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Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day”
- Authors:
- DREYFUS Shoshana, DOWSE Leanne
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(1), 2020, pp.12-22.
- Publisher:
- Taylor and Francis
Background: Research into parents’ experiences of living with a family member with intellectual disability and challenging behaviour does not specifically address what parents say about themselves and their lives. This paper explores “I-statements” parents made about their day-to-day actions in life with their family member. Methods: Semi-structured interviews were conducted with 26 parents, of which 91% were mothers. “I-statements” were analysed using process analysis from systemic functional linguistics and thematic analysis. Results: “I-statements” showed that parents enacted a range of complex and sometimes extreme activities across a variety of life domains. Parents spoke about: managing relationships with services; educating themselves and others; seeking support; resisting poor service delivery; assisting others; and making both small and significant changes. Conclusion: The paper provided insights into the complex lives of these families and offered observations on the implications of the potential misalignment between the supports the data suggests are needed and those that, in reality, are available to them. (Edited publisher abstract)
Supporting children of parents with intellectual disability: a scoping review
- Authors:
- GUDKOVA Tatiana, HEDLUND Marianne, MIDJO Turid
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(4), 2019, pp.737-749.
- Publisher:
- Wiley
Background: Parents with intellectual disability live normal lives and have children, but many of them lose custody of their children. However, little is known about the support, if any, that these children receive. Here, the present authors review the literature on the help and support given to children of parents with intellectual disability. Method: A scoping review of peer‐reviewed and grey literature was conducted, covering 1997 to November 2017. Results: Thirteen publications were identified. The children benefited from help and support received through informal networks. They also benefited from formal support if it focused on the children's needs and interests. Conclusions: The review shows that even though support from informal networks might be an influential factor in supporting children, there is a need for more research addressing the formal support these children receive and how they benefit from it. (Edited publisher abstract)
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.
Support for families: helping children with learning disabilities
- Authors:
- BURKE Peter, CIGNO Katy
- Publisher:
- Avebury
- Publication year:
- 1996
- Pagination:
- 165p.,bibliog.
- Place of publication:
- Aldershot
Research study looking at what kind of support is currently used by families with a child with learning difficulties.
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)
Informal support and burden among parents of adults with intellectual and/or developmental disabilities
- Authors:
- ROBINSON Suzanne, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(4), 2016, p.356–365.
- Publisher:
- Wiley
Background: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. Results: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated. (Publisher abstract)
A time to care
- Author:
- HOLMSTROM Radhika
- Journal article citation:
- Care and Health Magazine, 38, 18.6.03, 2003, pp.18-19.
- Publisher:
- Care and Health
Despite government commitments to independent living 93% of children and 60% of adults with learning difficulties live with their parents. This article looks at how this can be changed.
Moving on without parents: planning, transitions and sources of support for middle-aged and older adults with intellectual disability
- Author:
- BIGBY Christine
- Publisher:
- MacLennan & Petty
- Publication year:
- 2000
- Pagination:
- 263p.,tables,bibliog.
- Place of publication:
- Sydney, NSW
Examines the nature and success of parental planning for the future care of adult children with intellectual disability. Begins by reviewing existing research on parental planning and sources of support for people with intellectual disabilities in later life; then details the results of a study of the transition from parental care and subsequent care experiences of people aged 55 or over. Examines the nature of parental plans, the process of transition from parental care and the long term success of parental plans. Explores, with case vignettes, the current situation of older people, their access to services and their sources of informal support. Concludes by examining policy and practice implications.
Parents of adults with intellectual disabilities: quality of life and experiences of caring
- Authors:
- WALDEN Sarah, PISTRANG Nancy, JOYCE Theresa
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 13(2), 2000, pp.62-76.
- Publisher:
- Wiley
This study examined a UK sample of parents caring for their adults offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the USA, or as well as adults in the general American population. The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post-parental life style was also associated with quality of life, with 'captive' parents facing more poorly than 'captivated' parents.
Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: a systematic review of qualitative studies
- Authors:
- WALKER Ruth, HUTCHINSON Claire
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(4), 2018, pp.453-462.
- Publisher:
- Taylor and Francis
Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process. (Publisher abstract)