Long Term Care Planning for Individuals with Intellectual/Developmental Disabilities: Sibling Caregivers’ Barriers & Suggestions for Intervention Nirupa Galagedera1, Caren Steinway LMSW MPH2, Vanessa Chicas2, Matthew Schwartz2, Sophia Jan MD, MSHP, 1,2 1Donald
and Barbara Zucker School of Medicine at Hofstra/Northwell, 2Division of General Pediatrics, Cohen Children’s Medical Center of Northwell Health
Results
Background Siblings of Individuals with Intellectual and Developmental Disabilities (IIDD) often engage as secondary caregivers and eventually as primary caregivers for their siblings with IDD.1 These individuals require planning for long term care, which is a multifaceted process spanning the domains of caregiver designation, housing, legal, financial, daily routine, medical, and transportation matters.2 Absent or insufficient long-term care (LTC) planning directly impedes care and can cause increased stress and deterioration of caregiver psychosocial health.3 Lack of planning can also lead the IIDD to become at risk for negative health outcomes. While some research has investigated parent caregiver perspectives, barriers, and desires of the LTC planning process, there is a paucity of research on the sibling experience.4,5
Major Themes of Identified LTC Planning Barriers (n=78 qualitatively coded nodes) Systemic barriers 9%
Lack of continuity 19%
Mismatch between parent expectations & sibling intentions 23% Siblings' own life uncertainty 12%
Objectives
Lack of information 37%
Major Themes of Identified LTC Planning Facilitators (n=62 qualitatively coded nodes) Tools- online & Social legistlative recreational 8% activities 6% Open parentsibling dialogue 6% Skills training 7% Background interest/occupation 15%
The primary aim of this study was to employ qualitative methods to ascertain barriers sibling caregivers encounter in striving to plan the complex needs of their sibling with IDD. A secondary aim was to identify suggestions for a LTC planning intervention.
• Focus groups were conducted with 12 siblings across 5 states. • Qualitative data was coded using NVivo software and analyzed by three research staff members using a grounded theory approach. • Sibling participants completed surveys prior to the focus group, which included demographic information about the participant and their sibling with IDD (Table 1). • Average Activities of Daily Living/Instrument of Activities of Daily Living Score for IIDD of whom siblings participated in focus groups was 16.3, indicating severe disability.
Table 1: Demographic Variables of Focus Group Participants Sample Size N (%)
Age (M + SD, range) Gender Male Female Race
Ethnicity
Sibling 27.4 + 9.8 (14-52)
Individual with IDD 22.9 + 8.0 (7, 32)
9 (75.0) 3 (25.0)
10 (83.3) 2 (16.7)
White 11 (91.7) Black or African 1 (8.3) American
11 (91.7) 1 (8.3)
Hispanic 0 Non-Hispanic 12 (100)
0 12 (100)
Medicaid waiver Yes No On waitlist I don’t know
3 (60.0) 0 0 2 (40.0)
6 (50.0) 1 (8.3) 2 (16.7) 3 (25.0)
Major Themes in identified LTC Barriers (n=78) Mismatch between parent expectations & sibling intentions Siblings’ own life uncertainty Lack of information Lack of continuity
Systemic barriers
Table 3: Selected LTC Planning Intervention Suggestions
Major Themes of LTC Planning Intervention Selected Website-Based Intervention Suggestions Suggestions (n= 154) Features to Incorporate
Respecting autonomy of IIDD 32%
Support from groups of people 26%
Table 2: Sample Quotations from Focus Group Participants
Methods
Variables
Results Cont’d
Selected Quotations “But that sometimes involves them [parents] having to confront a reality they don’t want to confront, either.” “Yeah. I think, now, at this point it’s really about me having that control. It’s just I never – my face has never been shown as the authority, so that’s what I’m kind of worried about too.” “So that – I think that’s a source of like a little bit of anxiety I think in our house is just because we can’t necessarily plan on anything yet because we don’t know where we all are and where we’re going to be. I think that’s the biggest issue. “ “And then it’s like oh, do you know you could have a person come in and help him bathe in the morning? And we’re like no. Do you know this? No.” “…I don’t even know the difference between guardianship versus medical power of attorney.” “I think I agree, because that’s when the biggest anxiety is, just kind of like that transition from school to kind of - I think that was to your point, like to what’s next? What’s after school? They’re kind of in the system and doing well and they’ve got all that support when they’re younger. But the fear and the angst starts coming with when they have to transition out of that system, and then where do they go?” “Because I always say it’s like we’re here on this bridge, and then – or on the cliff [to transition out of pediatric care], and the adult world’s here and there’s no bridge to get us there, so I think this would be helpful if that was there.” “Transportation you can run into a lot of issues with because each county does not have exactly the greatest transportation in the world.”
