Long-term services and support for older individuals with intellectual and developmental disabilities in Africa: a systematic review

References

• Aldersey, H. M. (2012). Family perceptions of intellectual disability: Understanding and support in Dar es Salaam. African Journal of Disability, 1(1), 1. https://doi.org/10.4102/ajod.v1i1.32
   PubMedGoogle Scholar
• Aldersey, H. M., Francis, G. L., Haines, S. J., & Chiu, C. Y. (2017). Family quality of life in the Democratic Republic of the Congo. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 78–15. https://doi.org/10.1111/jppi.12189
   Web of Science ®Google Scholar
• Alftberg, Å., Johansson, M., & Ahlström, G. (2021). Ambivalence among staff regarding aging with intellectual disabilities: Experiences and reflections. Journal of Intellectual Disabilities: JOID, 25(2), 192–209. https://doi.org/10.1177/1744629519874997
   PubMed Web of Science ®Google Scholar
• Almalky, H. A. (2020). Employment outcomes for individuals with intellectual and developmental disabilities: A literature review. Children and Youth Services Review, 109, 104656. https://doi.org/10.1016/j.childyouth.2019.104656
   Web of Science ®Google Scholar
• Alonso-Sardón, M., Iglesias-de-Sena, H., Fernández-Martín, L. C., & Mirón-Canelo, J. A. (2019). Do health and social support and personal autonomy have an influence on the health-related quality of life of individuals with intellectual disability? BMC Health Services Research, 19(1), 63. https://doi.org/10.1186/s12913-018-3856-5
   PubMedGoogle Scholar
• Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 360–375. https://doi.org/10.1352/1934-9556-51.5.360
   PubMed Web of Science ®Google Scholar
• American Psychiatric Association. (2013). The diagnostic and statistical manual of mental disorders (5th ed.).
   Google Scholar
• Anderson, S., Parmar, J., Dobbs, B., & Tian, P. G. J. (2021). A tale of two solitudes: Loneliness and anxiety of family caregivers caring in community homes and congregate care. International Journal of Environmental Research and Public Health, 18(19), 10010. https://doi.org/10.3390/ijerph181910010
   PubMed Web of Science ®Google Scholar
• Avoke, M. (2002). Models of disability in the labelling and attitudinal discourse in Ghana. Disability & Society, 17(7), 769–777. https://doi.org/10.1080/0968759022000039064
   Web of Science ®Google Scholar
• Bennett, J., Lubben, F., Hogarth, S., & Campbell, B. (2005). Systematic reviews of research in science education: Rigour or rigidity? International Journal of Science Education, 27(4), 387–406. https://doi.org/10.1080/0950069042000323719
   Web of Science ®Google Scholar
• Bishop-Fitzpatrick, L., Mazefsky, C. A., Minshew, N. J., & Eack, S. M. (2015). The relationship between stress and social functioning in adults with autism spectrum disorder and without intellectual disability. Autism Research, 8(2), 164–173. https://doi.org/10.1002/aur.1433
   PubMed Web of Science ®Google Scholar
• Bornstein, M. H., & Hendricks, C. (2013). Screening for developmental disabilities in developing countries. Social Science & Medicine (1982), 97, 307–315. https://doi.org/10.1016/j.socscimed.2012.09.049
   PubMed Web of Science ®Google Scholar
• Braddock, D., & Heller, T. (1985). The closure of mental retardation institutions I: Trends in the United States. Mental Retardation, 23(4), 168–176.
