662
Views
0
CrossRef citations to date
0
Altmetric
Review Article

Whose voice is it anyway? Adults with intellectual disabilities and future planning: A scoping review of qualitative studies

, , ORCID Icon, , &
Pages 215-228 | Received 30 May 2023, Accepted 07 Dec 2023, Published online: 23 Jan 2024

References

  • Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
  • Australian Institute of Health and Welfare [AIHW]. (2011). Disability support services 2009-2010: Report on Services Provided Under the National Disability Agreement. https://www.aihw.gov.au/reports/disability/disability-support-services-2009-10/contents/summary.
  • Bibby, R. (2012). “I hope he goes first”: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues? A literature review. British Journal of Learning Disabilities, 41(2), 94–105. https://doi.org/10.1111/j.1468-3156.2012.00727.x
  • Bigby, C. (1996). Transferring responsibility: The nature and effectiveness of parental planning for the future of adults with intellectual disability who have remained at home until mid-life. Journal of Intellectual & Developmental Disability, 21(4), 295–312. https://doi.org/10.1080/13668259600033211
  • Bigby, C. (2000). Moving on without parents. Planning, transitions and sources of support for middle-aged and older adults with intellectual disability. Paul H. Brookes Publishing Co.
  • Brennan, D., McCausland, D., O’Donovan, M. A., Eustace-Cook, J., McCallion, P., & McCarron, M. (2020). Approaches to and outcomes of future planning for family carers of adults with an intellectual disability: A systematic review. Journal of Applied Research in Intellectual Disabilities, 33(6), 1221–1233. https://doi.org/10.1111/jar.12742
  • Brennan, D., Murphy, R., McCallion, P., & McCarron, M. (2018). “What’s going to happen when we’re gone?” Family caregiving capacity for older people with an intellectual disability in Ireland. Journal of Applied Research in Intellectual Disabilities, 31(2), 226–235. https://doi.org/10.1111/jar.12379
  • Burke, M., Arnold, C., & Owen, A. (2018). Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities. Intellectual & Developmental Disabilities, 56(2), 90–100. https://doi.org/10.1352/1934-9556-56.2.90
  • Covelli, V., Raggi, A., Paganelli, C., & Leonardi, M. (2018). Family members and health professionals’ perspectives on future life planning of ageing people with Down syndrome: A qualitative study. Disability & Rehabilitation, 40(24), 2867–2874. https://doi.org/10.1080/09638288.2017.1362595
  • Davys, D., Mitchell, D., & Haigh, C. (2011). Adult sibling experience, roles, relationships and future concerns – A review of the literature in learning disabilities. Journal of Clinical Nursing, 20(19-20), 2837–2853. https://doi.org/10.1111/j.1365-2702.2010.03530.x
  • Davys, D., Mitchell, D., & Haigh, C. (2015). Futures planning – Adult sibling perspectives. British Journal of Learning Disabilities, 43(3), 219–226. https://doi.org/10.1111/bld.12099
  • Deville, J., Davies, H., Kane, R., Nelson, D., & Mansfield, P. (2019). Planning for the future: Exploring the experiences of older carers of adult children with a learning disability. British Journal of Learning Disabilities, 47(3), 208–214. https://doi.org/10.1111/bld.12279
  • Hole, R. D., Stainton, T., & Wilson, L. (2013). Ageing adults with intellectual disabilities: Self-advocates’ and family members’ perspectives about the future. Australian Social Work, 66(4), 571–589. https://doi.org/10.1080/0312407X.2012.689307
  • Leane, M. (2020). “I don’t care anymore is she wants to cry through the whole conversation, because it needs to be addressed”: Adult siblings’ experiences of the dynamics of future care planning for brothers and sisters with a developmental disability. Journal of Applied Research in Intellectual Disabilities, 33(5), 950–961. https://doi.org/10.1111/jar.12716
  • Lee, C. E., & Burke, M. M. (2020). Future planning among families of individuals with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 94–107. https://doi.org/10.1111/jppi.12324
  • Lee, C. E., & Burke, M. M. (2021). A pilot study of a future planning program for siblings of people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 59(1), 70–83. https://doi.org/10.1352/1934-9556-59.1.70
  • Lee, C. E., Burke, M. M., & Stelter, C. R. (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. https://doi.org/10.1352/1934-9556-57.3.198
