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Family carers managing personal budgets for adults with learning disabilities or autism
British Journal of Learning Disabilities ( IF 1.238 ) Pub Date : 2020-10-11 , DOI: 10.1111/bld.12348
Agnes Turnpenny 1 , Stacey Rand 2 , Beckie Whelton 1 , Julie Beadle‐Brown 1 , Jacinta Babaian 3
Affiliation  

1.1 Background: There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well‐being. 1.2 Methods: This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi‐structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. 1.3 Results: Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as “complex needs.” The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a “professional.” The fifth and final theme, mixed emotions, describes the impact on the subjective well‐being of carers. 1.4 Conclusions: Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self‐directed support and greater well‐being, and are sustainable arrangements.

中文翻译:

家庭护理人员为有学习障碍或自闭症的成年人管理个人预算

1.1 背景:在英格兰,越来越多的学习障碍和自闭症人士以直接付款的形式获得个人预算。虽然他们经常参与有关他们的支持的决定,但个人预算通常由其他人管理,通常是父母。本研究调查了为有学习障碍或自闭症的成年人管理个人预算的护理人员的经验,特别关注获得适当支持和对他们自身福祉的影响的挑战。1.2 方法:这是一项定性研究,使用描述性现象学方法来调查管理个人预算的家庭照顾者的生活经历。我们对 13 名家庭照顾者进行了半结构化访谈。使用框架方法对访谈记录进行了专题分析。1. 3 结果:我们的分析确定了五个主要主题。第一个主题与护理人员最初决定承担个人预算的原因以及他们最初的期望有关。第二个主题,有限的选择,突出了在通常被描述为“复杂需求”的背景下获得足够支持和服务的困难。第三个和第四个主题涉及管理个人预算所涉及的任务以及与作为父母和“专业人士”的照顾者双重角色相关的挑战。第五个也是最后一个主题,混合情绪,描述了对照顾者主观幸福感的影响。1.4 结论:家庭照顾者表示,个人预算的好处超过了管理它们所固有的困难和压力。
更新日期:2020-10-11
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