   PubMedGoogle Scholar
• Buntinx, W. H., & Schalock, R. L. (2010). Models of disability, quality of life, and individualized supports: Implications for professional practice in intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7(4), 283–294. https://doi.org/10.1111/j.1741-1130.2010.00278.x
   Web of Science ®Google Scholar
• Burrell, B., & Trip, H. (2011). Reform and community care: Has de-institutionalisation delivered for people with intellectual disability? Nursing Inquiry, 18(2), 174–183. https://doi.org/10.1111/j.1440-1800.2011.00522.x
   PubMedGoogle Scholar
• Capri, C., & Swartz, L. (2018). ‘We are actually, after all, just children’: Caring societies and South African infantilisation of adults with intellectual disability. Disability & Society, 33(2), 285–308. https://doi.org/10.1080/09687599.2017.1409102
   Web of Science ®Google Scholar
• Clement, T., & Bigby, C. (2009). Breaking out of a distinct social space: Reflections on supporting community participation for people with severe and profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 22(3), 264–275. https://doi.org/10.1111/j.1468-3148.2008.00458.x
   Web of Science ®Google Scholar
• Cobigo, V., Ouellette-Kuntz, H., Lysaght, R., & Martin, L. (2012). Shifting our conceptualization of social inclusion. Stigma Research and Action, 2(2), 75–84. https://doi.org/10.5463/sra.v1i3.45
   Google Scholar
• Dempsey, I., & Ford, J. (2009). Employment for people with intellectual disability in Australia and the United Kingdom. Journal of Disability Policy Studies, 19(4), 233–243. https://doi.org/10.1177/1044207308314946
   Google Scholar
• Duggan, C., & Linehan, C. (2013). The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature. British Journal of Learning Disabilities, 41(3), 199–207. https://doi.org/10.1111/bld.12040
   Web of Science ®Google Scholar
• Eady, N., Courtenay, K., & Strydom, A. (2015). Pharmacological management of behavioral and psychiatric symptoms in older adults with intellectual disability. Drugs & Aging, 32(2), 95–102. https://doi.org/10.1007/s40266-014-0236-7
   PubMed Web of Science ®Google Scholar
• Emerson, E., Fortune, N., Llewellyn, G., & Stancliffe, R. (2021). Loneliness, social support, social isolation and wellbeing among working age adults with and without disability: Cross-sectional study. Disability and Health Journal, 14(1), 100965. https://doi.org/10.1016/j.dhjo.2020.100965
   PubMed Web of Science ®Google Scholar
• Evenhuis, H. M., Hermans, H., Hilgenkamp, T. I., Bastiaanse, L. P., & Echteld, M. A. (2012). Frailty and disability in older adults with intellectual disabilities: Results from the healthy aging and intellectual disability study. Journal of the American Geriatrics Society, 60(5), 934–938. https://doi.org/10.1111/j.1532-5415.2012.03925.x
   PubMed Web of Science ®Google Scholar
• Friedman, C. (2019). Family members of people with disabilities’ explicit and implicit disability attitudes. Rehabilitation Psychology, 64(2), 203–211. https://doi.org/10.1037/rep0000265
   PubMed Web of Science ®Google Scholar
• Glasson, E., & Bittles, A. H. (2008). The impact of ageing in people with intellectual and developmental disability. In E.B. Bodzsar (Ed.), Ageing related problems in past and present populations (pp. 27–43). Plantin Publications & Press Ltd.
   Google Scholar
• Grey, J. M., Totsika, V., & Hastings, R. P. (2018). Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability. Journal of Applied Research in Intellectual Disabilities: JARID, 31(S2), 191–202. https://doi.org/10.1111/jar.12353
   PubMedGoogle Scholar
• Hahn, J. E., Fox, S., & Janicki, M. P. (2015). Aging among older adults with intellectual and developmental disabilities: Setting national goals to address transitions in health, retirement, and late-life. Inclusion, 3(4), 250–259.