  • Lindahl, J., Stollon, N., Wu, K., Liang, A., Changolkar, S., Steinway, C., Trachtenberg, S., Coccia, A., Devaney, M., & 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 Disabilities, 32(5), 1103–1115. https://doi.org/10.1111/jar.12600
  • McCausland, D., McCallion, P., Brennan, D., & McCarron, M. (2019). Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers. Journal of Intellectual Disabilities, 23(3), 413–431. https://doi.org/10.1177/1744629519872658
  • Munn, Z., Peters, M. D. J., Stern, C., Tufanaru, C., McArthur, A., & Aromataris, E. (2018). Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18(1), 143. https://doi.org/10.1186/s12874-018-0611-x
  • National Disability Insurance Agency. (2023, April). NDIS supported decision making policy. National Disability Insurance Scheme. https://www.ndis.gov.au/about-us/policies/supported-decision-making-policy.
  • O’Brien, P., García Iriarte, E., Mc Conkey, R., Butler, S., & O’Brien, B. (2022). Inclusive research and intellectual disabilities: Moving forward on a road less well-travelled. Social Sciences, 11(10), 483. https://doi.org/10.3390/socsci11100483
  • Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffman, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372, n71. https://doi.org/10.1136/bmj.n71
  • Peters, M. D. J., Godfrey, C., McInerney, P., Munn, Z., Tricco, A. C., & Khalil, H. (2020). Chapter 11: Scoping reviews (2020 version). In E. Aromataris, & Z. Munn (Eds.), JBI manual for evidence synthesis (pp. 406–451). Joanna Briggs Institute.
  • Reppermund, S., Srasuebkul, P., Dean, K., & Trollor, J. N. (2020). Factors associated with death in people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 33(3), 420–429. https://doi.org/10.1111/jar.12684
  • Roller, M. R., & Lavrakas, P. J. (2015). Applied qualitative research design: A total quality framework approach. The Guilford Press.
  • Ryan, A., Taggart, L., Truesdale-Kennedy, M., & Slevin, E. (2014). Issues in caregiving for older people with intellectual disabilities and their ageing family carers: A review and commentary. International Journal of Older People Nursing, 9(3), 217–226. https://doi.org/10.1111/opn.12021
  • Stancliffe, R. J. (2020). Choice availability and people with intellectual disability. In R. J. Stancliffe, M. L. Wehmeyer, K. A. Shogren, & B. H. Abery (Eds.), Choice, preference, and disability (pp. 3–26). Springer.
  • Strnadová, I. (2019). Transitions in the lives of older adults with intellectual disabilities: “Having a sense of dignity and independence”. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 58–66. https://doi.org/10.1111/jppi.12273
  • Taggart, L., Truesdale-Kennedy, M., Ryan, A., & McConkey, R. (2012). Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities, 16(3), 217–234. https://doi.org/10.1177/1744629512456465
  • Thakkar, H. (2018). “It’s like me leaving a manual of me behind”: Parents talk about succession planning of long-term care and support of their disabled adult children with high and complex needs. Aotearoa New Zealand Social Work, 30(2), 3–15. https://doi.org/10.11157/anzswj-vol30iss2id506
  • Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., … Straus, S. E. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
  • United Nations. (2006). Convention on the rights of persons with disabilities (CRPD). https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd.
  • United Nations. (2017). Adequate housing as a component of the right to an adequate standard of living, and the right to non-discrimination in this context. https://documents-dds-ny.un.org/doc/UNDOC/GEN/N17/212/20/PDF/N1721220.pdf?OpenElement.
  • Walker, R., & Hutchinson, C. (2018). Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: A systematic review of qualitative studies. Journal of Intellectual & Developmental Disability, 43(4), 453–462. https://doi.org/10.3109/13668250.2017.1310823
  • Walker, R., & Hutchinson, C. (2019). Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability. Ageing & Society, 39(7), 1512–1527. https://doi.org/10.1017/S0144686X18000144
  • Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. Jessica Kingsley Publishers.
  • Wilson, J., Tilse, C., White, B., & Rosenman, L. (2021). What is “fair and reasonable”? Norms and strategies guiding the distribution of assets by testators who have an adult child with intellectual disability. Journal of Intellectual & Developmental Disability, 46(2), 175–185. https://doi.org/10.3109/13668250.2020.1765997
  • Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities. Social indicators research series 41 (pp. 241–278). Springer Science + Business Media.