Diversity-On: A diversity-sensitive online self-help program for family caregivers: A protocol for a mixed methods study

Diversity-On: A diversity-sensitive online self-help program for family caregivers: A protocol for a mixed methods 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 Study protocol Diversity-On: A diversity-sensitive online self-help program for family caregivers: A protocol for a mixed methods study Kübra Annac, Mualla Basyigit, Sümeyra Öztürk, Ela Rana Örs, Tugba Aksakal, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3866343/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Scientific research has consistently emphasized the high levels of stress encountered by family caregivers of individuals living with dementia. However, conventional self-help approaches remain underused. The 'Diversity-On' study addresses this issue. Based on a storytelling approach, it develops and evaluates an online self-help program that is participatory and diversity-sensitive, ensuring congruence with diverse identities and lifeworlds. Methods The study uses a mixed-methods design, consisting of eight work packages. These comprise: (WP 1) the establishment of a council of family caregivers (N = 12) and an expert advisory board, (WP 2) secondary data analyses (N = 32), (WP 3) development and implementation of story boards, (WP 4) participant recruitment for the online support groups (N = 156), (WP 5) implementation of the intervention, (WP 6) process evaluation (N = 20), (WP 7) outcome evaluation (quantitative N = 130, qualitative: N = 20) and (WP 8) dissemination and validation of findings. The study's principal feature is its robust participatory strategy, incorporated across the research process and extending to all work packages. The study relies on partnerships with a broad range of stakeholders who unequivocally advocate for patient concerns. Discussion Given its participatory methodology and intersectional perspective, the ‘Diversity-On’ study is expected to yield several significant outcomes. It has the potential to empower family caregivers of individuals living with dementia who are under high stress, empowering them to take part in self-help ventures despite multiple barriers, thus easing their burden. Additionally, it has the capacity to safeguard the well-being of caregiving relatives who are overburdened by excessive demands. The study’s objective is to maintain home care arrangements for an extended period, in line with the values and aspirations of care recipients and their families. The study intends to develop and assess a precisely-customized online self-help resource, suitable for a diverse range of users, to remain accessible even beyond the study's duration. Study protocol mixed methods caring relatives diversity online self-help support group dementia Background Seventy percent of individuals requiring care in Germany are cared for at home, with family members and relatives as the primary caregivers. Only 24.3% opt for outpatient care [ 1 ]. Particularly among individuals of Turkish origin, the percentage of those receiving home-based care is considerably higher at 98% [ 2 ]. Caring for someone can be physically and psychologically demanding for the main family caregiver. 48.7% of those caring for family members experience mental disorders [ 3 ], highlighting the substantial burden and subsequent consequences arising from caregiving responsibilities. Mental illnesses occupy the fourth position among the leading causes of reduced healthy life years in Germany [ 4 ], contributing significantly to the overall disease burden. For these reasons, promoting home care is crucial. For sustained involvement it requires a broad range of resources. To ensure continuity of home care, resources must be available to the primary caregiver, and a properly functioning support network must be established. By enhancing the available resources for family caregivers, individual coping strategies can be improved, leading to a substantial positive impact on health [ 5 ]. To promote and protect health, it is essential to focus on cultivating established coping mechanisms. There is a specific focus on enhancing the self-management skills of family caregivers to actively mitigate the impact of various stressors [ 6 ]. Acknowledging the central role of self-management in preventing chronic diseases, it is apparent that empowering family caregivers is vital [ 7 ]. As family caregivers are more prone to chronic illnesses caused by stress, the implementation of user-oriented preventive measures is essential to prevent diseases due to overwork and burnout. Support services such as traditional self-help formats see limited uptake among specific population groups, including migrants [ 6 ]. Consequently, the highly heterogeneous migrant population is particularly vulnerable in this context, as the proportion of people who are cared for at home is as high as 98% among people of Turkish origin, for example. Qualitative studies conducted in German-speaking countries among the migrant community, focusing on caregivers of individuals living with dementia, reveal that those caregivers choosing not to utilize support services or self-help options can themselves become entangled in the ailment due to prolonged stress [ 8 ]. Research highlights that distancing from their social environment can result in a distressing sense of isolation among family caregivers. Moreover, the fear of being stigmatized due to their caregiving responsibilities can further impede effective coping with both caregiving challenges and daily issues [ 9 ]. The risk of isolation and co-illness could be mitigated through preventive and tailored interventions. These interventions should focus on addressing the caregivers’ unique needs, enhancing their self-management capabilities and empowering them through practical steps. By doing so, caregivers can regain a sense of control and autonomy. Directing one's attention away from stressful emotions, affording chances for relaxation, and engaging with peers in comparable situations, has the potential to alleviate the impact of responsibilities associated with caring for a loved one at home [ 10 ]. Currently, no online self-help platforms effectively cater to the diverse needs of migrants, despite the high prevalence of family caregivers within this population group who experience a high burden [ 11 ]. Participants in a support group show considerable diversity in terms of age, life experiences, relationships with care recipients, religious beliefs, language proficiency, sexual orientation, educational attainment, and the challenges associated with caring responsibilities. This heterogeneity has the potential to decrease the level to which individuals identify with their fellow group members, resulting in sporadic participation or even withdrawal from the group if differences are not appropriately addressed [ 12 ]. Consequently, online self-help communities that are sensitive to this diversity must be established. Such an approach holds the potential to foster a substantial sense of belonging and continuity among participants, thereby maximizing involvement within these groups. Storytelling could be a beneficial approach in self-help groups [ 13 , 14 ]. This narrative approach holds significant potential for advancing health literacy, as well as bolstering self-efficacy expectations and improving self-management skills, particularly for family caregivers [ 15 , 16 ]. The method entails arranging storytelling sessions that cover a wide variety of subjects, with the principal objective of enabling individuals to exchange information, personal encounters, and perceptions [ 16 ]. In a previous study by one of the co-authors of the present paper (YYA), storytelling was implemented for the first time in the context of home care and was directed at Turkish immigrants. Within the study, a self-help-centered storytelling intervention was developed to provide family caregivers with a platform to freely discuss their caregiving circumstances and challenges they faced, while sharing care-related information. The methodology of generating narratives resulted in significant exchange of knowledge, experiences, and insights amongst the family caregivers involved. This highlighted techniques to minimize barriers to accessing support services and to maximize the unused potential for self-help among family caregivers, whilst emphasizing the fundamental importance of engaging the target audience in the design of such services [ 16 ]. As previously stated, family caregivers of patients living with dementia experience significant stress. Traditional self-help formats are infrequently used. The objective of the 'Diversity-On' study is to create an online self-help platform that promotes diversity, encourages participation, and is optimally aligned with diverse characteristics. This self-help platform will facilitate a guided group specifically for caregivers of dementia patients, utilizing the previously mentioned storytelling methodology. The platform will be implemented, for instance, with people having a Turkish migration background. The diversity