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Open research questions in Family Support in Illness

41 unresolved questions extracted from the limitations and future-work sections of 1,017 Family Support in Illness papers in our library. Each links back to the study that raised it.

What the literature leaves open

  • This also led to missing data about caregiver self-reported involvement, thus results about caregiver involvement may not be representative of the full sample and should be interpreted with caution. Findings may not be representative of a sample of children with consistent medical diagnoses of autism.

    Facing Your Fears in Schools (FYF-S): Connecting Participant Satisfaction, Caregiver Involvement, and Anxiety Outcomes · 2026 · DOI

  • Additional work is needed to replicate and expand these initial findings about participant satisfaction with FYF-S. Future studies should include a larger, more diverse sam- ple to increase the generalizability of findings and enable exploration of child and caregiver characteristics (e.g., gender, ethnicity, child age) and implementation variables (e.g., session attendance, exposure completion, provider discipline) that may impact satisfaction, caregiver involve- ment, and outcomes. Future studies may wish to employ a more robust, validated measure of participant satisfaction in addition to individualized, program-specific items like those in the present study (Olsson et al., 2021). Adding a mea- sure of caregiver motivation to participate at baseline would allow exploration of its potentially confounding effects on perceived anxiety outcomes and intervention satisfaction. Measuring satisfaction for individual program components over time via formative assessment would be valuable in determining directionality of the relationships between sat- isfaction and anxiety outcomes and identifying program ele- ments that are salient to satisfaction. Given the low levels of caregiver involvement in this sample, future research should explore specific barriers to caregiver involvement in FYF-S and potential mechanisms for reducing these barriers (e.g., accessibility of materials, fostering collaborative caregiver- school relationships), and whether this improves outcomes. Previous research suggests that caregiver stress is an impor- tant contributor to caregiver involvement in and satisfaction with interventions for autistic youth (Ferguson et al., 2022), thus future research should also explore the role of caregiver stress in FYF-S involvement and satisfaction. Acknowledgments The authors thank the administrators from the par- ticipating school districts as well as the many school providers, stu- dents and caregivers who participated in this study. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the Health Resources and Services Administration (HRSA; R41 MC31075-01-00). J.R. was supported, in part, by the HRSA under the Leadership Education in Neurodevelop- mental Disabilities (LEND; T73MC11044) and by the Administration on Intellectual and Developmental Disabilities (AIDD) under the Uni- versity Center of Excellence in Developmental Disabilities (UCEDD; 90DD0632) of the US Department of Health and Human Services (HHS). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the US Government. Data Availability The raw data supporting the conclusions of this arti- cle will be made available by the authors at request, without undue reservation.

    Facing Your Fears in Schools (FYF-S): Connecting Participant Satisfaction, Caregiver Involvement, and Anxiety Outcomes · 2026 · DOI

  • 6.1 Reducing Financial Stress A. RHD National Fund: Create financial sources to assist with medications, prophylactic antibiotics, dietary supplements, and travel costs for children with RHD. B. Caregiver Economic Support: Provide vocational training or micro-grants to lessen the financial burden of caring for someone with RHD. 6.2 Increasing Healthcare Capacity A. Primary Care Screening: Add inexpensive echocardiogram/clinical scoring at primary health facilities for early diagnosis and prevention of disease progression. 43 EdinBurg Peer-Reviewed Journals and Books Publishers Journal of Medicine, Nursing and Public Health Vol. 6||Issue 6||pp 32-45||June||2026 Email: [email protected]||ISSN: 3105-3394 B. Postoperative and Transition Care: Develop structured discharge plans, make immediate access to medications available, and schedule follow-up visits to reduce patient abandonment. 6.3 Providing Psychological/Social Support A. Clinic-based Psycho Social Services: Provide counseling to caregivers and families at the time of diagnosis and throughout their ongoing care to help them cope with their trauma and chronic stress. B. Peer Support Networks: Create parent/caregiver support groups to reduce feelings of isolation, to offer practical information, and to reconnect families to the community. 6.4 Use Improving Patient Education and Guidelines A. Standardized RHD Resource for Patients: Produce educational resources to help explain the different phases of treatment and identify milestones, so that patients will have less anxiety when they receive treatment and learn what to expect along the way. B. Employment and School Education Resources: Provide educational resources to employers, educators, and other professionals to create understanding and supportive environments for children living with RHD.

    Experiences and Needs of School Children with Rheumatic Heart Disease and Their Caregivers at Kenyatta National Hospital, Nairobi City County, Kenya · 2026 · DOI

  • The study offers several recommendations for different stakeholders. Eldest siblings are encouraged to practice self-care, seek support when needed, and openly express their emotions about their responsibilities within the family. Parents, on the other hand, should carefully assess the responsibilities their children undertake at home and recognize and appreciate the efforts of eldest siblings in fulfilling these duties. Guidance counselors and mental health care professionals are advised to conduct workshops or seminars on coping strategies, emotional regulation, and communication skills, while also encouraging students, especially eldest siblings to prioritize self-care. The community is likewise encouraged to provide resources and establish support systems for eldest siblings and their families. Lastly, future researchers are recommended to explore more diverse populations and examine other factors that may influence the experiences of eldest siblings, as well as to conduct qualitative or mixed-method studies to gain deeper insights into their emotional experiences.

