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Ageing in place together: older parents and ageing offspring with intellectual disability
- Authors:
- CHOU Yueh-Ching, KROGER Teppo
- Journal article citation:
- Ageing and Society, 42(2), 2022, pp.480-494.
- Publisher:
- Cambridge University Press
Limited research has been conducted about ageing in place among older parents who co-habit with their ageing offspring with intellectual disability (ID). This study aims to explore which older parents would choose ageing in place together with their ageing offspring with ID instead of moving and what factors are associated with this choice. A face-to-face interview was conducted using the ‘housing pathways’ framework with older parents (⩾60 years) co-habiting with their ageing offspring with ID (⩾40 years) from two local authorities in Taiwan. In total, 237 families completed a census survey between June and September 2015. The results showed that 61.6 per cent of the participants would choose ageing in place with their ageing offspring with ID, while 38.4 per cent of the participants would stay in their previous place without their disabled children, move in with their other children or move to a nursing home. Logistic regression analyses revealed that parents who preferred ageing in place together with their offspring with ID were more likely to own a house (‘personal control’), have higher levels of life satisfaction (‘self-esteem’) and satisfaction with their current community (‘self-identity’), and have a lower level of social support than parents who chose another option. To meet the needs of older parents and their ageing offspring with ID, care and housing transitions should be considered as part of long-term care policy. (Edited publisher abstract)
Current and future concerns of older parents of sons and daughters with intellectual disabilities
- Authors:
- WEEKS Lori E., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 6(3), September 2009, pp.180-188.
- Publisher:
- Wiley
Using both qualitative and quantitative methods, the authors examined the concerns of older parent carers of their sons and daughters with learning disabilities in Prince Edward Island, Canada. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included "small option homes" and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.
Caring for a child with learning disabilities: over a prolonged period of time: an exploratory survey on the experiences and health of older parent carers living in Scotland
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.471-480.
- Publisher:
- Wiley
To examine the impacts of a lifetime of caring on older parents of offspring with learning disabilities an exploratory postal survey was completed by 100 older parent carers. The survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2). The reported survey is part of a larger mixed method study including in-depth interviews. The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. The findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals. (Edited publisher abstract)
The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- British Journal of Learning Disabilities, 41(1), 2013, pp.73-82.
- Publisher:
- Wiley
This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers aged between 65 and 89 years (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The article: (i) presents a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) aims to come to a more in-depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Participants responses are discussed under the following themes: a life not forseen; going it alone; reaching a decision; and nearing the end. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan. (Edited publisher abstract)
Where carers become the cared for
- Author:
- HOLMAN Andrew
- Journal article citation:
- Community Living, 23(4), 2010, pp.16-18.
- Publisher:
- Hexagon Publishing
Carers with learning disabilities are a hidden group within the population, and remain a largely neglected group. The article describes a campaign called ‘Who Cares for Us?' which is working with government and social services to make sure carers with learning disabilities are included in the new carers strategies. The Valuing People Now formed a National Network for Carers with Learning Disabilities, building on the work of 'Who Cares for Us'. The article acknowledges that more needs to be done, but ultimately supporting carers is an invaluable process, both for the community and the economy.
Older parents of people who have a learning disability: perceptions of future accommodation needs
- Author:
- DAVYS Deborah
- Journal article citation:
- British Journal of Learning Disabilities, 36(1), March 2008, pp.66-72.
- Publisher:
- Wiley
The aim of this qualitative study was to provide an insight into the perceptions of older parents of learning disabled people on the future accommodation needs of their adult children. Semi-structured interviews were used to seek parental awareness of residential options available, concerns in relation to future accommodation and the preferred accommodation options for their offspring. Four couples who shared the family home with an adult who has a learning disability took part in the study and data were analysed using a step-by-step form of content analysis. Emergent themes from transcripts were then organized into main categories. The results of this study suggest that older parents are dissatisfied with both statutory and private services, that they have concerns for their nondisabled children and their own ageing. Being a parent to a person who has a learning disability is seen to be a difficult task and yet parents may want to provide support at home for as long a possible. Of the parents who participated in this study, three couples wanted to maintain their adult child at home for as long as possible and the parents who were actively seeking accommodation outside the family home expected to be involved in all aspects of their daughter's care for the long-term future.
The test of time
- Author:
- GEORGE Mike
- Journal article citation:
- Care and Health Magazine, 38, 18.6.03, 2003, pp.16-18.
- Publisher:
- Care and Health
A fifth of adults with learning difficulties live with elderly parent. This article looks at how well the social care sector is serving this population of carers.
Later life for adults with intellectual disability: a time of opportunity and vulnerability
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 22(2), June 1997, pp.97-108.
- Publisher:
- Taylor and Francis
Old age is often regarded as a time of reduced functional capacities, decreasing community participation and narrowing horizons. Such views are sometimes reflected in the nature of programmes and services, and the more limited expectations that service providers hold about people. This article reports on the findings of a qualitative study of the later life experiences of older people (over 55 years) with intellectual disability. Conclusions are drawn about the ways in which later life opportunities can be safeguarded and vulnerabilities reduced through the development of appropriate policies and services for older people with intellectual disability.
Aging parents of adult children with mental retardation: is age a factor in their perception of burdens or gratifications?
- Authors:
- MCDERMOTT Suzanne, et al
- Journal article citation:
- Journal of Gerontological Social Work, 27(1/2), 1996, pp.133-148.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This article describes a study of ageing parents of adult children with learning difficulties. The challenges faced by ageing parents are discussed from the perspective of life-span developmental psychology. Examines whether there are differences based on age of parent in caregiver burdens and caregiver gratifications. No significant differences on the basis of age were found and analyses of the results suggest that age of parent may be less helpful in understanding the experiences of life-long caregiving than family context and history. Recommendations for practice and policy are discussed.
Older carers, interdependence and the care of mentally handicapped adults
- Author:
- GRANT G.
- Journal article citation:
- Ageing and Society, 6(3), 1986, pp.333-351.
- Publisher:
- Cambridge University Press
Presents the results of a survey and its implications for policy and practice.