Futures planning, parental expectation and sibling concern for people who have a learning disability

Davys, D; Mitchell, D; Haigh, C

Abstract

Background
People who have a learning disability are living longer than previously and many have profound and severe disabilities. This group of people often live with parents and even when they move away from the parental home, responsibility often remains within the family. Siblings are commonly viewed as next of kin when older parents die or are no longer able to provide previous levels of support.
Methods
A questionnaire to explore the existence of future plans, parental expectation and adult sibling concern regarding people who have a learning disability was sent via email. Responses were anaylsed using descriptive statistics and thematic analysis.
Results
A full discussion regarding sibling support took place for 12 (57%) of respondents, 7 (33%) stated this discussion had not taken place and 2 (9%) were unsure. 12 (57%) of participants reported no clear future plan however where a plan did exist, 7 (33%) of respondents claimed it was agreeable to both them and their parents. 11 (52%) of respondents reported no difference between their wishes regarding future care and parental wishes. Key themes generated were; satisfaction with services, parental influence, sibling concern about the future, futures planning, the impact of the disabled person upon sibling lives and siblings needs.
Conclusions
The results present a lack of clarity between parents and siblings regarding futures plans, yet siblings are concerned about the impact of care for the future. There is diversity in sibling experience related to perception of services , the degree and openness of parental expectation of sibling involvement in future care. Siblings raise their need for a “voice” and access to a better quality and range of services.

Citation

Davys, D., Mitchell, D., & Haigh, C. (2010, December). Futures planning, parental expectation and sibling concern for people who have a learning disability. Poster presented at Seattle Club Learning Disability Research Conference, Llandudno, Wales

• Presentation Conference Type: Poster
• Conference Name: Seattle Club Learning Disability Research Conference
• Conference Location: Llandudno, Wales
• Start Date: Dec 5, 2010
• End Date: Dec 6, 2010
• Deposit Date: Feb 15, 2012
• Publicly Available Date: Feb 15, 2012
• Additional Information: Event Type : Conference