    The Role of Ate and Kuya: Eldest Siblings' Responsibilities and Emotional Experiences among Mindanao State University-Sulu Senior High School Students · 2026 · DOI

  • While the in-person JoH model has been extensively delivered and studied, the virtual implementation of this intervention, specifically tailored for the unique needs of children and youth during the COVID-19 pandemic, has not been previously explored.

    The Dynamic Adaptation of the Journey of Hope: A School-Based Intervention to Support Pandemic and Disaster–Affected Children and Youth · 2024 · DOI

  • To date, limited research has been undertaken regarding the interplay between differentiation of self (DoS), parental involvement, and the prevalence of psychological symptoms in emerging adults (EA) aged between 18 and 25 years in Australia.

    Differentiation of Self and Mental Health Symptoms in Emerging Adulthood in Australia: The Role of Parenting Behaviours · 2021 · DOI

  • PROBLEM: Little is known about the relationships among life change events, hope, and self-care agency in inner-city adolescents METHODS: Adolescents (N = 202) attending two inner-city high schools in Miami (M = 15.

    Life Change Events, Hope, and Self-care Agency in Inner-City Adolescents · 2001 · DOI

  • Support groups have the potential to mitigate some of the developmental and condition-specific psychological and social issues common to sickle cell disease (SCD), yet little is known about how adolescents with SCD view and use these groups.

    Adolescents with Sickle Cell Disease: Determinants of Support Group Attendance and Satisfaction · 2000 · DOI

  • Although nurses are often the first to recognise distress and provide support, their role in promoting adolescent mental health is often under-researched.

    The role of nursing in maintaining adolescent mental well-being · 2026 · DOI

  • The authors would suggest further research on early identification during exam season of CYPs requiring additional support regarding emotional well-being and suicidal ideation.

    Applying positive behaviour support with adolescents: a trauma-informed hospital discharge model · 2026 · DOI

  • However, additional work is needed to understand the high levels of patient empowerment observed in youth with the most unsupportive caregivers and to explore how healthcare providers/systems can better support youth with somewhat unsupportive parents, who experience the lowest empowerment.

    The Impact of Parent Support on Patient Empowerment in Trans and Gender Diverse Youth · 2023 · DOI

  • Adolescents in Thailand’s Deep South are growing up amid protracted instability, yet limited research has left a critical gap in understanding their strengths, stressors, and unmet support needs.

    Exploring the Daily Lives and Well-Being of Orphaned Adolescents Affected by the Armed Conflict in Thailand’s Deep South · 2021 · DOI

  • Research into post‐separation fathers’ and mothers’ experiences of loss and grief in relation to their children is sparse and largely consists of small‐scale qualitative studies focusing either on fathers or mothers.

    A Therapist’s Mandate?: Integrating an Ethics of Care into Custody Law by Recognising and Responding to Post‐separation Parental Loss of Connection with Children · 2019 · DOI

  • Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life.

    Supporting children and young people to assume responsibility from their parents for the self‐management of their long‐term condition: An integrative review · 2019 · DOI

  • A substantial body of research documents the impact of informal care on adult caregivers’ wellbeing, but little is known of the experiences of young carers who attend postsecondary schools in Canada.

    Communal Orientation, Benefit-finding, and Coping among Young Carers · 2019 · DOI

  • Limited research describes the family as offering a source of positive support for some Filipino youths and yet for some it is also a source of stress and isolation, leading to struggles with adolescent depression and suicidal behavior.

    Voices of the Filipino Community Describing the Importance of Family in Understanding Adolescent Behavioral Health Needs · 2017 · DOI

  • CONCLUSIONS: Future investigation of the influence of separation anxiety of parents on adolescent autonomy development is warranted, as well as the contribution of autonomy development to diabetes self-management behaviours of adolescents.

    Parenting, autonomy and self‐care of adolescents with Type 1 diabetes · 2008 · DOI

  • In light of the substantial needs of `grandfamilies' and the lack of data about `grandkin,' this article provides a first step in describing the major challenges experienced by a grandson and his grandmother.

    Living with Grandma · 2003 · DOI

  • The authors show how parents’ cancer affected their children at schoool; how children do not disclose important personal and familial information; and that this can mean that problems in school are not fully understood nor supported.

    Pastoral Care for Children of Cancer Patients · 2001 · DOI

  • Programs or strategies that enhance caring values, attitudes, and behaviors by providing students with opportunities to discuss caring, to demonstrate caring to others, and to participate thoughtfully in caring relationships with peers and adults are scarce.

    Caring for Others and Being Cared For: Students Talk Caring in School · 1995

  • Some of the major limitations cited in this study which might prevent the direct transfer of our findings into actual practice are amenable to further research.

    The adolescent's expectations of how the potentially helpful person will act<sup>1</sup> · 1955 · DOI

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41 open questions have been extracted from the limitations and future-work passages of 1,017 Family Support in Illness papers in our library. Each one below links back to the study that raised it, so you can read the original claim in context.

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