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 qualitative thesis uses discourse analysis to examine parental resistance towards medical treatment of critically ill children. It is an investigation of the 'mobile and transitory' discourses at play in instances of resistance between parents, physicians and nurses within health care institutions, and an examination of the consequences of resistance through providing alternative ways of perceiving and therefore understanding these disagreements. The philosophical perspectives, methodology and methods used in this thesis are underpinned by selected ideas taken from the works of Michel Foucault and Pierre Bourdieu and supported by relevant literature in the fields of media, law, children, parenting, caring, serious childhood illness, medicine and nursing. It is argued that from an examination of interview based texts, parental resistance is an omnipresent but transitory occurrence that affects many of the interactions between the parents of seriously ill children and clinical staff. It is maintained that within these interactions, the seeds of this resistance are sown in both critical decision making situations and in everyday occurrences between doctors, nurses and parents within healthcare institutions. Contributing factors to parental resistance include the use of power games by staff, the language of medicine, forms of symbolic violence, the presence or absence of trust between parents and medical staff, the effects of medical habitus, and challenges to the parental role and identity. Overall, it is proposed in this thesis that parents who resist treatment for their seriously ill child are not exceptions to the normative patient-physician relationship.

Abstract: The Guthrie Test has become the standard screening test for early detection of congenital metabolic disorders for newborn babies in New Zealand and is an accepted part of neonatal care. In neonatal care, decisions are made on behalf of babies usually by their parents and, for the Guthrie Test there is a requirement that health professionals obtain informed consent. This qualitative research utilised focus group methodology to discover what neonatal nurses in clinical practice consider when obtaining informed consent from parents for newborn screening, the Guthrie Test. The convenience sample consisted of seven registered nurses who volunteered to participate in the study. They all practice in the Neonatal Intensive Care Unit at Dunedin Public Hospital that provides Level 3 intensive care to neonates in the Otago/Southland regions. There are proven benefits of the current newborn screening programme and in the experience of this focus group not many parents choose to refuse. These neonatal nurses identified the rights of parents to have that choice and to make an informed decision. The findings from this research indicate the importance neonatal nurses place on patients' rights and the information provided to ensure that their rights are respected. However, the results indicated that there is a need for clarification of the purpose and process of informed consent for the Guthrie Test in the Neonatal Intensive Care Unit. Therefore providing sufficient, relevant information at an appropriate time and manner is considered necessary. The findings will be used to inform discussion related to the provision of best practice.

Abstract: In 2004, Plunket nurses from eight areas around New Zealand participated in collecting data for a research project on health needs assessment practices. This project aimed to examine risk factors identified by Plunket nurses, what areas of health need considered to be priorities; grading of health needs; and how closely the results of health need assessment aligned with the individual clients' deprivation score. The researchers examine the assessment of health needs against the use of the Deprivation Index, which indicates a specific population in a specific area, as a funding model. This study appeared to show there are two distinct groups of clients assessed as high needs: those with risk factors such as family violence and severe parental mental illness, and who may live in an area of 1-7 deprivation; and those with multiple risk factors which include poverty, low education, and/or reluctance to access services and support, and who usually live in dep 8-10 areas. This research supports the anecdotal evidence that significant health needs exist outside the lower deprivation areas.

Abstract: Oral history accounts of the care of the hospitalised child in the context of family are used to argue that current practice paradoxes in family-centred care are historically ingrained. The article looks at the post-war period, the intervening years, and current practice, centred on the changing concept of motherhood throughout that time. The conflict between clinical expediency versus family and child needs is explored.

Abstract: This exploratory descriptive study informed by grounded theory examines the experience of mothers in managing their pre-school child's acute asthma attack at home. The study reveals that mothers perceive that they are responsible for the management of their pre-school child during an acute asthma episode, a process they described as 'managing it'. This process involves mother in 'working on treatment', 'making the call', 'watching' and 'calming', while the husband/partner, family, friends and health professionals are 'supporting treatment'. This study suggests that nurses and doctors need to move away from the current paternalistic view of health care delivery in acute settings and embrace the concepts of support and partnership in the care of the pre-school child with asthma and their family.