characteristic specified in advance "Turkish migration background" is intended to serve as an example of a wide range of heterogeneous and diverse people who require individualised and diversity-sensitive support, alongside other diversity characteristics. The online self-help platform is designed to connect family caregivers in Germany who share common diversity characteristics or are in similar care situations, with a focus on enhancing their self-efficacy. By doing so, it aims to alleviate the burden associated with their caregiving circumstances and expand their autonomy within their specific life contexts, ultimately strengthening their self-management abilities. Accordingly, the core research question of the ‘Diversity-On’ study is: To what extent can a participatory and diversity-sensitive online self-help service, based on the storytelling approach, increase the self-efficacy and reduce the burdens of caregiving relatives with a migration background, taking into account intersectional interrelationships between other diversity characteristics? An outcome evaluation will determine the overall impact of the online self-help service on self-efficacy expectations and other related outcomes. As such, the study will examine the following primary and secondary hypotheses: Main (primary) hypothesis: The online self-help service can increase the self-efficacy expectation of family caregivers with Turkish migration background by 2.5 units (assessed with the SWE questionnaire, see Methods section). Secondary hypotheses a-e: The online self-help service can a) increase dementia-related health literacy b) reduce perceived stress c) improve health-related quality of life d) enhance empowerment e) lessen perceived burden of family caregivers with a Turkish migration background. Qualitative hypothesis: The online self-help service is presumed to have high usability. Methods/Design The study uses a mixed-methods design, consisting of 8 work packages (WP): WP 1: Establishment of a council of family caregivers and an advisory board of experts The online self-help program will be guided and facilitated by a council of family caregivers that will actively participate in the study. Comprising 10 to 12 family caregivers, the council will represent a diverse range across gender, class, race, and body [ 17 ]. Recruiting family caregivers for the council will be a joint effort that includes voluntary welfare organizations and other the project partners. The council members will collaborate with the project team in the secondary data analysis (WP 2) and will also oversee the online self-help groups (WP 5). The study benefits from their participation by incorporating individual perspectives in the analysis and contributing to the participatory design of the research [ 18 ]. An additional expert advisory board will be established with nursing scientists, migration researchers, experts for health promotion and prevention, experts for participatory research and experts from the Turkish dementia community. The board will undertake ongoing, biannual monitoring and reflection of each study phase and interim findings. WP 2: Implementation of the secondary data analysis 32 qualitative interviews available from previous projects involving family caregivers of individuals with Turkish heritage afflicted by dementia [ 11 , 19 , 20 ] will be processed as secondary data. The secondary data analysis focuses on identifying thematic areas and relevant diversity characteristics, all of which are important for implementing online support groups that use storytelling. The interviews will be analyzed in collaboration with the council of family caregivers using the qualitative multi-level analytical approach by Winker and Degele [ 17 ]. Within this framework, diversity-specific strains will be scrutinized through an intersectional lens across three dimensions: identities, structural factors, and societal representations. The multi-level analysis consists of 8 steps, from which not only relevant burdens can be determined, but which will also allow to identify which systemic and social challenges family caregivers are exposed to. WP 3: Development and implementation of the storyboards The challenges in providing diverse care that were identified in WP 2 will be developed into stories for the storytelling approach [ 13 ]. These stories will be tailored to the individual diversity characteristics of the participants and will serve as the foundation for the online support groups. Furthermore, the stories will be supplemented with relevant information and support materials that cater specifically to the identified diversity characteristics. WP 4: Participant recruitments for the online self-help groups The intervention expects a total of 130 family caregivers to participate (see below for information on the sample size calculation). Assuming a dropout of about 17%, 156 family caregivers of people living with dementia will be recruited for the self-help groups by means of various cooperation partners, including welfare and self-help organizations and family doctors working in districts with a high proportion of migrants, as well as through social media (e.g. Facebook and Instagram). WP 5: Implementation of the intervention 130 family caregivers will be allocated to 26 online support groups of about 5–6 persons each, comprising both intervention and control groups (as described below). The self-help groups will be led by members of the council of family caregivers. The 26 groups will be randomized into an intervention and a control group, each comprising 13 groups. In the intervention group, online self-help sessions will be delivered using the previously mentioned diversity-sensitive storytelling approach. Participants in the control group will solely attend sessions focused on information. These self-help groups will meet monthly over six months, utilizingan online conference tool. WP 6: Process evaluation Over the six-month period, a process evaluation will be conducted. It will comprise 20 problem-centered interviews following the methodology outlined by Witzel [ 21 ]. These interviews will undergo summative qualitative content analysis [ 22 ]. The process evaluation will be used to examine the intervention's usability as well as to gauge the impact of the stories shared among the groups. The subsequent outcome evaluation will incorporate qualitative and quantitative measures. WP 7: Outcome evaluation The intervention will be evaluated by means of a cluster randomized controlled design, consisting of the aforementioned 2 x 13 online support groups each comprising around 5–6 individuals. The primary outcome of the evaluation is the caregivers' self-efficacy expectation (main hypothesis), assessed by means of the General Self-Efficacy Expectancy scale (‘Skala zur Allgemeinen Selbstwirksamkeitserwartung’) [ 21 ]. Prior research suggests that educational or supportive interventions such as the proposed story-telling self-help intervention may increase family caregivers' self-efficacy by a minimum of 2.5 units on the SWE scale [ 23 , 24 ]. Secondary outcomes (see secondary hypotheses) include health literacy, perceived stress, health-related quality of life, empowerment, and caregiver burden. Health literacy is assessed by means of the HLS-EU-Q questionnaire [ 25 ], a German-language survey tool with 47 items for the assessment of health literacy in various target groups. Caregivers’ perceived stress is assessed using the Perceived Stress Scale (PSS) [ 26 ]. Health-related quality of life is measured using the SF-12 questionnaire [ 27 ]. Empowerment will be assessed through a questionnaire developed in a previous study [ 16 ]. Perceived burden is measured using the home care scale (HPS) [ 26 ]. The questionnaires are available in German, Turkish and English. The appropriate version of the questionnaire is used according to the prioritised language of the respective target person. Given a power of 80%, an alpha error of 5% and a standard deviation of 4 in the primary outcome measure, an estimated intraclass coefficient of 0.15, a sample size of a total of 26 clusters, each consisting of 5–6 caregivers, makes it feasible to identify mean differences of 2.5 on the SWE scale. This constitutes a medium effect size (Cohen's d = 0.6). The primary and secondary hypotheses will be assessed through multivariate testing using structural equation modelling. A qualitative outcome evaluation will be conducted in addition to the quantitative evaluation. For this purpose, 20 problem-centered interviews [ 21 ] will be conducted with participants of the intervention group and analyzed through qualitative content analysis [ 22 ]. Participants will be selected via theoretical sampling, considering aspects that emerge from the online self-help groups. The aforementioned research approach contribute towards an integrated evaluation through an explanatory mixed-methods approach utilizing a 'convergence model' as the triangulation design [ 28 ]. WP 8: Dissemination and validation of findings The objective of this work package is to disseminate the study's results extensively and systematically to scientific, practical, and public audiences. Studyfindings will be communicated to the academic community and stakeholders via a conclusive report and workshop. Additionally, results will be presented at national and international conferences and published in relevant national and international journals. On a practical level, the participatory approach will be crucial in ensuring the sustained dissemination of both process and outcome evaluation findings throughout the study's duration. The dissemination will be reinforced by succinct, single-page information sheets that notify welfare organisations and self-organising migrants. Concurrently, the dissemination of information intended for the public will be enhanced by using multilingual project snippets designed for various social media platforms. Discussion Family caregivers of people living with dementia frequently experience significant stress. Traditional self-help methods have limited effectiveness. 