   Google Scholar
• Hall, E. (2010). Spaces of social inclusion and belonging for people with intellectual disabilities. Journal of Intellectual Disability Research: JIDR, 54(s1), 48–57. https://doi.org/10.1111/j.1365-2788.2009.01237.x
   PubMedGoogle Scholar
• Harpazi, S., Regev, D., & Snir, S. (2022). What does the literature teach us about research, theory, and the practice of art therapy for individuals with intellectual developmental disabilities? A scoping review. The Arts in Psychotherapy, 82, 101988. https://doi.org/10.1016/j.aip.2022.101988
   Web of Science ®Google Scholar
• Haveman, M., Heller, T., Lee, L., Maaskant, M., Shooshtari, S., & Strydom, A. (2010). Major health risks in aging persons with intellectual disabilities: An overview of recent studies. Journal of Policy and Practice in Intellectual Disabilities, 7(1), 59–69. https://doi.org/10.1111/j.1741-1130.2010.00248.x
   Web of Science ®Google Scholar
• Hervie, V. M. (2013). [Shut up!: Social inclusion of children with intellectual disabilities in Ghana: An empirical study of how parents and teachers experience socialinclusion [ie social inclusion] of children with intellectual disabilities] [Master’s thesis]. UniversitetetNordland.
   Google Scholar
• Jahoda, A., Banks, P., Dagnan, D., Kemp, J., Kerr, W., & Williams, V. (2009). Starting a new job: The social and emotional experience of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 22(5), 421–425. https://doi.org/10.1111/j.1468-3148.2009.00497.x
   Web of Science ®Google Scholar
• Janicki, M. P., & Keller, S. M. (2014). Viability of a dementia advocacy effort for adults with intellectual disability: Using a national task group approach. Journal of Policy and Practice in Intellectual Disabilities, 11(3), 176–191. https://doi.org/10.1111/jppi.12085
   Web of Science ®Google Scholar
• Jegatheesan, B., Fowler, S., & Miller, P. J. (2010). From symptom recognition to services: How South Asian Muslim immigrant families navigate autism. Disability & Society, 25(7), 797–811. https://doi.org/10.1080/09687599.2010.520894
   Web of Science ®Google Scholar
• Karam, S. M., Riegel, M., Segal, S. L., Félix, T. M., Barros, A. J. D., Santos, I. S., Matijasevich, A., Giugliani, R., & Black, M. (2015). Genetic causes of intellectual disability in a birth cohort: A population-based study. American Journal of Medical Genetics. Part A, 167(6), 1204–1214. https://doi.org/10.1002/ajmg.a.37011
   PubMed Web of Science ®Google Scholar
• Kassah, A. K., Kassah, B. L. L., & Agbota, T. K. (2012). Abuse of disabled children in Ghana. Disability & Society, 27(5), 689–701. https://doi.org/10.1080/09687599.2012.673079
   Web of Science ®Google Scholar
• Kelly, C., Thornton, A., Anthony, E. K., & Krysik, J. (2021). —Love. Stability. Boundaries.” Kinship perspectives of social-emotional well-being of youth residing in out-of-home care. Children and Youth Services Review, 127, 106097. https://doi.org/10.1016/j.childyouth.2021.106097
   Web of Science ®Google Scholar
• Kisanji, J. (1998). Culture and disability: An analysis of inclusive education based on African folklore. International Journal of Disability Development and Education, 1–18.
   Google Scholar
• Knapp, M., Comas-Herrera, A., Astin, J., Beecham, J., & Pendaries, C. (2005). Intellectual disability, challenging behaviour and cost in care accommodation: What are the links? Health & Social Care in the Community, 13(4), 297–306. https://doi.org/10.1111/j.1365-2524.2005.00539.x
   PubMed Web of Science ®Google Scholar
• Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons with disabilities as an unrecognized health disparity population. American Journal of Public Health, 105(Suppl 2), S198–S206. https://doi.org/10.2105/AJPH.2014.302182
   PubMed Web of Science ®Google Scholar
• Larson, S. A., Lakin, K. C., Salmi, P., Smith, D., Scott, N., & Webster, A. (2011). Children and youth with intellectual or developmental disabilities living in congregate care settings (1977 to 2009): Healthy people 2010 objective 6.7 b outcomes (revised). Intellectual and Developmental Disabilities, 49(3), 209–213. https://doi.org/10.1352/1934-9556-49.3.209
   PubMed Web of Science ®Google Scholar
• Lawson, A., & Beckett, A. E. (2021). The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights, 25(2), 348–379. https://doi.org/10.1080/13642987.2020.1783533
   Web of Science ®Google Scholar
• Lunsky, Y., De Oliveira, C., Wilton, A., & Wodchis, W. (2019). High health care costs among adults with intellectual and developmental disabilities: A population-based study. Journal of Intellectual Disability Research: JIDR, 63(2), 124–137. https://doi.org/10.1111/jir.12554
   PubMed Web of Science ®Google Scholar
• Marks, B., Sisirak, J., Chang, Y. C., & Murphy, R. (2019). Impact of the HealthMatters Train-the-Trainer Program on the health and health behaviors of staff supporting adults with intellectual and developmental disabilities. Workplace Health & Safety, 67(8), 423–435. https://doi.org/10.1177/2165079919828739
   PubMed Web of Science ®Google Scholar
• Marks, B., Sisirak, J., & Heller, T. (2010). Health matters: The exercise and nutrition health education curriculum for people with developmental disabilities. Brookes Publishing Company.
