Evaluation of the ‘Better Futures Project’: Supporting older carers of people with learning disability to care for now and plan for the future

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Abstract

BackgroundWithin Northern Ireland, there are no community-based services that have specifically targeted the needs of older family carers of people with a learning disability. In 2011 Positive Futures produced “The Careful Plans Report” which focused on the needs of older family carers of people with a learning disability and identified a number of key recommendations as to how these needs could be met. In response to these recommendations, Positive Futures was successful in obtaining a grant from the Big Lottery ‘Reaching Out, Connecting Older People Fund’ to develop the ‘Better Futures Project’; this was a 3 year Project which was extended by a further 1 year following receipt of additional funding from the Big Lottery. AimsThere were 2 key aims of the ‘Better Futures Project’: 1. To develop and evaluate a range of support options designed to meet the needs of older family carers of people with a learning disability and2. To enable older family carers to have the capacity to create emergency and future plans with their extended family and to share these with the South Eastern Health and Social Care Trust.How we undertook the studyIn total the ‘Better Futures Project’ provided direct support and interventions to 81 family units composed of 115 carers who cared for 88 dependent adults with disabilities (203 people in total). All family carers were offered the opportunity to engage in a formal evaluation of the ‘Better Futures Project’ conducted by Ulster University. There were 2 parts to this evaluation. Stage 1 involved the family carers completing 3 standardized questionnaires about their psychological distress (GHQ-28), their caring difficulties / stresses (CADI) and how they managed / coped with caring (CAMI) prior to the commencement of the Project (Baseline / Time 1) and approximately 12-24 months follow up (Time 2). Of the 81 families who took part in the Project, 64 family carers consented to complete the questionnaires prior to commencing the Project (a 79% response rate) and 42 family carers completed the questionnaires at time 2 (a response rate of 65%). In addition, a series of focus groups were held with a representative sample of family carers from years 1, 2 and 3 of the Project, as well as focus groups and face-to-face interviews that were conducted with Positive Futures and Trust staff. Only 42 family carers completed the questionnaires at time 2: a response rate of 65%. Many similar studies with older family carers reported difficulties in identifying, recruiting and engaging with older family carers of adults with a learning disability and evaluation is no different. There were a number of demands and pressures ongoing with families (such as ill-health, family crises and exhaustion from the demands of the caring role). This meant that taking time to complete the questionnaire and attend focus groups could not be prioritized which meant that some of these family carers could no longer participate in the research element of the evaluation. It must also be recognized that the majority of the research activity took place during the day when many of those being cared for were in day services meaning that the carers were getting a much needed break from caring. Results Stage 1: The family carers' problem solving skills on the CAMI were found to significantly increase from Time 1 (41.3) to Time 2 (46.2) (p
Original languageEnglish
PublisherUlster University
Number of pages48
Publication statusPublished - 23 Jun 2016

Keywords

  • intellectual disability
  • ageing family carers
  • support models

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