Perceptions of Home Caregivers in Providing Care for People with Developmental Disorders and Severe Disabilities
(A Qualitative Study Using Thematic Analysis)
DOI:
https://doi.org/10.33193/eJHAS.10.2023.386Keywords:
Caregiver perceptions, Home caregivers, Caregiving, Home care, Severe disability, Developmental disordersAbstract
As home-based healthcare services expand in the Kingdom of Saudi Arabia (KSA), there is a growing need to better understand the experiences of home care providers who support persons with disabilities. This qualitative study aimed to explore the perceptions and experiences of home care providers in caring for individuals with developmental disorders and severe disabilities, to identify challenges associated with the demands of daily care, and to propose recommendations for service improvement. Semi-structured individual interviews were conducted with seven home care providers working in the private sector in Jeddah. Data were analysed using thematic analysis to elucidate participants’ experiences and perceptions. The findings yielded five main themes: (1) variability in diagnostic knowledge, particularly regarding developmental disorders and issues related to behaviour and communication; (2) the role of psychosocial support and respite care in sustaining caregiving; (3) the centrality of coordination, education, and training in building provider competence; (4) the burden and complexity of daily care, including activities of daily living and the management of assistive/medical devices; and (5) barriers to accessing services related to appointment availability, transportation, eligibility, and administrative procedures. The study recommends providing professional and family-oriented training in the field of disability and strengthening cross-sector research partnerships to enhance services for individuals with developmental disorders and severe disabilities.
References
Abulaiti, B., Zhang, X., Guan, T., Wang, M., Jia, S., & Wang, A. (2022). The dyadic care experiences of elderly individuals with disabilities and caregivers in the home setting from the perspective of family resilience: A qualitative study. Frontiers in Psychiatry, 13, 963101.
Al Ahmari, F. S., Alageel, A. F., Aldosari, M. A., & Bagha, M. Y. (2022). The quality of life of parents of children with Down syndrome in a tertiary care hospital in Saudi Arabia. Annals of Medicine and Surgery, 81, 104428. https://doi.org/10.1016/j.amsu.2022.104428
Alabbasi, K. H., Kruger, E., & Tennant, M. (2021). Long‑term implications of home healthcare management on mortality in older adults with functional difficulties in the Saudi community. Geriatrics, 6(4), 115. https://doi.org/10.3390/geriatrics6040115
Al‑Anazi, M., Al‑Surimi, K., & Abu‑Shaheen, A. (2020). Quality of home healthcare among Arab countries. Saudi Medical Journal, 41(7), 683–689. https://doi.org/10.15537/smj.2020.7.25119
Alenazi, D. S., Hammad, S. M., & Mohamed, A. E. (2020). Effect of autism on parental quality of life in Arar city, Saudi Arabia. Journal of Family & Community Medicine, 27(1), 15–22. https://doi.org/10.4103/jfcm.JFCM_157_19
Alhuzimi, T. (2021). Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder at home during the COVID‑19 pandemic in Saudi Arabia. Research in Developmental Disabilities, 108, 103822. https://doi.org/10.1016/j.ridd.2020.103822
Al‑Jabri, B. A., Abualhamael, R. M., Al Hazza, M. T., Bahabri, S. A., Alamri, Y. M., & Alghamdi, B. M. (2022). Quality of life of caregivers of autistic children in Saudi Arabia: A cross‑sectional study. Neurosciences (Riyadh), 27(3), 150–155. https://doi.org/10.17712/nsj.2022.3.20210141
Al‑Khashan, H., Mishriky, A., Selim, M., El‑Sheikh, A., & BinSaeed, A. A. (2011). Home caregivers’ satisfaction with the services provided by Riyadh Military Hospital’s home support program. Annals of Saudi Medicine, 31(6), 591–597. https://doi.org/10.4103/0256-4947.87095
Almehmadi, S., & Alrashed, A. M. (2023). The experience of informal caregiving within Saudi society: Expressed needs and expectations. Journal of the Egyptian Public Health Association, 98, 2. https://doi.org/10.1186/s42506-023-00130-y
Almulla, H., & Hassouneh, D. (2022). Home‑based palliative care and home health care in Saudi Arabia: An integrative literature review. Home Health Care Management & Practice, 34(4), 288–301. https://doi.org/10.1177/10848223221085684
Al‑Surimi, K., Al‑harbi, I., El‑Metwally, A., & Badri, M. (2019). Quality of life among home healthcare patients in Saudi Arabia: A household‑based survey. Health and Quality of Life Outcomes, 17, 21. https://doi.org/10.1186/s12955-019-1095-z
Authority for Persons with Disabilities (APD). (2022). Statistics—2022 census (persons with disabilities). https://apd.gov.sa/en/statistics
Bigby, C., Whiteside, M., & Douglas, J. (2019). Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services. Journal of Intellectual & Developmental Disability, 44(4), 396–409.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
Burgdorf, J. G., Wolff, J. L., Chase, J.‑A., & Arbaje, A. I. (2022). Barriers and facilitators to family caregiver training during home health care: A multisite qualitative analysis. Journal of the American Geriatrics Society.
