Everything changes : the liminalities of community based palliative care

Introduction: The inspiration for this PhD research developed out of previous research about women with cancer enrolled in the hospice programme. However, not all patients diagnosed with a life threatening illness enrol in a hospice programme and this was something I intended to explore further. In particular, I wondered if the narratives of people who were not enrolled in the hospice programme might yield insights about existing barriers to access to services that would be useful for their caregivers. The aim of the research was to • gather the narratives of people dying in the community with respiratory disease, renal disease, cardiac disease, neurological disease and cancer; • gather the narratives of people caring for them, both formal health professionals and informal carers; • identify barriers to the provision of palliative care for specific populations; • use a phenomenological approach to describe how people experienced their life world while receiving palliative care in the community. As the research evolved, the focus changed to explore the experiences of people as they transitioned from person to patient as their disease progressed, using the anthropological concept of liminality as a way of explaining this. Methodology: A qualitative approach was considered to be the most appropriate as the research aimed to explore the ways in which people diagnosed with life limiting conditions managed their life world. This included their close and extended family, work, activities, spirituality, health and home. Discussion: Participants were initially enrolled through hospital based specialists from five specialties- Cancer, Neuroscience, Renal, Cardiac and Respiratory. Because of difficulties with recruitment, something not uncommon in palliative care research according to the literature, enrolment was expanded to general practitioners who identified suitable participants from their practices in the community. Including patients from non-malignant life threatening conditions provided an opportunity to identify areas of need in these people and their families. Non-malignant disease makes similar demands on patients, families and general practitioners yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. One of the surprising things in this study was the number. of caregivers, usually spouses, who also had life limiting conditions thus increasing the level of burden experienced not only by them, but also their families. Conclusion: The need for palliative care services for people with non-malignant conditions is well recognised in the literature. This research identified barriers and needs of individuals and their families with non-malignant conditions in comparison with those with malignant conditions. Understanding the burden families experience and how they rely on health professionals to assist them to cross the liminal space between person to patient will assist in developing collaborative ways of working to provide palliative care for these individuals and their families

Everything changes : the liminalities of community based palliative care

Introduction: The inspiration for this PhD research developed out of previous research about women with cancer enrolled in the hospice programme. However, not all patients diagnosed with a life threatening illness enrol in a hospice programme and this was something I intended to explore further. In particular, I wondered if the narratives of people who were not enrolled in the hospice programme might yield insights about existing barriers to access to services that would be useful for their caregivers. The aim of the research was to • gather the narratives of people dying in the community with respiratory disease, renal disease, cardiac disease, neurological disease and cancer; • gather the narratives of people caring for them, both formal health professionals and informal carers; • identify barriers to the provision of palliative care for specific populations; • use a phenomenological approach to describe how people experienced their life world while receiving palliative care in the community. As the research evolved, the focus changed to explore the experiences of people as they transitioned from person to patient as their disease progressed, using the anthropological concept of liminality as a way of explaining this. Methodology: A qualitative approach was considered to be the most appropriate as the research aimed to explore the ways in which people diagnosed with life limiting conditions managed their life world. This included their close and extended family, work, activities, spirituality, health and home. Discussion: Participants were initially enrolled through hospital based specialists from five specialties- Cancer, Neuroscience, Renal, Cardiac and Respiratory. Because of difficulties with recruitment, something not uncommon in palliative care research according to the literature, enrolment was expanded to general practitioners who identified suitable participants from their practices in the community. Including patients from non-malignant life threatening conditions provided an opportunity to identify areas of need in these people and their families. Non-malignant disease makes similar demands on patients, families and general practitioners yet malignant disease is more likely to have the terminal phase identified so that people can access palliative care services. One of the surprising things in this study was the number. of caregivers, usually spouses, who also had life limiting conditions thus increasing the level of burden experienced not only by them, but also their families. Conclusion: The need for palliative care services for people with non-malignant conditions is well recognised in the literature. This research identified barriers and needs of individuals and their families with non-malignant conditions in comparison with those with malignant conditions. Understanding the burden families experience and how they rely on health professionals to assist them to cross the liminal space between person to patient will assist in developing collaborative ways of working to provide palliative care for these individuals and their families