'Diversity-On' develops and evaluates an online self-help platform that is participatory and sensitive to diversity, ensuring the best possible match with various characteristics and lifeworlds. Based on an intersectional qualitative multi-level analysis, care-related, open-ended stories utilizing the storytelling approach will be developed [ 13 ]. These narratives will be complemented by informative and supportive materials that address specific diversity characteristics, leading to the production of ‘storyboards’. At the beginning of self-help meetings, stories will be jointly shared among participants who will then discuss the presented scenarios and brainstorm potential strategies for addressing similar situations. This narrative-driven approach establishes an environment where caregivers can openly discuss obstacles related to care provision. Current self-help programs aimed at family caregivers often overlook diverse characteristics. ‘Diversity-On’ takes an intersectional approach to overcome the challenges encountered by family caregivers and aims to create a supportive program that caters to their distinct lifeworlds and identity characteristics. Self-management skills and the use of preventive measures and health enhancement strategies among caregivers differ based on diverse individual attributes [ 11 , 29 ]. The significance of diverse characteristics becomes apparent especially when they exist simultaneously, which is addressed through intersectional analyses. This approach allows to investigate how multiple diversity attributes can exacerbate inequalities [ 17 ]. There has been limited use of an intersectional perspective in the fields of prevention, health promotion and nursing science. Particularly, the interaction between migration and other diversity attributes has not been adequately studied. It is presumed that the coexistence of multiple attributes, each potentially causing significant psychological stress and related health problems independently, may amplify the effects of stress and the risk of illness. In this context, ‘Diversity-On’ employs a strong participatory approach , which is integral to the entire research process and critical to all work packages. The study entails collaboration with various stakeholders who ardently advocate for patient interests. It employs a participatory research design[ 18 ] that a) involves relevant group members in significant aspects of the research, b) attains fair collaboration between the study staff and co-researchers (in this instance, family members), c) engages and empowers family members as co-researchers throughout the study period and d) explores the assets of the affected communities in a resource-focused way. The online self-help service is developed in partnership with a council of family caregivers, promoting a co-design approach that prioritizes user orientation and resonance with diverse life contexts. These self-help groups are guided by members of the council. Furthermore, council members collaborate with the project team to conduct secondary data analyses. However, there are certain challenges associated with implementing this participatory approach. The recruitment of council members may prove to be difficult and necessitates an accessible and undemanding approach. The research team has established connections within various networks and communities that allow access through gatekeepers, as supported by previous research. Anticipating potential disruptions due to caregiving responsibilities of participants during the participatory analysis of secondary qualitative data, it is necessary to oversample and offer substantial assistance to the family members' council. It is worth noting that some members may lack confidence in scientific work and, consequently, withdraw. It is essential to acknowledge the possibility of schedule setbacks arising from the need to impart fundamental research methodologies to council members. To increase participant identification with the research as a whole, we encourage active participant involvement. We offer an honorarium to reward contributions and encourage engagement, creating a sense of belonging. Additionally, participants act as facilitators during self-help group meetings, highlighting their participation's importance and strengthening their identification with the study. The diverse support group has the potential to effectively relieve the challenges faced by family caregivers. Through exchanging experiences with individuals facing similar difficulties, the group enhances a stronger sense of identification for ongoing engagement. A sense of isolation is replaced by a feeling of belonging. The provision of continuing interactions allows for the potential prevention of mental health issues among family caregivers, as well as the enhancement of skills through information exchange within the group. Gaining self-management abilities is anticipated to reduce stress and illness, addressing both psychological and physical dimensions. This is likely to delay hospitalization and the transfer of care recipients to institutional facilities. Collectively, the expected results of 'Diversity-On' would help highly stressed family caregivers of individuals with dementia to participate in self-help initiatives by overcoming various obstacles, ultimately reducing their burden. Declarations Ethics approval and consent to participate : An ethics application was submitted to the Ethics Committee of the University Witten/Herdecke with application no. S-50/2023. The ethics committee approved the study and ethical and professional concerns were not raised. Consent for publication : n/a as this articles constitutes a study protocol Availability of data and materials : n/a Competing interests: The authors declare that they have no competing interests. Funding : The study ‚Prävention und Gesundheitsförderung für pflegende Angehörige. Entwicklung und Evaluation eines diversitätssensiblen Online-Selbsthilfeangebots zur Stärkung des Selbstmanagements am Beispiel von Menschen mit türkischem Migrationshintergrund‘ (Diversity-On) is funded by the Federal Joint Committee (G-BA) (funding reference 01VSF22048). Authors' contributions: KA developed the initial draft of the manuscript. MB and SÖ were major contributors in writing the manuscript and together with KA are responsible for the project implementation and the processing of the work packages. EÖ, TA, CK and AR read and revised the manuscript. HTG is responsible for project planning and implementation. YYA and PB are responsible for project planning and design and corresponding work packages in the project. All authors read and approved the final manuscript. Acknowledgements: n/a References Statistisches Bundesamt, Pflegestatistik. 2017, Ländervergleich - Pflegebedürftige. 2018. https://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Gesundheit/Pflege/Publikationen/Downloads-Pflege/laender-pflegebeduerftige-5224002179004.pdf?__blob=publicationFile . Okken P-K, Spallek J, Razum O. Pflege türkischer Migranten. In: Bauer U, Büscher A, editors. Soziale Ungleichheit und Pflege: Beiträge sozialwissenschaftlich orientierter Pflegeforschung. 1st ed. Wiesbaden: VS Verlag für Sozialwissenschaften / GWV Fachverlage, Wiesbaden;; 2008. pp. 369–422. Rothgang H, Müller R, Pflegereport. 2018: Schriftenreihe zur Gesundheitsanalyse. 2018. https://www.barmer.de/resource/blob/1028518/9186b971babc3f80267fc329d65f8e5e/barmer-pflegereport-2018-band-12-data.pdf . Rabe-Menssen C, Dazer A, Maaß E, Report Psychotherapie. 2020. 2020. https://www.dptv.de/fileadmin/Redaktion/Bilder_und_Dokumente/Wissensdatenbank_oeffentlich/Report_ Psychotherapie/DPtV_Report_Psychotherapie_2020.pdf . Brügger S, Jaquier A, Sottas B. Belastungserleben und Coping-Strategien pflegender Angehöriger. Perspektive der Angehörigen. [Burdens and coping strategies of informal caregivers. The perspective of informal caregivers]. Z Gerontol Geriatr. 2016;49:138–42. 10.1007/s00391-015-0940-x . Kofahl C, Haack M, Nickel S, Dierks M-L. Wirkungen der gemeinschaftlichen Selbsthilfe. Berlin: LIT; 2019. Steurer-Stey C. Prävention und Gesundheitsförderung für chronisch Kranke. EMH Swiss Medical Publishers; 2009. Piechotta G, Matter C. Die Lebenssituation demenziell erkrankter türkischer Migranten/-innen und ihrer Angehörigen. Z für Gerontopsychologie -psychiatrie. 