   Google Scholar
• Martin, L., & Cobigo, V. (2011). Definitions matter in understanding social inclusion. Journal of Policy and Practice in Intellectual Disabilities, 8(4), 276–282. https://doi.org/10.1111/j.1741-1130.2011.00316.x
   Web of Science ®Google Scholar
• Matheis, M. (2019). Philosophy of care. In Johnny L Matson (Ed.), Handbook of intellectual disabilities: Integrating theory, research, and practice (pp. 75–89).
   Google Scholar
• McCausland, D., McCallion, P., Cleary, E., & McCarron, M. (2016). Social connections for older people with intellectual disability in Ireland: Results from wave one of IDS-TILDA. Journal of Applied Research in Intellectual Disabilities: JARID, 29(1), 71–82. https://doi.org/10.1111/jar.12159
   PubMed Web of Science ®Google Scholar
• Mckenzie, J. A., McConkey, R., & Adnams, C. (2013). Intellectual disability in Africa: Implications for research and service development. Disability and Rehabilitation, 35(20), 1750–1755. https://doi.org/10.3109/09638288.2012.751461
   PubMed Web of Science ®Google Scholar
• McNally, A., & Mannan, H. (2013). Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania. African Journal of Disability, 2(1), 21. https://doi.org/10.4102/ajod.v2i1.21
   PubMedGoogle Scholar
• Meer, T., & Combrinck, H. (2015). Invisible intersections: Understanding the complex stigmatisation of women with intellectual disabilities in their vulnerability to gender-based violence. Agenda, 29(2), 14–23. https://doi.org/10.1080/10130950.2015.1039307
   Web of Science ®Google Scholar
• Meer, T., & Combrinck, H. (2017). Help, harm or hinder? Non-governmental service providers’ perspectives on families and gender-based violence against women with intellectual disabilities in South Africa. Disability & Society, 32(1), 37–55. https://doi.org/10.1080/09687599.2016.1269639
   Web of Science ®Google Scholar
• Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., Altman, D., Antes, G., Atkins, D., Barbour, V., Barrowman, N., Berlin, J. A., & Clark, J. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement (Chinese edition). Journal of Chinese Integrative Medicine, 7(9), 889–896. https://doi.org/10.3736/jcim20090918
   Google Scholar
• Moher, D., Shamseer, L., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., & Stewart, L. A. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Systematic Reviews, 4(1), 1–9. https://doi.org/10.1186/2046-4053-4-1
   PubMed Web of Science ®Google Scholar
• Moher, D., Stewart, L., & Shekelle, P. (2016). Implementing PRISMA-P: Recommendations for prospective authors. Systematic Reviews, 5(1), 15. https://doi.org/10.1186/s13643-016-0191-y
   PubMedGoogle Scholar
• Moore, K., McDonald, P., & Bartlett, J. (2018). Emerging trends affecting future employment opportunities for people with intellectual disability: The case of a large retail organisation. Journal of Intellectual & Developmental Disability, 43(3), 328–338. https://doi.org/10.3109/13668250.2017.1379250
   Web of Science ®Google Scholar
• Mung’omba, J. (2008). Comparative policy brief: Status of intellectual disabilities in the Republic of Zambia. Journal of Policy and Practice in Intellectual Disabilities, 5(2), 142–144. https://doi.org/10.1111/j.1741-1130.2008.00163.x
   Web of Science ®Google Scholar
• Munn, Z., Aromataris, E., Tufanaru, C., Stern, C., Porritt, K., Farrow, J., Lockwood, C., Stephenson, M., Moola, S., Lizarondo, L., McArthur, A., Peters, M., Pearson, A., & Jordan, Z. (2019). The development of software to support multiple systematic review types: The Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI). JBI International Journal of Evidence-Based Healthcare, 17(1), 36–43. https://doi.org/10.1097/XEB.0000000000000152
