Developing high quality end-of-life care in nursing homes: an action research study

This thesis provides an account of an action research study undertaken to develop staff knowledge concerning high quality end-of-life care for older people resident in nursing homes. Two independent nursing homes (NH1, NH2a & NH2b) volunteered to take part. In each nursing home, an exploratory phase was undertaken using focus groups, interviews, participant observation, and documentary analysis. This exploratory work confirmed specific contextual and clinical issues related to end-of-life care and highlighted that dying was peripheral to the nursing home culture where the emphasis was on functional rehabilitation. In each home, an initiative, inductively derived from discussion with staff and based on the exploratory phase, was devised and implemented. In the first nursing home, the initiative entailed development of'collaborative learning groups' (CLGs) which took place following the death of a resident; in the second home, the adaptation and introduction of an 'integrated care pathway (ICP) for the last days of life' to be used prior to the death of a resident, provided a system around which high quality end-of-life care could be promoted. Both actions were evaluated. These initiatives enabled a greater openness towards death and dying in both nursing homes.A model for developing practice is presented combining these two inductively derived initiatives that acknowledge the importance of both the lifeworld of staff in their care of dying residents and their families and the nursing home system. This model, and the process of undertaking the action research, is discussed in relation to Habermas's Theory of Communicative Action - a substantive theory of 'system' and 'lifeworld'. Implementing the ICP as an integral part of a system for end-of-life care within the rehabilitative culture of nursing homes, and facilitating learning through a CLG after a resident dies, both (and importantly, together) encourage the development of staff knowledge and their support of each other in their care of dying residents. Previous research studies in this area of care have, in the main, only described the quality of endof-life care in nursing homes; a few studies have tried to influence such care through education and clinical involvement. This study makes a contribution to knowledge on the basis of it being an action research study in two nursing homes focused on the process of trying to change a functionally orientated rehabilitative culture to one that is more open to staff needs in the delivery of high quality end-of-life care. Findings of the study are discussed in relation to wider political and development issues; namely, the responsibility that nursing homes now have in the end-of-life care of older people; the importance of greater openness by management of nursing homes in their recognition of death and dying as an integral part of the culture and their subsequent support of staff; the unique role that nurses in nursing homes have to promote quality end-of-life care; and the need for targeted practice development initiatives within nursing homes to encourage better knowledge of symptom control and end-of-life issues that are specific to the care of older people dying in nursing homes

A qualitative study of family caregivers’ coping strategies of looking after people with dementia in China

BACKGROUND AND AIMS: Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers’ coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers’ coping strategies in China. The aim of this study was to explore the family caregivers’ coping strategies when caring for people with dementia in one city in the province of Shandong, China. METHODS: Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. RESULTS: Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. CONCLUSION: The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population

Online Supportive Conversations and Reflection Sessions (OSCaRS): A Feasibility Pilot with Care Home Staff during the Pandemic

Care homes care for people with complex needs, supporting them to the end of life and are now being seen as the ‘de facto’ hospice. Reflective debriefing for care home staff has been found to help support staff and provide an educative and communicative function when a resident dies. Pre-COVID-19, one of the authors had been conducting reflective debriefings face-to-face with care home staff but when COVID-19 struck, face-to-face sessions were impossible. An online format was developed with the aim of providing emotional support and practice-based learning in relation to death and dying through reflection. This study assessed the acceptability and feasibility of delivering online supportive conversations and reflective sessions (OSCaRS) on palliative and end of life care to care home staff during the pandemic. A mixed methods study design was undertaken in April to September 2020. Qualitative data comprised of digital recordings of sessions and semi-structured interviews with OSCaRS participants, managers and session facilitators. An online survey was sent to all staff and had a response rate of 12%.  Eleven OSCaRS were conducted over ten weeks. Thirty-four staff members attended one or more sessions. Three overarching themes were identified from the data: pressures of working in a pandemic, practicalities of delivering online support and, practice development opportunities. Engaging care home staff in online structured supportive conversations and reflections in relation to death and dying is acceptable, feasible and valuable for providing support with the pressures of working in a pandemic.  There is value for OSCaRS to continue as online sessions as they provide care home staff access to practice-based learning and support from professionals and allows specialists based in a range of settings to in-reach into care homes in an efficient way. Future implementation must consider the availability of sufficient devices with cameras to aid participation, timing and frequency of sessions to accommodate staff workflows, the engagement and support of managers and post-session support.