2008;21:221–30. 10.1024/1011-6877.21.4.221 . Toms GR, Quinn C, Anderson DE, Clare L. Help yourself: perspectives on self-management from people with dementia and their caregivers. Qual Health Res. 2015;25:87–98. 10.1177/1049732314549604 . Veld HIH, Verkaik J, van Meijel R, Verkade B, Werkman P-J, Hertogh W, Francke C. Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia: an online focus group study. BMC Geriatr. 2016;16:95. 10.1186/s12877-016-0268-4 . Tezcan-Güntekin H, Razum O. Pflegende Angehörige türkeistämmiger Menschen mit Demenz - Paradigmenwechsel von Ohnmacht zu Selbstmanagement. Pflege & Gesellschaft. 2018;23. Yılmaz-Aslan Y, Aksakal T, Annaç K, Razum O, Özer-Erdoğdu I, Tezcan-Güntekin H, Brzoska P. Diversität in der Pflege am Beispiel von Menschen mit Migrationshintergrund. In: Bonacker M, Geiger G, editors. Migration in der Pflege. Berlin, Heidelberg: Springer Berlin Heidelberg; 2021. pp. 155–71. 10.1007/978-3-662-61936-0_8 . Greenhalgh T. Cultural contexts of health: The use of narrative research in the health sector. Copenhagen: World Health Organisation Regional Office for Europe; HEN; 2017. Lewis PJ. Storytelling as Research/Research as Storytelling. Qualitative Inq. 2011;17:505–10. 10.1177/1077800411409883 . Holm A-K, Lepp M, Ringsberg KC. Dementia: involving patients in storytelling–a caring intervention. A pilot study. J Clin Nurs. 2005;14:256–63. 10.1111/j.1365-2702.2004.01042.x . Glodny S, Yilmaz-Aslan Y, Razum O. Storytelling als Intervention: Verbesserung der häuslichen Pflege von türkischen Migranten in Deutschland. [Storytelling: an intervention to improve home care of Turkish migrants]. Z Gerontol Geriatr. 2011;44:19–26. 10.1007/s00391-010-0152-3 . Winker G, Degele N. Intersectionality as multi-level analysis: Dealing with social inequality. Eur J Women's Stud. 2011;18:51–66. 10.1177/1350506810386084 . von Unger H. Partizipative Forschung. Wiesbaden: Springer Fachmedien Wiesbaden; 2014. Tezcan-Güntekin H, Yilmaz-Aslan Y, Özer-Erdoğdu I. Abschlussbericht für das Projekt Selbsthilfe Aktiv – (Inter-)Aktive Selbsthilfe für türkeistämmige pflegende Angehörige demenzerkrankter Menschen. 2020. https://www.deutsche-alzheimer.de/fileadmin/Alz/pdf/Forschungsfoerderung/2016_Abschlussbericht_Selbsthilfe_Aktiv_Tezcan_Yilmaz_OEzer.pdf . Accessed 15 Dec 2023. Yilmaz-Aslan Y, Aksakal T, Yilmaz H, Annaç K, Bulic A, Razum O, Tezcan-Güntekin H. Selbstmanagement türkeistämmiger Menschen bei der Pflege von Angehörigen mit Demenz. Eine individualisierte Intervention. In: Hämel K, Röhnsch G, editors. Förderung von Gesundheit und Partizipation bei chronischer Krankheit und Pflegebedürftigkeit im Lebensverlauf. Weinheim: Beltz Juventa in der Verlagsgruppe Beltz; 2021. Witzel A. The Problem-centered Interview. 2000. 10.17169/fqs-1.1.1132 . Mayring P. Qualitative Inhaltsanalyse: Grundlagen und Techniken. Weinheim: Julius Beltz GmbH & Co. KG; 2022. Böttche M, Klasen M, Knaevelsrud C. Ein internetbasiertes Unterstützungsangebot zur Gesundheitsförderung pflegender Angehöriger - Ergebnisse der Pilotstudie. [An internet-based intervention for health promotion in family caregivers–results of a pilot study]. Psychiatr Prax. 2013;40:327–31. 10.1055/s-0033-1349507 . Boyacıoğlu NE, Kutlu Y. The Effectiveness of Psychoeducational Interventions in Reducing the Care Burden of Family Members Caring for the Elderly in Turkey: A Randomized Controlled Study. Arch Psychiatr Nurs. 2017;31:183–9. 10.1016/j.apnu.2016.09.012 . Berens E-M, Vogt D, Messer M, Hurrelmann K, Schaeffer D. Health literacy among different age groups in Germany: results of a cross-sectional survey. BMC Public Health. 2016;16:1151. 10.1186/s12889-016-3810-6 . Cohen S, Kamarck T, Mermelstein R. A Global Measure of Perceived Stress. J Health Soc Behav. 1983;24:385. 10.2307/2136404 . Wirtz MA, Morfeld M, Glaesmer H, Brähler E. Normierung des SF-12 Version 2.0 zur Messung der gesundheitsbezogenen Lebensqualität in einer deutschen bevölkerungsrepräsentativen Stichprobe. Diagnostica. 2018;64:215–26. 10.1026/0012-1924/a000205 . Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. 3rd ed. Los Angeles, Calif. [etc.]: Sage; 2018. Brand T, Kleer D, Samkange-Zeeb F, Zeeb H. Prävention bei Menschen mit Migrationshintergrund: Teilnahme, migrationssensible Strategien und Angebotscharakteristika. [Prevention among migrants: Participation, migrant sensitive strategies and programme characteristics]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2015;58:584–92. 10.1007/s00103-015-2149-y . Additional Declarations No competing interests reported. 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Only 24.3% opt for outpatient care [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Particularly among individuals of Turkish origin, the percentage of those receiving home-based care is considerably higher at 98% [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Caring for someone can be physically and psychologically demanding for the main family caregiver. 48.7% of those caring for family members experience mental disorders [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e], highlighting the substantial burden and subsequent consequences arising from caregiving responsibilities. Mental illnesses occupy the fourth position among the leading causes of reduced healthy life years in Germany [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e], contributing significantly to the overall disease burden.\u003c/p\u003e \u003cp\u003eFor these reasons, promoting home care is crucial. For sustained involvement it requires a broad range of resources. To ensure continuity of home care, resources must be available to the primary caregiver, and a properly functioning support network must be established. By enhancing the available resources for family caregivers, individual coping strategies can be improved, leading to a substantial positive impact on health [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. To promote and protect health, it is essential to focus on cultivating established coping mechanisms. There is a specific focus on enhancing the self-management skills of family caregivers to actively mitigate the impact of various stressors [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Acknowledging the central role of self-management in preventing chronic diseases, it is apparent that empowering family caregivers is vital [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. As family caregivers are more prone to chronic illnesses caused by stress, the implementation of user-oriented preventive measures is essential to prevent diseases due to overwork and burnout.\u003c/p\u003e \u003cp\u003eSupport services such as traditional self-help formats see limited uptake among specific population groups, including migrants [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Consequently, the highly heterogeneous migrant population is particularly vulnerable in this context, as the proportion of people who are cared for at home is as high as 98% among people of Turkish origin, for example. Qualitative studies conducted in German-speaking countries among the migrant community, focusing on caregivers of individuals living with dementia, reveal that those caregivers choosing not to utilize support services or self-help options can themselves become entangled in the ailment due to prolonged stress [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Research highlights that distancing from their social environment can result in a distressing sense of isolation among family caregivers. Moreover, the fear of being stigmatized due to their caregiving responsibilities can further impede effective coping with both caregiving challenges and daily issues [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe risk of isolation and co-illness could be mitigated through preventive and tailored interventions. These interventions should focus on addressing the caregivers\u0026rsquo; unique needs, enhancing their self-management capabilities and empowering them through practical steps. By doing so, caregivers can regain a sense of control and autonomy. Directing one's attention away from stressful emotions, affording chances for relaxation, and engaging with peers in comparable situations, has the potential to alleviate the impact of responsibilities associated with caring for a loved one at home [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eCurrently, no online self-help platforms effectively cater to the diverse needs of migrants, despite the high prevalence of family caregivers within this population group who experience a high burden [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Participants in a support group show considerable diversity in terms of age, life experiences, relationships with care recipients, religious beliefs, language proficiency, sexual orientation, educational attainment, and the challenges associated with caring responsibilities. This heterogeneity has the potential to decrease the level to which individuals identify with their fellow group members, resulting in sporadic participation or even withdrawal from the group if differences are not appropriately addressed [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Consequently, online self-help communities that are sensitive to this diversity must be established. Such an approach holds the potential to foster a substantial sense of belonging and continuity among participants, thereby maximizing involvement within these groups.