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Keywords:

  • Barriers to futures planning;
  • futures planning;
  • parents and futures planning;
  • siblings and futures planning

Accessible summary

  • Planning for the future is important to the happiness and well-being of people who have a learning disability and their families.
  • Parents, brothers and sisters of people with learning disability worry about the future especially when parents are not able to give support.
  • Planning for the future can be difficult because families may not feel ready to plan. They may also feel frightened about the future and feel that they do not have enough information. Families worry about support, relationships and the needs of different family members.
  • Planning for the future can take a long time, and plans may need to change.

Summary

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.