A qualitative study protocol of ageing carers’ caregiving experiences and their planning for continuation of care for their immediate family members with intellectual disability
Tóm tắt
Understanding the difficulties and needs of the family carers in taking care of a person with ID can facilitate the development of appropriate intervention programmes and services to strengthen their caring capacity and empower them to continue with their caring roles. This study aims to explore ageing family carers’ caregiving experiences and the plans they have to provide care for themselves and their ageing children with mild or moderate intellectual disability (ID). A constructivist grounded theory will be used to interview around 60 carers who have a family member with mild or moderate ID and attending sheltered workshops in Hong Kong. Constant comparative analysis methods will be used for data analysis. The theory will capture family caregiving experiences and the processes of carers in addressing caregiving needs, support received and plans to continue to provide care for themselves and their relatives with ID in their later life. New insights into the emerging issues, needs and plights of family caregivers will be provided to inform the policies and practices of improving the preparation for the ageing process of the persons with ID, and to better support the ageing carers. The theoretical framework that will be generated will be highly practical and useful in generating knowledge about factors that influence the caregiving processes; and, tracking the caregiving journey at different time-points to clearly delineate areas to implement practice changes. In this way, the theoretical framework will be highly useful in guiding timely and appropriate interventions to target at the actual needs of family carers as they themselves are ageing and will need to continue to take care of their family members with ID in the community.
Tài liệu tham khảo
Innes A, McCabe L, Watchman K. Caring for older people with an intellectual disability: a systematic review. Maturitas. 2012;72:286–95.
Low LPL, Fan KP. Discharging older patients from convalescent hospitals: Information needs of family members to inform the development of eLIP. Proceedings of the 40th Annual Conference of British Society of Gerontology; 2011. p.203.
Low LPL, Wong MH, Ling CF, Fan KP. Up against a challenge of providing pre-discharge resources for family carers of older patients: The process of developing a user-friendly eLIP website. Proceedings of the 21st Nordic Congress of Gerontology; 2012. p.127.
Low LPL, Lam LW. Making everyday decisions in residential care homes: Decision-making potential and challenges faced by family members of elders with mild to moderate dementia. Proceedings of the 16th Asia Pacific Regional Conference of Alzheimer’s Disease International; 2013. p.24
Low LPL. Accessing information before the point of need - A CADENZA initiative to digitalize pre-discharge planning for older patients and their family members. Proceedings of the 20th IAGG World Congress of Gerontology and Geriatrics, 2013. p.240.
Reinhard SC, Given B, Petlick NH, Bemis A. Supporting family caregivers in providing care. In: Hughes RG, editor. Patient safety and quality: an evidence-based handbook for nurses. Rockville: Agency for Healthcare Research and Quality; 2008. p. 1–64.
World Health Organization. Ageing and intellectual disabilities – improving longevity and promoting healthy ageing: summative report. Geneva, Switzerland: World Health Organization; 2000.
World Health Organization. European declaration on the health of children and young people with intellectual disabilities and their families. Bucharest, Romania: World Health Organization Regional Office for Europe; 2010.
Mckenzie K, Milton M, Smith G, Ouellette-Kuntz H. Systematic review of the prevalence and incidence of intellectual disabilities: current trends and issues. Current Developmental Disorders Reports. 2016;3:104–15.
Jeevanandam L. Perspectives of intellectual disability in Asia: epidemiology, policy and services for children and adults. Current Opinion in Psychiatry. 2009;22:462–8.
Census & Statistics Department. Special topics report no. 48. Persons with disabilities and chronic diseases. Hong Kong: General Household Survey Section Department; 2008.
Census & Statistics Department. Special topics report no. 62. Persons with disabilities and chronic diseases. Hong Kong: General Household Survey Section Department; 2014.
Ngo J. Huge study on disabled revealed as government accused of ignoring ageing problems. Hong Kong: South China Morning Post; 2015. http://www.scmp.com/news/hong-kong/article/1688562/huge-study-disabled-revealed-government-accused-ignoring-ageing
Hong Kong Government. Ageing of persons with intellectual disabilities. LC Paper No. CB(2)493/13–14(01); 2013. http://www.legco.gov.hk/yr13-14/english/panels/ltcp/papers/ltcp1216cb2-493-1-e.pdf
Mak WWS, Ho SMG. Caregiving perceptions of Chinese mothers of children with intellectual disability in Hong Kong. J Appl Res Intellect Disabil. 2007;20:145–56.
Lin LYA. Parents of children with severe intellectual disabilities in Hong Kong: relationship among their perceived stress, coping strategies and subjective quality of life. Hong Kong: Master of Science Dissertation, Department of Rehabilitation Sciences, Hong Kong Polytechnic University; 2009.
Lam LW, Mackenzie AE. Coping with a child with down syndrome: the experiences of mothers in Hong Kong. Qual Health Res. 2002;12:223–37.
Kwok SYCL, Leung CLK, Wong DFK. Marital satisfaction of Chinese mothers of children with autism and intellectual disabilities in Hong Kong. J Intellect Disabil Res. 2014;58:1156–71.
Bai X, Ho DW, Fung K, Tang L, He M, Young KW, Ho F, Kwok T. Effectiveness of a life story work program on older adults with intellectual disabilities. Clinical Intervention Aging. 2014;9:1865–72.
Li EP. Vocational aspirations of sheltered workshop workers with intellectual disability in Hong Kong. Journal of Intellectual Disability. 1998;42:208–17.
Li PYE, Tam SFA, Man WKD. Exploring the self-concepts of persons with intellectual disabilities. J Intellect Disabil. 2006;10:19–34.
Li WO, Fan TW, Yu CKC. Difficulty and burden experienced by principal family caregivers of people with intellectual disabilities in Hong Kong. Asia Pacific Journal of Counselling and Psychotherapy. 2012;3:95–105.
Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: Sage; 2006.
Schwartz SH. A theory of cultural values and some implications for work. Applied Psychology: An International Review. 1999;48:23–47.
Guba EG, Lincoln YS. Paradigmatic controversies, contradictions and emerging confluences. In: Denzin NK, Lincoln YS, editors. Handbook of qualitative research. Thousand Oaks: Sage; 2005. p. 191–215.
Hong Kong Social Welfare Department. Services for mentally handicapped persons; 2015. http://www.swd.gov.hk/doc/rehab/SW_Eng_072014.pdf
Polit DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 10th ed. Wolters Kluwer: Lippincott Williams Wilkins; 2017.