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Family carers of people with intellectual disabilities in Ireland: changes over 10 years
- Authors:
- KELLY Caraíosa, McCONKEY Roy, CRAIG Sarah
- Journal article citation:
- Journal of Intellectual Disabilities, 25(2), 2021, pp.183-191.
- Publisher:
- Sage
- Place of publication:
- London
Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40–49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge. (Edited publisher abstract)
Retarded children and their siblings
- Authors:
- GATH A., GUMLEY D.
- Journal article citation:
- Journal of Child Psychology and Psychiatry, 28(5), 1987, pp.715-730.
- Publisher:
- Wiley
-
Parental Substitutes? The role of siblings in the lives of older people with intellectual disability
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Gerontological Social Work, 29(1), 1998, pp.3-21.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This Australian study examined the roles that siblings played in the lives of older people with intellectual disability and factors affecting this. Nearly half the sample had a sibling who acted as their primary carer after the death of the parents. However, in most cases this was not a permanent arrangement. In the long term a majority of older people did have a sibling who took responsibility for their well-being and played strong advocacy, mediator and supervisory roles. Fulfilment of such roles was associated with a lifelong close relationship between siblings.
Engaging with and navigating limbo: lived experiences of siblings of adults with autism spectrum disorders
- Authors:
- NOONAN Hester, O'DONOGHUE Isabelle, WILSON Charlotte
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(6), 2018, pp.144-1153.
- Publisher:
- Wiley
Background: Supporting an adult with autism spectrum disorder (ASD) can be associated with family stress but also with personal growth and resilience. Research providing insight into how typically developing siblings make sense of their unique sibling relationships in adulthood remains limited. Method: Using interpretative phenomenological analysis, this study explored subjective experiences of eight siblings of adults with ASD and co‐occurring intellectual disability. Results: Analysis of interview transcripts revealed a complex lived experience explained by the overarching theme “engaging with and navigating limbo”, which was characterized by commitment to the sibling relationship, power tensions in the family, uncertainty about the future and negotiating the tension between relational closeness and distance. Conclusion: Using family systems theory, overregulation and closed communication emerged as processes relevant to families living with ASD. Clinical opportunities to support family communication, change tolerance and belonging are discussed. (Publisher abstract)
“I love my sister, but sometimes I don't”: a qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities
- Authors:
- LUIJKX Jorien, PUTTEN Annette A.J. van der, VLASKAMP Carla
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(4), 2016, pp.279-288.
- Publisher:
- Taylor and Francis
Background: Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling’s quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having a sibling with PIMD. Method: Photo elicitation interviews were conducted with 18 children (6–13 years old) and thematically analysed using the following domains: joint activities, mutual understanding, private time, acceptance, forbearance, trust in wellbeing, exchanging experiences, social support, and dealing with the outside world. Results: Overall, the children described both positive and negative experiences, indicating that having a sibling with PIMD influenced their quality of life in multiple ways. Most mentioned were experiences classified in the joint activities domain. Conclusion: Having a sibling with PIMD influences the life of the interviewed children both positively and negatively. Both the opportunity for shared activities with the sibling with PIMD and moments of private time are important for sibling quality of life. (Publisher abstract)
Aging together: sibling carers of adults with intellectual and developmental disabilities
- Authors:
- COYLE Caitlin E., KRAMER John, MUTCHLER Jan E.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 11(4), 2014, pp.302-312.
- Publisher:
- Wiley
Family care provision is the norm for adults with intellectual and developmental disabilities, even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as ageing parents die or become too frail to provide continued support. This paper explores the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual ageing with intellectual and developmental disabilities . Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with intellectual and developmental disabilities (n = 15). Data were analysed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which ageing transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with intellectual and developmental disabilities. (Edited publisher abstract)
'I never thought I would have to do this’: narrative study with siblings-in-law who live together with a family member with a disability
- Authors:
- VANHOUTTEGHEM Inge, et al
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.315-322.
- Publisher:
- Wiley
Using narrative research, the authors have aimed to gain an insight into the perspectives of 14 siblings-in-law (living in the Flemish part of Belgium) about the decision to live together with a family member who has a learning disability. The decision to live together usually begins with a crisis. However, the decision process is a complex mechanism; it involves dynamics and events within a family (between family members both with and without blood relationships) and is intensified by experiences within a society that holds different views about families and disability. To develop a deeper understanding of this complex process the article considers interpretations based on the contextual framework of Boszormenyi-Nagy. (Edited publisher abstract)
Living with a brother or sister with special needs: a book for sibs
- Authors:
- MEYER Donald J., VADASY Patricia F., FEWELL Rebecca R
- Publication year:
- 1985
- Pagination:
- 110p., illus., bibliog.
- Place of publication:
- Seattle
Futures planning: adult sibling perspectives
- Authors:
- DAVYS Deborah, MITCHELL Duncan, HAIGH Carol
- Journal article citation:
- British Journal of Learning Disabilities, 43(3), 2015, pp.219-226.
- Publisher:
- Wiley
A total of 15 adult siblings of people who have a learning disability were interviewed in relation to their future wishes and expectations of care giving. Interpretative Phenomenological Analysis (IPA) was used to analyse transcripts from the interviews where it was demonstrated that futures planning remains an area of difficulty for families of learning disabled people. The range and degree of plans in place were variable across the families and overall, plans tended to lack detail and clarity. Various factors were cited as hindrances to the futures planning process such as parental anxiety, difficulty with service providers, superstition, attitude, assumption and life stage. Futures planning presented as a transitional process and further research into how best to support families and individuals who have a learning disability to develop long term yet flexible plans is indicated. (Publisher abstract)
Research - what's going on in Wales?
- Author:
- NASH Susie
- Journal article citation:
- Llais, 97, Autumn 2010, pp.14-15.
- Publisher:
- Learning Disability Wales
The Learning Disabilities, Autism and Neurodevelopmental research network (LDAN) is funded by the Welsh Office of Research and Development to attract funding to Wales for the benefit of people with learning disabilities, autism and neurodevelopmental disorders. This article describes two questionnaire studies on aspects of family life. The first study looked at fathers’ psychological well-being and examined whether fathers’ ‘acceptance’ was important in how their children’s behaviour problems affected them. Acceptance was defined as meaning taking what was offered without trying to avoid experiences, and has previously been shown to be beneficial to mothers. The questionnaire measured fathers’ acceptance of difficult emotions and thoughts in relation to their children, and also measured the children’s behaviour problems, fathers’ stress, anxiety and depression, and fathers’ positive well-being. The second study looked at the relationships between adults with a learning disability and their brothers or sisters. These relationships are important in terms of current well-being and also in relation to the involvement of brothers or sisters in the future care of their adult sibling with a learning disability. The study used an online questionnaire to measure the amount of warmth, conflict, and rivalry there was in the relationships.