\u003c/p\u003e \u003cp\u003eStorytelling could be a beneficial approach in self-help groups [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. This narrative approach holds significant potential for advancing health literacy, as well as bolstering self-efficacy expectations and improving self-management skills, particularly for family caregivers [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. The method entails arranging storytelling sessions that cover a wide variety of subjects, with the principal objective of enabling individuals to exchange information, personal encounters, and perceptions [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. In a previous study by one of the co-authors of the present paper (YYA), storytelling was implemented for the first time in the context of home care and was directed at Turkish immigrants. Within the study, a self-help-centered storytelling intervention was developed to provide family caregivers with a platform to freely discuss their caregiving circumstances and challenges they faced, while sharing care-related information. The methodology of generating narratives resulted in significant exchange of knowledge, experiences, and insights amongst the family caregivers involved. This highlighted techniques to minimize barriers to accessing support services and to maximize the unused potential for self-help among family caregivers, whilst emphasizing the fundamental importance of engaging the target audience in the design of such services [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAs previously stated, family caregivers of patients living with dementia experience significant stress. Traditional self-help formats are infrequently used. The objective of the 'Diversity-On' study is to create an online self-help platform that promotes diversity, encourages participation, and is optimally aligned with diverse characteristics. This self-help platform will facilitate a guided group specifically for caregivers of dementia patients, utilizing the previously mentioned storytelling methodology. The platform will be implemented, for instance, with people having a Turkish migration background. The diversity characteristic specified in advance \"Turkish migration background\" is intended to serve as an example of a wide range of heterogeneous and diverse people who require individualised and diversity-sensitive support, alongside other diversity characteristics. The online self-help platform is designed to connect family caregivers in Germany who share common diversity characteristics or are in similar care situations, with a focus on enhancing their self-efficacy. By doing so, it aims to alleviate the burden associated with their caregiving circumstances and expand their autonomy within their specific life contexts, ultimately strengthening their self-management abilities.\u003c/p\u003e \u003cp\u003eAccordingly, the core research question of the \u0026lsquo;Diversity-On\u0026rsquo; study is: To what extent can a participatory and diversity-sensitive online self-help service, based on the storytelling approach, increase the self-efficacy and reduce the burdens of caregiving relatives with a migration background, taking into account intersectional interrelationships between other diversity characteristics?\u003c/p\u003e \u003cp\u003eAn outcome evaluation will determine the overall impact of the online self-help service on self-efficacy expectations and other related outcomes. As such, the study will examine the following primary and secondary hypotheses:\u003c/p\u003e \u003cp\u003eMain (primary) hypothesis: The online self-help service can increase the self-efficacy expectation of family caregivers with Turkish migration background by 2.5 units (assessed with the SWE questionnaire, see \u003cem\u003eMethods\u003c/em\u003e section).\u003c/p\u003e \u003cp\u003eSecondary hypotheses a-e: The online self-help service can\u003c/p\u003e \u003cp\u003ea) increase dementia-related health literacy\u003c/p\u003e\u003cp\u003eb) reduce perceived stress\u003c/p\u003e \u003cp\u003ec) improve health-related quality of life\u003c/p\u003e\u003cp\u003ed) enhance empowerment\u003c/p\u003e \u003cp\u003ee) lessen perceived burden\u003c/p\u003e \u003cp\u003eof family caregivers with a Turkish migration background.\u003c/p\u003e \u003cp\u003eQualitative hypothesis: The online self-help service is presumed to have high usability.\u003c/p\u003e"},{"header":"Methods/Design","content":"\u003cp\u003eThe study uses a mixed-methods design, consisting of 8 work packages (WP):\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eWP 1: Establishment of a council of family caregivers and an advisory board of experts\u003c/h2\u003e \u003cp\u003eThe online self-help program will be guided and facilitated by a council of family caregivers that will actively participate in the study. Comprising 10 to 12 family caregivers, the council will represent a diverse range across gender, class, race, and body [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Recruiting family caregivers for the council will be a joint effort that includes voluntary welfare organizations and other the project partners. The council members will collaborate with the project team in the secondary data analysis (WP 2) and will also oversee the online self-help groups (WP 5). The study benefits from their participation by incorporating individual perspectives in the analysis and contributing to the participatory design of the research [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAn additional expert advisory board will be established with nursing scientists, migration researchers, experts for health promotion and prevention, experts for participatory research and experts from the Turkish dementia community. The board will undertake ongoing, biannual monitoring and reflection of each study phase and interim findings.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eWP 2: Implementation of the secondary data analysis\u003c/h2\u003e \u003cp\u003e32 qualitative interviews available from previous projects involving family caregivers of individuals with Turkish heritage afflicted by dementia [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e] will be processed as secondary data. The secondary data analysis focuses on identifying thematic areas and relevant diversity characteristics, all of which are important for implementing online support groups that use storytelling. The interviews will be analyzed in collaboration with the council of family caregivers using the qualitative multi-level analytical approach by Winker and Degele [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Within this framework, diversity-specific strains will be scrutinized through an intersectional lens across three dimensions: identities, structural factors, and societal representations. The multi-level analysis consists of 8 steps, from which not only relevant burdens can be determined, but which will also allow to identify which systemic and social challenges family caregivers are exposed to.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eWP 3: Development and implementation of the storyboards\u003c/h2\u003e \u003cp\u003eThe challenges in providing diverse care that were identified in WP 2 will be developed into stories for the storytelling approach [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. These stories will be tailored to the individual diversity characteristics of the participants and will serve as the foundation for the online support groups. Furthermore, the stories will be supplemented with relevant information and support materials that cater specifically to the identified diversity characteristics.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eWP 4: Participant recruitments for the online self-help groups\u003c/h2\u003e \u003cp\u003eThe intervention expects a total of 130 family caregivers to participate (see below for information on the sample size calculation). Assuming a dropout of about 17%, 156 family caregivers of people living with dementia will be recruited for the self-help groups by means of various cooperation partners, including welfare and self-help organizations and family doctors working in districts with a high proportion of migrants, as well as through social media (e.g. Facebook and Instagram).