Objectives: 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. Method: Data were collected using semi-structured interviews during the period 2009 to 2012 with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings: Findings indicate benefits as well as challenges. Most participants appraised their quality of life positively, despite the challenges they had to negotiate on a daily basis. They reported rewards and benefits from caregiving, more so in later life, such as: a connected family from shared caregiving; having a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care which improved their quality of life. The challenges that participants regularly encountered were: the added stress of the government’s Personalisation Agenda of caring services (particularly through direct payments); struggles for access to services; multiple losses (sleep, career, identity and friends); worry about future care; 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. Conclusion: The findings indicate that caregiving and quality of life are inextricably linked. The difficulties that parent carers 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 and how best these parents’ needs can be met. This study makes a specific contribution to understanding the phenomenological realities of older carers and extends current conceptualisations of quality of life among older people.

Background: People who are dying, caring for somebody who is dying, or have been bereaved can experience problems such as isolation, depression and anxiety. Some of these problems might be reduced if people were better prepared for death and were able to support one another when they were affected by death. There has been little previous research into how public health interventions might encourage these changes at a population level. This thesis aimed to explore this subject with a particular focus on talking to family and friends about end of life preparations and preferences. The research was embedded within the new and innovative Cheshire Living Well Dying Well (CLWDW) public health programme, which was established to address the issues described. Methods: Mixed methods were used. A quantitative follow-up survey was used to test a CLWDW intervention to encourage people to prepare for the end of their life and to discuss their end of life preferences with the people closest to them. A qualitative interview study was used to explore the wider context in which people talk with one another about issues relating to death and dying. Findings: The CLWDW interactive presentations delivered to community groups and to people working in health and social care were well received and effective in encouraging appropriate actions. Of respondents who completed follow-up at three months post-event (28% response rate), 60% reported that they had made a change or taken some action as a result of the event, including 43% who had talked with somebody about their own end of life wishes. In interviews, participants of all ages expressed the view that death, particularly bereavement, was a crucial issue and that it was important to prepare for and to talk about death and bereavement. Various barriers to talking about, preparing for and supporting people affected by death were described, as were various ideas to support improvement. Conclusions: Most people in the UK consider it important to be prepared for end of life and death, although many have not made these preparations. In the right circumstances, most are willing and able to talk openly about death and dying, including their own end of life preferences. Appropriate population-level interventions to encourage these behaviours can be well received and effective.