Charles, M. L., Carpenter, L., & King, A. (2020). Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities—A qualitative study. Nursing Open, 7(6), 1808–1817.
Creswell, J. W. (2009). Research design: Qualitative, quantitative, and mixed methods approaches (3rd ed.). Sage.
DeJonckheere, M., & Vaughn, L. M. (2019). Semistructured interviewing in primary care research: A balance of relationship and rigour. Family Medicine and Community Health, 7(2), e000057. https://doi.org/10.1136/fmch-2018-000057
Denzin, N. K., & Lincoln, Y. S. (Eds.). (2011). The SAGE handbook of qualitative research (4th ed.). SAGE Publications.
Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134(2), e454–e463.
Ellenbecker, C. H., Samia, L., Cushman, M. J., & Hannan, M. T. (2008). Patient safety and quality in home health care. In R. G. Hughes (Ed.), Patient safety and quality: An evidence‑based handbook for nurses. Rockville, MD: Agency for Healthcare Research and Quality.
Ervin, D. A., Hennen, B., Merrick, J., & Morad, M. (2014). Healthcare for persons with intellectual and developmental disability in the community. Frontiers in Public Health, 2, 83.
Family Caregiver Alliance. (2016). Caregiver statistics: Demographics [Fact sheet]. San Francisco, CA.
Friedman, C. (2018). Direct support professionals and quality of life of people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56(4), 234–250.
Friedman, C. (2022). The impact of human service provider quality on the personal outcomes of people with intellectual and developmental disabilities. Frontiers in Rehabilitation Sciences, 2, 780168.
General Authority for Statistics (GASTAT). (2018, January 11). GASTAT: (2.9%) of Saudi population have disability with (extreme) difficulty. https://www.stats.gov.sa/en/news/29-saudi-population-have-disability-extreme-difficulty
General Authority for Statistics (GASTAT). (2019). Persons with disability survey 2017—Key findings. https://www.stats.gov.sa/
General Authority for Statistics (GASTAT). (2023a). تقرير إحصاءات الأشخاص ذوي الإعاقة 2023م [PDF]. https://www.stats.gov.sa/documents/d/guest/persons-with-disability-statistics-report-2023-ar-pdf
General Authority for Statistics (GASTAT). (2023b). نشرة إحصاءات الإعاقة لعام 2023م [PDF]. https://www.stats.gov.sa/documents/20117/1400941/Disability%2BStatistics%2BPublication%2B2023%2BAR.pdf
Global Research on Developmental Disabilities Collaborators. (2018). Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Global Health, 6(10), e1100–e1121.
Hedayioglu, J., Marsden, S., Sackree, A., & Oliver, D. (2022). Paid carers’ understanding and experiences of meaningful involvement in bereavement for people with intellectual disability when a significant other is dying. Journal of Applied Research in Intellectual Disabilities, 35(1), 143–149.
Hostyn, I., & Maes, B. (2007). Parents’ perspectives on grounds for out‑of‑home placement of young children with a disability. The British Journal of Developmental Disabilities, 53(105), 131–146. https://doi.org/10.1179/096979507799103423
Ilias, K., Cornish, K., Kummar, A. S., Park, M. S. A., & Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder in Southeast Asia: A systematic review. Frontiers in Psychology, 9, 280.