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eWP 5: Implementation of the intervention\u003c/h2\u003e \u003cp\u003e130 family caregivers will be allocated to 26 online support groups of about 5\u0026ndash;6 persons each, comprising both intervention and control groups (as described below). The self-help groups will be led by members of the council of family caregivers. The 26 groups will be randomized into an intervention and a control group, each comprising 13 groups. In the intervention group, online self-help sessions will be delivered using the previously mentioned diversity-sensitive storytelling approach. Participants in the control group will solely attend sessions focused on information. These self-help groups will meet monthly over six months, utilizingan online conference tool.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eWP 6: Process evaluation\u003c/h2\u003e \u003cp\u003eOver the six-month period, a process evaluation will be conducted. It will comprise 20 problem-centered interviews following the methodology outlined by Witzel [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. These interviews will undergo summative qualitative content analysis [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. The process evaluation will be used to examine the intervention's usability as well as to gauge the impact of the stories shared among the groups. The subsequent outcome evaluation will incorporate qualitative and quantitative measures.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eWP 7: Outcome evaluation\u003c/h2\u003e \u003cp\u003eThe intervention will be evaluated by means of a cluster randomized controlled design, consisting of the aforementioned 2 x 13 online support groups each comprising around 5\u0026ndash;6 individuals.\u003c/p\u003e \u003cp\u003eThe primary outcome of the evaluation is the caregivers' self-efficacy expectation (main hypothesis), assessed by means of the General Self-Efficacy Expectancy scale (\u0026lsquo;Skala zur Allgemeinen Selbstwirksamkeitserwartung\u0026rsquo;) [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Prior research suggests that educational or supportive interventions such as the proposed story-telling self-help intervention may increase family caregivers' self-efficacy by a minimum of 2.5 units on the SWE scale [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eSecondary outcomes (see secondary hypotheses) include health literacy, perceived stress, health-related quality of life, empowerment, and caregiver burden. Health literacy is assessed by means of the HLS-EU-Q questionnaire [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e], a German-language survey tool with 47 items for the assessment of health literacy in various target groups. Caregivers\u0026rsquo; perceived stress is assessed using the Perceived Stress Scale (PSS) [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Health-related quality of life is measured using the SF-12 questionnaire [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Empowerment will be assessed through a questionnaire developed in a previous study [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Perceived burden is measured using the home care scale (HPS) [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. The questionnaires are available in German, Turkish and English. The appropriate version of the questionnaire is used according to the prioritised language of the respective target person.\u003c/p\u003e \u003cp\u003eGiven a power of 80%, an alpha error of 5% and a standard deviation of 4 in the primary outcome measure, an estimated intraclass coefficient of 0.15, a sample size of a total of 26 clusters, each consisting of 5\u0026ndash;6 caregivers, makes it feasible to identify mean differences of 2.5 on the SWE scale. This constitutes a medium effect size (Cohen's d\u0026thinsp;=\u0026thinsp;0.6). The primary and secondary hypotheses will be assessed through multivariate testing using structural equation modelling.\u003c/p\u003e \u003cp\u003eA qualitative outcome evaluation will be conducted in addition to the quantitative evaluation. For this purpose, 20 problem-centered interviews [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e] will be conducted with participants of the intervention group and analyzed through qualitative content analysis [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Participants will be selected via theoretical sampling, considering aspects that emerge from the online self-help groups.\u003c/p\u003e \u003cp\u003eThe aforementioned research approach contribute towards an integrated evaluation through an explanatory mixed-methods approach utilizing a 'convergence model' as the triangulation design [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eWP 8: Dissemination and validation of findings\u003c/h2\u003e \u003cp\u003eThe objective of this work package is to disseminate the study's results extensively and systematically to scientific, practical, and public audiences. Studyfindings will be communicated to the academic community and stakeholders via a conclusive report and workshop. Additionally, results will be presented at national and international conferences and published in relevant national and international journals.\u003c/p\u003e \u003cp\u003eOn a practical level, the participatory approach will be crucial in ensuring the sustained dissemination of both process and outcome evaluation findings throughout the study's duration. The dissemination will be reinforced by succinct, single-page information sheets that notify welfare organisations and self-organising migrants. Concurrently, the dissemination of information intended for the public will be enhanced by using multilingual project snippets designed for various social media platforms.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eFamily caregivers of people living with dementia frequently experience significant stress. Traditional self-help methods have limited effectiveness. 'Diversity-On' develops and evaluates an online self-help platform that is participatory and sensitive to diversity, ensuring the best possible match with various characteristics and lifeworlds.\u003c/p\u003e \u003cp\u003eBased on an intersectional qualitative multi-level analysis, care-related, open-ended stories utilizing the \u003cem\u003estorytelling\u003c/em\u003e approach will be developed [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. These narratives will be complemented by informative and supportive materials that address specific diversity characteristics, leading to the production of \u0026lsquo;storyboards\u0026rsquo;. At the beginning of self-help meetings, stories will be jointly shared among participants who will then discuss the presented scenarios and brainstorm potential strategies for addressing similar situations. This narrative-driven approach establishes an environment where caregivers can openly discuss obstacles related to care provision.\u003c/p\u003e \u003cp\u003eCurrent self-help programs aimed at family caregivers often overlook diverse characteristics. \u0026lsquo;Diversity-On\u0026rsquo; takes an \u003cem\u003eintersectional\u003c/em\u003e approach to overcome the challenges encountered by family caregivers and aims to create a supportive program that caters to their distinct lifeworlds and identity characteristics. Self-management skills and the use of preventive measures and health enhancement strategies among caregivers differ based on diverse individual attributes [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. The significance of diverse characteristics becomes apparent especially when they exist simultaneously, which is addressed through intersectional analyses. This approach allows to investigate how multiple diversity attributes can exacerbate inequalities [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. There has been limited use of an intersectional perspective in the fields of prevention, health promotion and nursing science. Particularly, the interaction between migration and other diversity attributes has not been adequately studied. It is presumed that the coexistence of multiple attributes, each potentially causing significant psychological stress and related health problems independently, may amplify the effects of stress and the risk of illness.\u003c/p\u003e \u003cp\u003eIn this context, \u0026lsquo;Diversity-On\u0026rsquo; employs a strong \u003cem\u003eparticipatory approach\u003c/em\u003e, which is integral to the entire research process and critical to all work packages. The study entails collaboration with various stakeholders who ardently advocate for patient interests. It employs a participatory research design[\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] that a) involves relevant group members in significant aspects of the research, b) attains fair collaboration between the study staff and co-researchers (in this instance, family members), c) engages and empowers family members as co-researchers throughout the study period and d) explores the assets of the affected communities in a resource-focused way. The online self-help service is developed in partnership with a council of family caregivers, promoting a co-design approach that prioritizes user orientation and resonance with diverse life contexts. These self-help groups are guided by members of the council. Furthermore, council members collaborate with the project team to conduct secondary data analyses.