   PubMed Web of Science ®Google Scholar
• Naami, A., Parry, R. A., & Ofori, A. (2022). Perspective chapter: Disability-inclusive sustainable services–The role of social workers. In Wolmesjö, Maria (Ed.), Social work-perspectives on leadership and organisation (Vol. 185, pp. 1349–1356). IntechOpen. http://doi.org/10.5772/intechopen.96846
   Google Scholar
• Overmars-Marx, T., Thomése, F., Verdonschot, M., & Meininger, H. (2014). Advancing social inclusion in the neighbourhood for people with an intellectual disability: An exploration of the literature. Disability & Society, 29(2), 255–274. https://doi.org/10.1080/09687599.2013.800469
   Web of Science ®Google Scholar
• Patel, V., Saxena, S., Lund, C., Thornicroft, G., Baingana, F., Bolton, P., Chisholm, D., Collins, P. Y., Cooper, J. L., Eaton, J., Herrman, H., Herzallah, M. M., Huang, Y., Jordans, M. J. D., Kleinman, A., Medina-Mora, M. E., Morgan, E., Niaz, U., Omigbodun, O., … UnÜtzer, J. (2018). The Lancet Commission on global mental health and sustainable development. Lancet, 392(10157), 1553–1598. https://doi.org/10.1016/S0140-6736(18)31612-X
   PubMed Web of Science ®Google Scholar
• Popay, J., Roberts, H., Sowden, A., Petticrew, M., Arai, L., Rodgers, M., Britten, N., Roen, K., & Duffy, S. (2006). Guidance on the conduct of narrative synthesis in systematic reviews. A Product from the ESRC Methods Programme Version, 1(1), b92.
   Google Scholar
• Power, A. (2008). Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Social Science & Medicine (1982), 67(5), 834–843. https://doi.org/10.1016/j.socscimed.2008.05.023
   PubMed Web of Science ®Google Scholar
• Roberts, M., Mogan, C., & Asare, J. B. (2014). An overview of Ghana’s mental health system: Results from an assessment using the World Health Organization’s Assessment Instrument for Mental Health Systems (WHO-AIMS). International Journal of Mental Health Systems, 8, 1–16. https://doi.org/10.1186/1752-4458-8-16
   PubMed Web of Science ®Google Scholar
• Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2014). The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence. Research in Developmental Disabilities, 35(10), 2450–2462. https://doi.org/10.1016/j.ridd.2014.06.007
   PubMed Web of Science ®Google Scholar
• Rohleder, P., & Swartz, L. (2009). Providing sex education to persons with learning disabilities in the era of HIV/AIDS: Tensions between discourses of human rights and restriction. Journal of Health Psychology, 14(4), 601–610. https://doi.org/10.1177/1359105309103579
   PubMed Web of Science ®Google Scholar
• Roll, A. E., & Koehly, L. M. (2020). One social network, two perspectives: Social networks of people with Down syndrome based on self-reports and proxy reports. Journal of Applied Research in Intellectual Disabilities: JARID, 33(6), 1188–1198. https://doi.org/10.1111/jar.12736
   PubMed Web of Science ®Google Scholar
• Sackey, E. (2015). Disability and political participation in Ghana: An alternative perspective. Scandinavian Journal of Disability Research, 17(4), 366–381. https://doi.org/10.1080/15017419.2014.941925
   Web of Science ®Google Scholar
• Salvador-Carulla, L., García-Gutiérrez, J. C., Gutiérrez-Colosía, M. R., Artigas-Pallarès, J., Ibánez, J. G., Pérez, J. G., Pla, M. N., Inés, F. A., Isus, S., Cereza, J. M., Poole, M., Lazcano, G. P., Monzon, P., Leiva, M., Parellada, M., Nonell, K. G., Martínez i Hernández, A., Rigau, E., & Martínez-Leal, R. (2013). Borderline intellectual functioning: Consensus guide and good practices. Journal of Psychiatry and Mental Health, 6(3), 109–120.