Keesler, J. M. (2018). Adverse childhood experiences among direct support professionals. Intellectual and Developmental Disabilities, 56(2), 119–132.
Kouther, D. A., Shakir, M. O., Alhumaidah, R. A., Jamaluddin, H. A., Jaha, A. Y., Alshumrani, M. J., & Hakami, A. Y. (2022). Factors influencing the mental health of caregivers of children with cerebral palsy. Frontiers in Pediatrics, 10, 920744. https://doi.org/10.3389/fped.2022.920744
Madi, S. M., Mandy, A., & Aranda, K. (2019). The perception of disability among mothers living with a child with cerebral palsy in Saudi Arabia: An ethnographic study. Global Qualitative Nursing Research, 6, 2333393619844096.
Maine Developmental Disabilities Council. (2011). Realities of living in Maine with a disability [Report]. Augusta, ME.
National Research Council. (2011a). Health care comes home: The human factors. Washington, DC: National Academies Press. https://doi.org/10.17226/13149
National Research Council. (2011b). People involved in health care in the home. In Health care comes home: The human factors (Chapter 2). Washington, DC: National Academies Press. https://doi.org/10.17226/13149
Office of the High Commissioner for Human Rights (OHCHR). (2017, October 27). General comment No. 5 (2017) on Article 19: The right to live independently and be included in the community (CRPD/C/GC/5).
Office of the High Commissioner for Human Rights (OHCHR). (n.d.). Background to the Convention.
Reckrey, J. M., et al. (2019). Beyond functional support: The range of health‑related tasks performed in the home by paid caregivers of older adults. Health Affairs, 38(6), 927–933.
Reinhard, S. C., Given, B., Petlick, N. H., & Bemis, A. (2008). Supporting family caregivers in providing care. In R. G. Hughes (Ed.), Patient safety and quality: An evidence‑based handbook for nurses. Rockville, MD: Agency for Healthcare Research and Quality.
Roth, D. L., Fredman, L., & Haley, W. E. (2015). Informal caregiving and its impact on health: A reappraisal from population‑based studies. The Gerontologist, 55(2), 309–319. https://doi.org/10.1093/geront/gnu177
Saudi Central Board for Accreditation of Healthcare Institutions (CBAHI). (2021). National standards for home healthcare service (1st ed.). https://istitlaa.ncc.gov.sa/ar/health/cbahi/homehealthcare/
Sharif, L., Basri, S., Alsahafi, F., Altaylouni, M., Albugumi, S., Banakhar, M., Mahsoon, A., Alasmee, N., & Wright, R. J. (2020). An exploration of family caregiver experiences of burden and coping while caring for people with mental disorders in Saudi Arabia: A qualitative study. International Journal of Environmental Research and Public Health, 17(17), 6405. https://doi.org/10.3390/ijerph17176405
Sulaimani, G. H., Kamel, H. H., Alotaibi, A., & Telmesani, A. M. (2023). Quality of life among family caregivers of disabled children in Saudi Arabia. Cureus, 15(7), e41320. https://doi.org/10.7759/cureus.41320
United Nations. (n.d.). Article 19 – Living independently and being included in the community (Convention on the Rights of Persons with Disabilities).
Virginia Commission on Youth. (2021). Collection of evidence‑based practices for children and adolescents with neurodevelopmental disorders. Richmond, VA.
Washington Group on Disability Statistics. (n.d.). WG Short Set on Functioning (WG‑SS). https://www.washingtongroup-disability.com/question-sets/wg-short-set-on-functioning-wg-ss/
Wang, R., & Liu, Q. (2022). Coping, social support, and family quality of life for caregivers of individuals with autism: Meta‑analytic structural equation modeling. Personality and Individual Differences, 186, 111351.
World Health Organization (WHO). (2002). Towards a common language for functioning, disability and health (ICF). Geneva: WHO.
World Health Organization (WHO). (2003). ICF Checklist, Version 2.1a (Clinician Form). Geneva: WHO.
World Health Organization (WHO). (2022). Global report on health equity for persons with disabilities. Geneva: WHO.
World Health Organization, & World Bank. (2011a). World report on disability. Geneva: WHO.
World Health Organization, & World Bank. (2011b). Assistance and support. In World report on disability. (NCBI Bookshelf