\u003c/p\u003e \u003cp\u003eHowever, there are certain challenges associated with implementing this participatory approach. The recruitment of council members may prove to be difficult and necessitates an accessible and undemanding approach. The research team has established connections within various networks and communities that allow access through gatekeepers, as supported by previous research. Anticipating potential disruptions due to caregiving responsibilities of participants during the participatory analysis of secondary qualitative data, it is necessary to oversample and offer substantial assistance to the family members' council. It is worth noting that some members may lack confidence in scientific work and, consequently, withdraw. It is essential to acknowledge the possibility of schedule setbacks arising from the need to impart fundamental research methodologies to council members. To increase participant identification with the research as a whole, we encourage active participant involvement. We offer an honorarium to reward contributions and encourage engagement, creating a sense of belonging. Additionally, participants act as facilitators during self-help group meetings, highlighting their participation's importance and strengthening their identification with the study.\u003c/p\u003e \u003cp\u003eThe diverse support group has the potential to effectively relieve the challenges faced by family caregivers. Through exchanging experiences with individuals facing similar difficulties, the group enhances a stronger sense of identification for ongoing engagement. A sense of isolation is replaced by a feeling of belonging. The provision of continuing interactions allows for the potential prevention of mental health issues among family caregivers, as well as the enhancement of skills through information exchange within the group. Gaining self-management abilities is anticipated to reduce stress and illness, addressing both psychological and physical dimensions. This is likely to delay hospitalization and the transfer of care recipients to institutional facilities. Collectively, the expected results of 'Diversity-On' would help highly stressed family caregivers of individuals with dementia to participate in self-help initiatives by overcoming various obstacles, ultimately reducing their burden.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e: An ethics application was submitted to the Ethics Committee of the University Witten/Herdecke with application no. S-50/2023. The ethics committee approved the study and ethical and professional concerns were not raised.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e: n/a as this articles constitutes a study protocol\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e: n/a\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests:\u003c/em\u003e The authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e: The study \u0026sbquo;Pr\u0026auml;vention und Gesundheitsf\u0026ouml;rderung f\u0026uuml;r pflegende Angeh\u0026ouml;rige. Entwicklung und Evaluation eines diversit\u0026auml;tssensiblen Online-Selbsthilfeangebots zur St\u0026auml;rkung des Selbstmanagements am Beispiel von Menschen mit t\u0026uuml;rkischem Migrationshintergrund\u0026lsquo; (Diversity-On) is funded by the Federal Joint Committee (G-BA) (funding reference 01VSF22048).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAuthors\u0026apos; contributions:\u0026nbsp;\u003c/em\u003eKA developed the initial draft of the manuscript. MB and S\u0026Ouml; were major contributors in writing the manuscript and together with KA are responsible for the project implementation and the processing of the work packages. E\u0026Ouml;, TA, CK and AR read and revised the manuscript. HTG is responsible for project planning and implementation. YYA and PB are responsible for project planning and design and corresponding work packages in the project. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcknowledgements:\u003c/em\u003e n/a\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eStatistisches Bundesamt, Pflegestatistik. 2017, L\u0026auml;ndervergleich - Pflegebed\u0026uuml;rftige. 2018. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Gesundheit/Pflege/Publikationen/Downloads-Pflege/laender-pflegebeduerftige-5224002179004.pdf?__blob=publicationFile\u003c/span\u003e\u003cspan address=\"https://www.destatis.de/DE/Themen/Gesellschaft-Umwelt/Gesundheit/Pflege/Publikationen/Downloads-Pflege/laender-pflegebeduerftige-5224002179004.pdf?__blob=publicationFile\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOkken P-K, Spallek J, Razum O. Pflege t\u0026uuml;rkischer Migranten. In: Bauer U, B\u0026uuml;scher A, editors. Soziale Ungleichheit und Pflege: Beitr\u0026auml;ge sozialwissenschaftlich orientierter Pflegeforschung. 1st ed. Wiesbaden: VS Verlag f\u0026uuml;r Sozialwissenschaften / GWV Fachverlage, Wiesbaden;; 2008. pp. 369\u0026ndash;422.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRothgang H, M\u0026uuml;ller R, Pflegereport. 2018: Schriftenreihe zur Gesundheitsanalyse. 2018. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.barmer.de/resource/blob/1028518/9186b971babc3f80267fc329d65f8e5e/barmer-pflegereport-2018-band-12-data.pdf\u003c/span\u003e\u003cspan address=\"https://www.barmer.de/resource/blob/1028518/9186b971babc3f80267fc329d65f8e5e/barmer-pflegereport-2018-band-12-data.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRabe-Menssen C, Dazer A, Maa\u0026szlig; E, Report Psychotherapie. 2020. 2020. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.dptv.de/fileadmin/Redaktion/Bilder_und_Dokumente/Wissensdatenbank_oeffentlich/Report_\u003cbr\u003ePsychotherapie/DPtV_Report_Psychotherapie_2020.pdf\u003c/span\u003e\u003cspan address=\"https://www.dptv.de/fileadmin/Redaktion/Bilder_und_Dokumente/Wissensdatenbank_oeffentlich/Report_Psychotherapie/DPtV_Report_Psychotherapie_2020.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBr\u0026uuml;gger S, Jaquier A, Sottas B. Belastungserleben und Coping-Strategien pflegender Angeh\u0026ouml;riger. Perspektive der Angeh\u0026ouml;rigen. [Burdens and coping strategies of informal caregivers. The perspective of informal caregivers]. Z Gerontol Geriatr. 2016;49:138\u0026ndash;42. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s00391-015-0940-x\u003c/span\u003e\u003cspan address=\"10.1007/s00391-015-0940-x\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKofahl C, Haack M, Nickel S, Dierks M-L. Wirkungen der gemeinschaftlichen Selbsthilfe. Berlin: LIT; 2019.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSteurer-Stey C. Pr\u0026auml;vention und Gesundheitsf\u0026ouml;rderung f\u0026uuml;r chronisch Kranke. EMH Swiss Medical Publishers; 2009.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePiechotta G, Matter C. Die Lebenssituation demenziell erkrankter t\u0026uuml;rkischer Migranten/-innen und ihrer Angeh\u0026ouml;rigen. Z f\u0026uuml;r Gerontopsychologie -psychiatrie. 2008;21:221\u0026ndash;30. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1024/1011-6877.21.4.221\u003c/span\u003e\u003cspan address=\"10.1024/1011-6877.21.4.221\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eToms GR, Quinn C, Anderson DE, Clare L. Help yourself: perspectives on self-management from people with dementia and their caregivers. Qual Health Res. 2015;25:87\u0026ndash;98. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1049732314549604\u003c/span\u003e\u003cspan address=\"10.1177/1049732314549604\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVeld HIH, Verkaik J, van Meijel R, Verkade B, Werkman P-J, Hertogh W, Francke C. Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia: an online focus group study. BMC Geriatr. 2016;16:95. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s12877-016-0268-4\u003c/span\u003e\u003cspan address=\"10.1186/s12877-016-0268-4\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTezcan-G\u0026uuml;ntekin H, Razum O. Pflegende Angeh\u0026ouml;rige t\u0026uuml;rkeist\u0026auml;mmiger Menschen mit Demenz - Paradigmenwechsel von Ohnmacht zu Selbstmanagement. Pflege \u0026amp; Gesellschaft. 2018;23.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYılmaz-Aslan Y, Aksakal T, Anna\u0026ccedil; K, Razum O, \u0026Ouml;zer-Erdoğdu I, Tezcan-G\u0026uuml;ntekin H, Brzoska P. Diversit\u0026auml;t in der Pflege am Beispiel von Menschen mit Migrationshintergrund. In: Bonacker M, Geiger G, editors. Migration in der Pflege. Berlin, Heidelberg: Springer Berlin Heidelberg; 2021. pp. 155\u0026ndash;71. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/978-3-662-61936-0_8\u003c/span\u003e\u003cspan address=\"10.1007/978-3-662-61936-0_8\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGreenhalgh T. Cultural contexts of health: The use of narrative research in the health sector. Copenhagen: World Health Organisation Regional Office for Europe; HEN; 2017.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLewis PJ. Storytelling as Research/Research as Storytelling. Qualitative Inq. 2011;17:505\u0026ndash;10. