Abstract: This thesis reports on a research project which explored the phenomenon of supporting a family member with an intellectual disability who is dying in a community setting. The research purpose was to enhance professional understanding of what it is like to encounter this lived experience. Literature back-grounding the phenomenon and philosophical and theoretical constructs embraced by the researcher are outlined. An explanation is given of the hermeneutic phenomenological methodology which was utilised. The main method of collecting research data was through conducting five open-ended interviews with participants who had supported a dying child or sibling. The participants' family members were aged between 3 and 52 years old at the time of their deaths. Their specific intellectual disabilities included Down syndrome, a metabolically induced disorder and a non-identified syndrome. The family members had died from a variety of terminal illnesses and in a range of community settings. Interpretive analysis was achieved through reflexive journaling and hermeneutic intuiting of interview transcripts and field notes. The research findings have been subjected to rhetorical consideration in the light of further literature and poetic texts. Research findings are expressed metaphorically as groups of boulders representing themes and sub-themes. Three major themes were revealed as having impacted on the river voyage shared by participants and their dying family members. These were Interlocked Companionship, Search for New Balance and Permeable Interaction. An assessment is offered of the strengths and weaknesses of the research project. The thesis concludes with recommendations for reflective practice, evidence based practice, service development and areas of future research.

Abstract: This research undertaken by a nurse working with bereaved families, aimed to explore how grandparents, parents and health/bereavement professionals constructed grandparent bereavement when an infant grandchild died unexpectedly. The 26 participants, living in New Zealand and the United Kingdom, included 16 grandparents and 6 parents from 11 families, in addition to three health/bereavement professionals. A constructivist inquiry informed by writings on nursing, storying and postmodernism was used. Through an exploration of the methodological and ethical issues that arose and were addressed during the study, this work adds to knowledge of how constructivist inquiry can be used in nursing and bereavement research. In addition, the context of this research as a partnership with multiple family members contributes to the ongoing debate about whether participation in bereavement research may be harmful or therapeutic. Conversations in this research formed a series of interviews and letters, which led to the development of a joint construction and each individual's story. A grandchild's death was constructed as a challenge which grandparents faced, responded to and then managed the changes that arose from the challenge. The context of their bereavement was seen as underpinned by their relationship as “parents of the adult parents” of the grandchild who died. This meant that grandparents placed their own pain second to their wish to support and “be with” the parents. Outside the family was where many grandparents found friends, colleagues or their community forgot, or chose not to acknowledge, their bereavement. This work shows how some grandparents help to create a space within the family which maintains a continuing relationship with the grandchild who died.

Abstract: This study explores the phenomenon of the relationships between practitioners and families who have a child with a chronic illness. Using a heremeneutic phenomenological method informed by the writings of Martin Heidegger [1889-1976] and Hans-Georg Gadamer [1900-2002], this study provides an understanding of the meaning of 'being in relationship' from the perspective of both families and practitioners. Study participants include ten family groups who have a child with a chronic illness and twelve practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy who work with children with chronic illness. Narrative audio-taped interviewing was the means by which the participants told their stories about times that relationships worked well and when they did not. These stories uncover the every day realities of 'being in relationship' and provide another understanding of the relationship between family and practitioner.The findings of this thesis suggest that chronic childhood illness 'throws' families and practitioners together into a web of relationships that must work for the sake of the child. The relationship is primarily conducted between adults. Children are usually excluded. In order to understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential to the chronic illness journey, relationships are more successful when practitioners recognise the uniqueness of each family web. The nature of the relationship is often simple, yet it co-exists with complexity. This thesis proposes that a 'companion relationship' between practitioners and family may offer a more effective and satisfying way of working. It also challenges practitioners to consider the voice of children within health care relationships.