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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.
Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability
- Authors:
- WALKER Ruth, HUTCHINSON Claire
- Journal article citation:
- Ageing and Society, 39(7), 2019, pp.1512-1527.
- Publisher:
- Cambridge University Press
The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds. (Edited publisher abstract)
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)
Emotional and tangible reciprocity in middle- and older-aged carers of adults with intellectual disabilities
- Authors:
- PERKINS Elizabeth A., HALEY William E.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(4), 2014, pp.334-344.
- Publisher:
- Wiley
This study investigates whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving. (Edited publisher abstract)
Experiences of families looking for housing for an adult relative with a learning disability
- Author:
- GREY Jill
- Journal article citation:
- Llais, 106, Spring 2013, pp.15-17.
- Publisher:
- Learning Disability Wales
Researchers at Bangor University funded by ESF, Mencap Cymru and Cartreifi Cymru have recently conducted research exploring the experiences of families across Wales who are looking for housing for their adult relative with a learning disabiilty. Parents spoke of their concerns about their own age which would prevent them from fulfilling their caring role. All of the parents involved found the process of looking for accommodation for their adult son or daughter to be time consuming and frustrating. Lack of appropriate housing was one barrier identified to individuals with learning disabilities being offered any real choice. At the end of the article the CEO of Cartrefi Cymru and the Director of Mencap Cymru provide some reflection on the current situation. (Original abstract)
Evaluation of the Older Carers Project delivered by Every-One (formally known as Lincolnshire Carers and Young Carers Partnership, LCYCP)
- Authors:
- DEVILLE Jane, DAVIES Helen, KANE Ros
- Publisher:
- University of Lincoln
- Publication year:
- 2016
- Pagination:
- 48
- Place of publication:
- Lincoln
An evaluation of project providing support for carers over the age of 55 with grown up children with learning disabilities to help them produce contingency and future care plans. The project aimed to ensure older carers were known to Lincolnshire County Councils and also that when the carers could no longer continue in their caring role, sufficient plans were in place to avoid a crisis where their son or daughter may be forced into residential care. The project was funded by Lincolnshire County Council, through the Better Care Fund, and delivered by Lincolnshire Carers and Young Carers Partnership. The evaluation interviewed 12 carers about the support they had received from the Project, the future planning they had undertaken and any benefits of the intervention. The evaluation found the Older Carers Project had been a successful in helping carers set up emergency and future plans. Participants highly valued the support they had received from project support workers, talked positively about the flexibility of the support, the role and knowledge of the project support workers and the delivery of the project by a third sector organisation. Participants also valued having a service aimed at themselves rather than their sons or daughters. In some cases the project had highlighted benefits, services and support that the carers did not know they were entitled to. Overall the preparation of plans enabled carers to feel more positive about the future for themselves and the future care their son or daughter may receive. (Edited publisher abstract)
Tolerating uncertainty: perceptions of the future for ageing parent carers and their adult children with intellectual disabilities
- Authors:
- PRYCE Laura, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(1), 2017, pp.84-96.
- Publisher:
- Wiley
Background: Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. Methods: Semi-structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an explanatory thematic framework. Results: ‘Tolerating uncertainty’ was the major theme in participants' attempts to manage anxieties about the future, encompassing sub-themes of ‘accepting the parenting role’, ‘facing challenges’, ‘being supported/isolated’, ‘positive meaning making’, ‘re-evaluating as time moves on’ and ‘managing future thinking’. Some participants expressed preferences for their future which were in contrast to their parents' views, and provide a unique perspective that has often been neglected in prior research. Conclusions: This research has found commonalities in how families tolerate the uncertainty of the future, but also unique differences that require tailored interventions and prospective action by services. (Publisher abstract)
Families' experiences of seeking out-of-home accommodation for their adult child with an intellectual disability
- Authors:
- GREY Jillian M., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 12(1), 2015, pp.47-57.
- Publisher:
- Wiley
Research exploring the experiences of families during the process of seeking out-of-home accommodation for an adult son or daughter with intellectual disability is scarce. A study was undertaken to examine this process. Nine families currently seeking out-of-home accommodation for their adult son or daughter were interviewed and interview data were analysed using thematic analysis. Two main themes were identified: (1) reasons for seeking housing and (2) experiences of seeking housing. Parents' ageing and increased health problems along with the offspring's wish for greater independence were the main reasons for seeking out-of home accommodation. Experiences of looking for a house were not straightforward in that parents often wanted to plan ahead but were prevented from doing so as the housing system prioritizes 'housing crises.' Findings showed that families experienced seeking housing as stressful and frustrating and would like to see social care and housing professionals acknowledge them as collaborative partners in the process. The authors conclude there also needs to be greater clarity of expectation of the duration of finding suitable accommodation, a process that needs to be started early in a young adult's life. (Publisher abstract)
People with learning difficulties and their ageing family carers
- Author:
- JOSEPH ROWNTREE FOUNDATION
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 1998
- Pagination:
- 4p.
- Place of publication:
- York
Despite the growth in independent living, most people with learning difficulties still live in the family home. As their life expectancy increases, a growing proportion will continue to live with very elderly family members, usually parents, and will survive them. Summarises the findings of a review of research, policy and practice on service provision for adults with learning difficulties living at home with older family carers and spoke with carers, users and staff.