Futures planning – adult sibling perspectives

Abstract

Summary15 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.

Future Planning Among Families of Individuals With Intellectual and Developmental Disabilities: A Systematic Review

“…Qualitative methods were used in 25 studies. While most studies did not specify their framework or paradigm, five studies employed the phenomenological method (Davys, Mitchell, & Haigh, ; Gauthier‐Boudreault, Couture, & Gallagher, ; Holl & Morano, ; Knox & Bigby, ; Walker & Hutchinson, ) and two studies conducted action research (Craig & Cartwright, ; Young et al, ). Most ( n = 18) studies included individual interviews.…”

Adult Siblings Consider the Future: Emergent Themes

“…This article will present only the results from Stage two. A previously published paper (Davys et al 2014) presents findings from the same sample that refer specifically to futures planning however this paper presents the findings from all nine superordinate themes that arose from the interviews.…”

The changing face of parent advocacy: a long view

“…For example, in the twenty-first, as in the twentieth and earlier centuries, families act as the first and last resort for care (Dumbleton 2013; Foundation for People with Learning Disabilities 2012; House of Lords and House of Commons Joint Committee on Human Rights 2008; Prosser 1997). One possible reason for this is that families describe a lack of confidence in current and future service provision, particularly what will happen when parents die (Bibby 2013;Davys, Mitchell, and Haigh 2014;Fitzroy 2015;Neary 2015a). Families also report problematic relationships with professionals, and difficulty in getting the family's knowledge of the person taken into account (Bibby 2013;Davys, Mitchell, and Haigh 2014;Jingree and Finlay 2012;Michael 2008;Ryan 2015a;Ryan and Runswick-Cole 2008).…”

“…One possible reason for this is that families describe a lack of confidence in current and future service provision, particularly what will happen when parents die (Bibby 2013;Davys, Mitchell, and Haigh 2014;Fitzroy 2015;Neary 2015a). Families also report problematic relationships with professionals, and difficulty in getting the family's knowledge of the person taken into account (Bibby 2013;Davys, Mitchell, and Haigh 2014;Jingree and Finlay 2012;Michael 2008;Ryan 2015a;Ryan and Runswick-Cole 2008). Lastly there is an enduring challenge of achieving a balance between autonomy and protection (Foley 2012;Ledger et al 2016;Tilley et al 2012) in which families are often considered risk averse.…”

“…Families do not trust the state to provide safe, consistent care for their relatives (Bibby 2013;Davys, Mitchell, and Haigh 2014;Neary 2015a). They have good reason to be suspicious.…”