Major Themes in identified LTC Selected Quotations Facilitators (n=62) Respecting “I think it’d start probably with – it’s all about them and what they wanna do. And even if they autonomy of IIDD don’t say or they don’t – can’t say. It’s what are they interested in? What do they wanna – Figure 7: Independent CRISPR knockout CDK4 CDK6 Would it be best if they had a little apartment, or would it be what would be of best fororthem? does not cause dropout in most breast cancer lines best if they lived withcellme or with [name]… ? Or in a home with other people? It depends, studied. what would be – fit best with him and what he does. “ “And then on the other end of that is just how she’s going to get treated if she gets put in a housing place. I want to make sure she’s treated well. I want to make sure she’s respected, understood – and they’re big questions.” Support from “I think along those same lines, I notice whenever especially my parents were able to connect groups of people with other similar families, that’s always made things easier…”
Start at early age Prompted questions to individualize tool Absence of overwhelming input requirement or technical jargon Automated reminders & notifications Viewable & editable by entire care team Organization of Relative ranking of resources for credibility Resources Ability to reflect on existing resources Social Activities & For IIDD: (1) to avoid isolation, (2) to search for recreational activities of Communities interest, (3) to instill life with purpose & joy, especially beyond work, and (4) to connect in a safe environment For caregivers: (1) to seek social support & advice, and (2) to seek sharing of common experiences Legal Guardianship Communications & Educate IIDD about: (1) social skills including interpersonal skills & Behavioral Information triggers, (2) intimate relationships, and (3) internet safety & etiquette Educate others about: (1) unique behaviors of IIDD, especially relevant in emergency situations where different communication methods can impede care, and (2) IIDD’s level of functionality Accessibility Accommodations for individuals with difficulty focusing Using medium based on individuals’ disability to respect their autonomy
Conclusion Through focus groups with siblings of IIDD, we identified barriers and facilitators to the LTC planning process from the perspective of sibling caregivers, many of which were newly identified. We found: • obstacles previously reported to be only concerning to parent but not sibling caregivers, including systemic barriers & navigation through insufficient knowledge, as well as concerns about IIDD vulnerability, to be restrictive to siblings too • unlike parents in existing literature, sibling caregivers placed a large emphasis on the principle of autonomy as a motivating force in the LTC planning process. This included the importance of the IIDD’s active role in both conversations about planning and the day-to-day happenings of their final destination, and protection against exploitation of their vulnerability • suggestions about design features and content for a LTC planning intervention to serve IIDD, families, and other care team members Future steps are to implement the suggestions in the creation of a website-based intervention. Limitations of this study included the limited diversity of focus group participants, and the inherent nature of focus groups to serve as an echo chamber and potentially minimize dissenting opinions.
Resources 1. Heller, T., Kramer, J. (2009). Involvement of Adult Siblings of Persons with Developmental Disabilties in Future Planning. Intellectual and Development Disabilities, 47(3): 208-219. https://doi.org/10.1352/1934-9556-47.3.208 2. Devaney, M., and Jan, S. (2019). Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives. Journal of Applied Research in Intellectual Disabilties, 32(5): 1103-1115. doi: 10.1111/jar.12600. 3. Burke, M., Lee,WillC.,addArnold, C., & Owen, A. (2017). The perceptions of professionals toward siblings of individuals with intellectual and developmental disabilities, Intellectual and Developmental Disabilities, 55(2): 72-83. https://doi.org/10.1352/1934-9556-55.2.72 4. Burke, M., Arnold, C., and Owen, A. (2018). Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals with Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities 56(2): 90-100. doi: 10.1352/1934-9556-56.2.90. 5. Lee, C., Burke, M., & Stelter, M. (2019). Exploring the perspectives of parents and siblings toward future planning for individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 57(3): 198-211. doi:10.1352/1934-9556-57.3.198. 6. Brady, A., Burke, M., Landon, T., & Oertle, K. (2019). Siblings of adults with intellectual and developmental disabilities: their knowledge and perspectives on guardianship and its alternatives. Journal of Applied Research in Intellectual Disabilities, 32(5). https://doi-org.medproxy.hofstra.edu/10.1111/jar.12597 7. Burke, M., Lee, C., Hall, S., & Rossetti Z. (2019). Understanding decision making among individuals with Intellectual and Developmental Disabilities (IDD) & their siblings. Intellectual and Development Disabilities, 57(1): 26-41. http: 10.1352/1934-9556-57.1.26 8. Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8–17. https://doi.org/10.1016/j.dhjo.2012.08.005 9. NVivo qualitative data analysis Software. (2015). (Version 11). 10. Rosetti, Z., Lee, C., Burke, M., and Hall, S. (2020). Perspectives about adult sibling relationships: A dyadic analysis of siblings with and without intellectual and developmental disabilities. Research in Developmental Disabilities, 96: 103538. https://doi.org/10.1016/j.ridd.2019.103538 11. Shivers, C. (2019). Self-Reported Guilt Among Adult Siblings of People with Intellectual and Developmental Disabilities. Americal Journal on Intellectual and Developmental Disabilities, 124(5), 470-477. https://doi.org/10.1352/1944-7558124.5.470 12. Tie, YC., Birks, M., and Francis, K. (2019). Grounded theory research A design framework for novice researchers. SAGE Open Medicine, 7. doi: 10.1177/2050312118822927