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1077800411409883\u003c/span\u003e\u003cspan address=\"10.1177/1077800411409883\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHolm A-K, Lepp M, Ringsberg KC. Dementia: involving patients in storytelling\u0026ndash;a caring intervention. A pilot study. J Clin Nurs. 2005;14:256\u0026ndash;63. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/j.1365-2702.2004.01042.x\u003c/span\u003e\u003cspan address=\"10.1111/j.1365-2702.2004.01042.x\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGlodny S, Yilmaz-Aslan Y, Razum O. Storytelling als Intervention: Verbesserung der h\u0026auml;uslichen Pflege von t\u0026uuml;rkischen Migranten in Deutschland. [Storytelling: an intervention to improve home care of Turkish migrants]. Z Gerontol Geriatr. 2011;44:19\u0026ndash;26. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s00391-010-0152-3\u003c/span\u003e\u003cspan address=\"10.1007/s00391-010-0152-3\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWinker G, Degele N. Intersectionality as multi-level analysis: Dealing with social inequality. Eur J Women's Stud. 2011;18:51\u0026ndash;66. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1350506810386084\u003c/span\u003e\u003cspan address=\"10.1177/1350506810386084\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003evon Unger H. Partizipative Forschung. Wiesbaden: Springer Fachmedien Wiesbaden; 2014.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTezcan-G\u0026uuml;ntekin H, Yilmaz-Aslan Y, \u0026Ouml;zer-Erdoğdu I. Abschlussbericht f\u0026uuml;r das Projekt Selbsthilfe Aktiv \u0026ndash; (Inter-)Aktive Selbsthilfe f\u0026uuml;r t\u0026uuml;rkeist\u0026auml;mmige pflegende Angeh\u0026ouml;rige demenzerkrankter Menschen. 2020. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.deutsche-alzheimer.de/fileadmin/Alz/pdf/Forschungsfoerderung/2016_Abschlussbericht_Selbsthilfe_Aktiv_Tezcan_Yilmaz_OEzer.pdf\u003c/span\u003e\u003cspan address=\"https://www.deutsche-alzheimer.de/fileadmin/Alz/pdf/Forschungsfoerderung/2016_Abschlussbericht_Selbsthilfe_Aktiv_Tezcan_Yilmaz_OEzer.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. Accessed 15 Dec 2023.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYilmaz-Aslan Y, Aksakal T, Yilmaz H, Anna\u0026ccedil; K, Bulic A, Razum O, Tezcan-G\u0026uuml;ntekin H. Selbstmanagement t\u0026uuml;rkeist\u0026auml;mmiger Menschen bei der Pflege von Angeh\u0026ouml;rigen mit Demenz. Eine individualisierte Intervention. In: H\u0026auml;mel K, R\u0026ouml;hnsch G, editors. F\u0026ouml;rderung von Gesundheit und Partizipation bei chronischer Krankheit und Pflegebed\u0026uuml;rftigkeit im Lebensverlauf. Weinheim: Beltz Juventa in der Verlagsgruppe Beltz; 2021.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWitzel A. The Problem-centered Interview. 2000. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.17169/fqs-1.1.1132\u003c/span\u003e\u003cspan address=\"10.17169/fqs-1.1.1132\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMayring P. Qualitative Inhaltsanalyse: Grundlagen und Techniken. Weinheim: Julius Beltz GmbH \u0026amp; Co. KG; 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eB\u0026ouml;ttche M, Klasen M, Knaevelsrud C. Ein internetbasiertes Unterst\u0026uuml;tzungsangebot zur Gesundheitsf\u0026ouml;rderung pflegender Angeh\u0026ouml;riger - Ergebnisse der Pilotstudie. [An internet-based intervention for health promotion in family caregivers\u0026ndash;results of a pilot study]. Psychiatr Prax. 2013;40:327\u0026ndash;31. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1055/s-0033-1349507\u003c/span\u003e\u003cspan address=\"10.1055/s-0033-1349507\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBoyacıoğlu NE, Kutlu Y. The Effectiveness of Psychoeducational Interventions in Reducing the Care Burden of Family Members Caring for the Elderly in Turkey: A Randomized Controlled Study. Arch Psychiatr Nurs. 2017;31:183\u0026ndash;9. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.apnu.2016.09.012\u003c/span\u003e\u003cspan address=\"10.1016/j.apnu.2016.09.012\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBerens E-M, Vogt D, Messer M, Hurrelmann K, Schaeffer D. Health literacy among different age groups in Germany: results of a cross-sectional survey. BMC Public Health. 2016;16:1151. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s12889-016-3810-6\u003c/span\u003e\u003cspan address=\"10.1186/s12889-016-3810-6\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCohen S, Kamarck T, Mermelstein R. A Global Measure of Perceived Stress. J Health Soc Behav. 1983;24:385. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.2307/2136404\u003c/span\u003e\u003cspan address=\"10.2307/2136404\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWirtz MA, Morfeld M, Glaesmer H, Br\u0026auml;hler E. Normierung des SF-12 Version 2.0 zur Messung der gesundheitsbezogenen Lebensqualit\u0026auml;t in einer deutschen bev\u0026ouml;lkerungsrepr\u0026auml;sentativen Stichprobe. Diagnostica. 2018;64:215\u0026ndash;26. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1026/0012-1924/a000205\u003c/span\u003e\u003cspan address=\"10.1026/0012-1924/a000205\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCreswell JW, Plano Clark VL. Designing and conducting mixed methods research. 3rd ed. Los Angeles, Calif. [etc.]: Sage; 2018.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBrand T, Kleer D, Samkange-Zeeb F, Zeeb H. Pr\u0026auml;vention bei Menschen mit Migrationshintergrund: Teilnahme, migrationssensible Strategien und Angebotscharakteristika. [Prevention among migrants: Participation, migrant sensitive strategies and programme characteristics]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2015;58:584\u0026ndash;92. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s00103-015-2149-y\u003c/span\u003e\u003cspan address=\"10.1007/s00103-015-2149-y\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Study protocol, mixed methods, caring relatives, diversity, online, self-help, support group, dementia","lastPublishedDoi":"10.21203/rs.3.rs-3866343/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3866343/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eScientific research has consistently emphasized the high levels of stress encountered by family caregivers of individuals living with dementia. However, conventional self-help approaches remain underused. The 'Diversity-On' study addresses this issue. Based on a storytelling approach, it develops and evaluates an online self-help program that is participatory and diversity-sensitive, ensuring congruence with diverse identities and lifeworlds.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eThe study uses a mixed-methods design, consisting of eight work packages. These comprise: (WP 1) the establishment of a council of family caregivers (N\u0026thinsp;=\u0026thinsp;12) and an expert advisory board, (WP 2) secondary data analyses (N\u0026thinsp;=\u0026thinsp;32), (WP 3) development and implementation of story boards, (WP 4) participant recruitment for the online support groups (N\u0026thinsp;=\u0026thinsp;156), (WP 5) implementation of the intervention, (WP 6) process evaluation (N\u0026thinsp;=\u0026thinsp;20), (WP 7) outcome evaluation (quantitative N\u0026thinsp;=\u0026thinsp;130, qualitative: N\u0026thinsp;=\u0026thinsp;20) and (WP 8) dissemination and validation of findings. The study's principal feature is its robust participatory strategy, incorporated across the research process and extending to all work packages. The study relies on partnerships with a broad range of stakeholders who unequivocally advocate for patient concerns.\u003c/p\u003e\u003ch2\u003eDiscussion\u003c/h2\u003e \u003cp\u003eGiven its participatory methodology and intersectional perspective, the \u0026lsquo;Diversity-On\u0026rsquo; study is expected to yield several significant outcomes. It has the potential to empower family caregivers of individuals living with dementia who are under high stress, empowering them to take part in self-help ventures despite multiple barriers, thus easing their burden. Additionally, it has the capacity to safeguard the well-being of caregiving relatives who are overburdened by excessive demands. The study\u0026rsquo;s objective is to maintain home care arrangements for an extended period, in line with the values and aspirations of care recipients and their families. The study intends to develop and assess a precisely-customized online self-help resource, suitable for a diverse range of users, to remain accessible even beyond the study's duration.\u003c/p\u003e","manuscriptTitle":"Diversity-On: A diversity-sensitive online self-help program for family caregivers: A protocol for a mixed methods study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-01-18 13:34:28","doi":"10.21203/rs.3.rs-3866343/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"2b5e3972-e3cf-4414-99f0-55637d7336e7","owner":[],"postedDate":"January 18th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-03-14T11:12:16+00:00","versionOfRecord":[],"versionCreatedAt":"2024-01-18 13:34:28","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-3866343","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3866343","identity":"rs-3866343","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}