHandle\":\"BMC_series\",\"acdcEnabled\":true,\"dfaEnabled\":false,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC Series\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true}}],\"origin\":\"\",\"ownerIdentity\":\"bfdca8bf-d53e-4578-ada4-503a65370449\",\"owner\":[],\"postedDate\":\"April 14th, 2026\",\"published\":true,\"recentEditorialEvents\":[],\"rejectedJournal\":[],\"revision\":\"\",\"amendment\":\"\",\"status\":\"under-review\",\"subjectAreas\":[],\"tags\":[],\"updatedAt\":\"2026-04-14T09:47:18+00:00\",\"versionOfRecord\":[],\"versionCreatedAt\":\"2026-04-14 09:47:18\",\"video\":\"\",\"vorDoi\":\"\",\"vorDoiUrl\":\"\",\"workflowStages\":[]},\"version\":\"v1\",\"identity\":\"rs-9115579\",\"journalConfig\":\"researchsquare\"},\"__N_SSP\":true},\"page\":\"/article/[identity]/[[...version]]\",\"query\":{\"redirect\":\"/article/rs-9115579\",\"identity\":\"rs-9115579\",\"version\":[\"v1\"]},\"buildId\":\"XKTyCvWXoU3ODBz1xrDgd\",\"isFallback\":false,\"isExperimentalCompile\":false,\"dynamicIds\":[84888],\"gssp\":true,\"scriptLoader\":[]}","source_license":"CC-BY-4.0","license_restricted":false}