Informational needs of family caregivers Version 2

• Research type

  Research Study

• Full title

  Determining the informational needs of family caregivers of people with learning disabilities who require palliative care: A qualitative study

• IRAS ID

  197758

• Contact name

  Kevin Brazil

• Sponsor organisation

  Queen's University Belfast

• Duration of Study in the UK

  1 years, 7 months, 2 days

• Research summary

  As life expectancy increases so too will the risk of developing advanced, progressive diseases that require palliative care. Palliative care is care given by nurses, doctors, social workers and other professionals to people a disease which cannot be cured and is life-limiting. Palliative care is about making the last part of someone’s life as good as it can be and helps with all parts of their life- their physical needs (such as pain and sickness), emotional needs, social needs and spiritual needs.The population requiring palliative care includes people with learning disabilities who are often cared for by a family member. International research literature reports poor support of family caregivers and shows that caregiving in learning disability is a long continuum before end of life. These caregivers are thought to have a greater informational need, however there is little research to evidence this.
  The research aims to explore the informational needs of family caregivers of people with learning disabilities who require palliative care.
  This qualitative exploratory study will involve interviews with family caregivers, and focus group discussions with Health and Social Care Professionals. Data collected will be audio recorded, written word for word and analysed for themes by the primary researcher (laurie mckibben). An expert reference group made up of family caregivers, representatives of advocacy groups, health and social care professionals and policy makers will be involved to help develop a model of supportive care as a visual representation of the information needs reported and how they can be addressed. This technique uses the Experience Based Co Design (EBCD) approach (NHS, 2009)to actively involve service users in the model design. Findings and recommendations will add to existing knowledge, inform policy, provide an evidence base for further research and help improve health services and future priorities.

• REC name

  HSC REC A

• REC reference

  16/NI/0111

• Date of REC Opinion

  30 Jun 2016

• REC opinion

  Favourable Opinion