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Fathers of adults who have a learning disability: roles, needs and concerns
- Authors:
- DAVYS Deborah, MITCHELL Duncan, MARTIN Rachel
- Journal article citation:
- British Journal of Learning Disabilities, 45(4), 2017, pp.266-273.
- Publisher:
- Wiley
Accessible summary: 1) This study asked fathers of adults who have a learning disability about their experiences, what helps them and any worries they may have; 2) Fathers reported different experiences of being a father to an adult with a learning disability and talked about things that were helpful, such as their wives, grandparents, having information and hobbies; 3) Fathers were worried about the person who has a learning disability in the future; 4) Fathers can be important in supporting people who have a learning disability throughout their lives. Background: There is little research that specifically relates to fathers of adults with a learning disability despite the social expectation that fathers will provide a supportive role over the lifespan. Methods: Semi-structured interviews were carried out with seven fathers of adults with a learning disability to explore their roles, needs and concerns. Data were analysed using a framework associated with interpretative phenomenological analysis (IPA). Results: Themes arising demonstrate that fathers were shocked at the diagnosis of learning disability but usually reported adaptation over time. The impact of learning disability upon men's lives, their perception of their adult child and the roles they assumed were varied. Fathers valued support from wives and grandparents, having knowledge and interests and work-type roles. All fathers were concerned about the future yet comprehensive futures planning was lacking. Some fathers reported difficulties in being emotionally open, and referred to societal stereotypes. Fathers valued positive support from service providers; however, this relationship was often in conflict. Conclusion: Although mothers are often the main carers for adults with a learning disability, fathers can make a significant contribution. The findings presented here support the results of previous studies regarding paternal response to learning disability and varied impact upon men's lives. Identified support strategies include leisure interests, volunteer/work roles, having information and support from wives and grandparents. Ongoing concerns incorporate the future and ambivalent relationships with service providers, which could have a negative impact upon the individual who has a learning disability. (Publisher abstract)
Futures planning, parental expectations and sibling concern for people who have a learning disability
- Authors:
- DAVYS Deborah, MITCHELL Duncan, HAIGH Carol
- Journal article citation:
- Journal of Intellectual Disabilities, 14(3), September 2010, pp.167-183.
- Publisher:
- Sage
- Place of publication:
- London
This study investigated adult siblings of people who have a learning disability. It examines demographics, future plans, parental expectations and concerns over future care. A questionnaire was e-mailed to 200 siblings on the Sibs database, of which 21 questionnaires were returned. A full discussion regarding sibling support was reported by 57% of respondents; 33% stated this discussion had not taken place, and 9% were unsure. Fifty seven percent of participants reported no clear future plan. Where a plan did exist, 33% of respondents suggested it was fully agreeable to both them and their parents. Fifty two percent of respondents reported no difference between their wishes regarding their future role and parental wishes. Analysis revealed three key themes: satisfaction with services, parental influence, sibling concern about the future, futures planning, the impact of the disabled person upon sibling lives, and siblings’ needs. The authors suggest that further qualitative research into issues for siblings of adults who have a learning disability is needed.
Adult siblings consider the future: emergent themes
- Authors:
- DAVYS Deborah, MITCHELL Duncan, HAIGH Carol
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(3), 2016, p.220–230.
- Publisher:
- Wiley
Background: This study aimed to explore the perceptions of adult siblings regarding a future care role and compare with perceived parental wishes as family often provide a key support role in the lives of people who have an intellectual disability. Materials and Method: Semi-structured interviews were undertaken with 15 adult siblings and an approach aligned to IPA was used to analyse the results. Results: Emergent themes demonstrated that intellectual disability has an impact upon sibling lives yet the degree and range of impact varies. Most participants were concerned about the future, service issues were raised as was futures planning, siblings' needs, the positive impact of intellectual disability and influence of life stage upon care giving. Conclusion: The findings highlight that whilst the impact of intellectual disability upon adult siblings is variable, siblings are concerned about the future, and that life stage and circumstance appear to influence care giving. (Publisher abstract)
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)