Abstract
Increased life expectancy has given rise to a greater number of people at risk of developing advanced, progressive diseases that require palliative care. The population requiring palliative care will include people with learning disabilities, who are also living longer. People with learning disabilities are often cared for by a family member. International research literature reports inadequate support of family caregivers and demonstrates caregiving in learning disability is a long continuum before end of life. A wide scope of informational need is thought to exist for family caregivers of people with learning disabilities who require palliative care, however, there is a paucity of research to evidence their specific information needs. This study aimed to determine the informational needs of family caregivers of people with learning disabilities who require palliative care, with logic model development providing a visual representation of these needs and how they could be met. A qualitative, exploratory design was implemented. Semi-structured interviews were conducted with a purposive sample of family caregivers (n=10), and six focus groups were composed of purposefully sampled Health and Social Care professionals (n=28), from across the province of Northern Ireland. Following consultations with an expert advisory group, findings informed the co-design of a logic model reflecting the information needs reported and how family caregivers can be best supported in having their information needs met.Findings revealed four themes from family caregiver interviews: ‘Changing and diverse nature of information need’, ‘Consistent communication and joint working’, ‘Navigating care across settings’ and ‘Evolution and components of the caring role.’ Three themes evolved from focus groups with Health and Social Care professionals which were: ‘Information needs at the interface of services’, ‘Interplay of services across settings’ and ‘Decision making dilemmas.’ Family caregivers reported multiple information needs, which were changeable over the disease trajectory and remained into the bereavement period. Services played an integral role in enabling access to the right information at the right time. Conclusively the most reported information needs surrounded educational information on the disease and palliative care, and information relating to financial assistance. Other reported information needs applied to practical support and respite. Information needs surrounding psychosocial support were cited by some, however these were not considered a priority. Family caregivers of this population require consistency and continuity, with recommendations for co-ordinators or link staff, who can provide information on a personalised, one to one basis. An increased number of people with learning disabilities will be in receipt of services from primary care and acute services, due to their palliative diagnosis; this research shows a lack of preparedness and training amongst staff who appear to require more knowledge and skill to deal with this area of practice. This increases the strain on the family caregiver, and increases the level of information and support that they will require.
| Date of Award | Dec 2018 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Kevin Brazil (Supervisor), Doris McLaughlin (Supervisor) & Peter Hudson (Supervisor) |