ABSTRACT The increase in life expectancy for adults with learning disabilities has extended the caring role for their parents. This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life. Data were collected using semi-structured interviews with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings indicate that most parents appraised their quality of life positively and reported benefits, despite the challenges they had to negotiate daily. The benefits from caregiving, more so in later life, were: a connected family from shared caregiving; a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care that improved their quality of life. The challenges that participants regularly encountered were: multiple losses (sleep, career, identity and friends); the added stress of the government’s Personalisation Agenda of caring services; struggles for access to services; searching for a diagnosis; worry about future care and fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities. Caregiving and quality of life are inextricably linked and the difficulties that parents experienced were mainly associated with socio-structural barriers, rather than their children’s disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life over time and how best these parents’ needs can be met. This study makes a specific contribution to understanding the lived realities of older carers and extends current conceptualisations of caregiving and quality of life among older people.

中文翻译：

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护理和生活质量

摘要学习障碍成年人的预期寿命增加，扩大了其父母的照料作用。这项研究调查了为有学习障碍的成年子女提供长期护理的大龄父母的经历，以及他们如何概念化生活质量。使用来自四个伦敦行政区的27位年长父母照顾者的半结构化访谈收集数据，并使用框架技术进行分析。调查结果表明，尽管父母每天都要面对各种挑战，但大多数父母还是对他们的生活质量进行了积极评价，并报告了自己的收益。在以后的生活中，照料带来的好处更多：共同照料带来的联系家庭；归属感; 有目的的生活；与成年子女互惠；从提供护理改善个人生活质量的个人转变。参与者经常遇到的挑战是：多重损失（睡眠，职业，身份和朋友）；政府对关怀服务的个性化议程的压力更大；为获得服务而斗争；寻找诊断；当照料者无法继续担任他们的角色时，担心将来的护理和担心被虐待；卫生和社会保健专业人员的无助态度；并且缺乏朋友和公众对学习障碍者的同情。照料和生活质量有着千丝万缕的联系，父母遇到的困难主要与社会结构障碍有关，而不是与子女的残疾有关。重要的，这些发现通过提供新的见解，说明照料如何随着时间的推移对生活质量产生影响，以及如何最好地满足这些父母的需求，从而为支持这一独特的照料者群体的社会工作者和其他人的做法提供了信息。这项研究为理解老年人护理者的生活状况做出了特殊贡献，并扩展了老年人护理和生活质量的最新概念。