   Google Scholar
• Shooshtari, S., Naghipur, S., & Zhang, J. (2012). Unmet healthcare and social services needs of older Canadian adults with developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 9(2), 81–91. https://doi.org/10.1111/j.1741-1130.2012.00346.x
   Web of Science ®Google Scholar
• Šiška, J., & Beadle-Brown, J. (2023). Progress on deinstitutionalisation and the development of community living for persons with disabilities in Europe: Are we nearly there? Disability & Society, 38(8), 1476–1495. https://doi.org/10.1080/09687599.2022.2071676
   Web of Science ®Google Scholar
• Smith, D., Lakin, K. C., Larson, S., & Salmi, P. (2011). Changes in residential arrangements of persons with intellectual and developmental disabilities in the decade following the Olmstead decision of 1999. Intellectual and Developmental Disabilities, 49(1), 53–54. https://doi.org/10.1352/1934-9556-49.1.53
   PubMed Web of Science ®Google Scholar
• Stenfert Kroese, B., Willott, S., Taylor, F., Smith, P., Graham, R., Rutter, T., Stott, A., & Willner, P. (2016). Trauma-focussed cognitive-behaviour therapy for people with mild intellectual disabilities: Outcomes of a pilot study. Advances in Mental Health and Intellectual Disabilities, 10(5), 299–310. https://doi.org/10.1108/AMHID-05-2016-0008
   Google Scholar
• Stirling, M., Anderson, A., Ouellette-Kuntz, H., Hallet, J., Shooshtari, S., Kelly, C., Dawe, D. E., Kristjanson, M., Decker, K., & Mahar, A. L. (2021). A scoping review documenting cancer outcomes and inequities for adults living with intellectual and/or developmental disabilities. European Journal of Oncology Nursing, 54, 102011. https://doi.org/10.1016/j.ejon.2021.102011
   PubMed Web of Science ®Google Scholar
• Terreblanche, S. E. (2015). [A transformation strategy for protective workshops: Towards comprehensive services for adults with intellectual disability] [Doctoral dissertation]. Stellenbosch University.
   Google Scholar
• Trzaska, J. D. (2012). The use of a group mural project to increase self-esteem in high-functioning, cognitively disabled adults. The Arts in Psychotherapy, 39(5), 436–442. https://doi.org/10.1016/j.aip.2012.06.003
   Web of Science ®Google Scholar
• van Asselt-Goverts, A. E., Embregts, P. J. C. M., Hendriks, A. H. C., Wegman, K. M., & Teunisse, J. P. (2015). Do social networks differ? Comparison of the social networks of people with intellectual disabilities, people with autism spectrum disorders and other people ­living in the community. Journal of Autism and Developmental Disorders, 45(5), 1191–1203. https://doi.org/10.1007/s10803-014-2279-3
   PubMed Web of Science ®Google Scholar
• Van Niekerk, L., Coetzee, Z., Engelbrecht, M., Hajwani, Z., & Terreblanche, S. (2015). Time utilisation trends of supported employment services by persons with mental disability in South Africa. Work, 52(4), 825–833. https://doi.org/10.3233/WOR-152149
   PubMedGoogle Scholar
• Wanjagua, R. W. (2018). Identifying support needs for people with intellectual disability and their families through a family quality of life survey in Kenya.
   Google Scholar