Abstract: A 50 point research project presented in partial fulfilment of the requirements for the degree of Master of Nursing at Massey University.

Abstract: When a child lives with a life-threatening illness there is a range of emotions that affect the child, family and people close to the child. This study utilises a narrative approach to explore what the child puts emphasis on in what is important to them as they live with serious illness. The study incorporates the nurse as narrator with the 'narratives' of the children integrated into her reflections to gain a broader understanding. The focus is on listening intently to the spoken needs of children, their story and the meaning they make of their situation when they live with their illness. 'Children' in this study are between the ages of six years to 15 years. The aim of this research is to provide a clear understanding of the lived experience, which may illuminate the needs of the child and what is required throughout the time of illness; therefore informing health professionals of a culture of care that may support these needs. A broader understanding and deeper insight into the complexity of children living with life-threatening illnesses provides a basis for the development of sensitive, humanistic quality nursing care for both the child and his/her family, this then enhances the potential for best practice for children living with a life-threatening illness.

Abstract: Plunket nurses are New Zealand child health nurses who work in the community with the families of new babies and preschool children. Their work is called child health surveillance and this is considered to involve routine and unproblematic practices which are generally carried out in homes and clinics in the context of a relationship with the child's mother (Ministry of Health 1996; Royal New Zealand Plunket Society 1997). However, evidence in the literature that surveillance can have implications for power relations throws doubts on official claims that the relationship between the mother and nurse operates as a partnership (Trout and Polaschek 1996). The purpose of this thesis was to explore the way in which surveillance is constituted within the discourses of Plunket nurses and to examine these discourses for any implications of unequal power relations. Foucauldian discourse theory and poststructuralism, which informed this thesis, provided the opportunity to challenge assumptions about power and knowledge in the child health context. Analysis of the discourses generated by interviews with five Plunket nurses revealed that, contrary to the claims in the official literature, the relationship between the Plunket nurse and the mother is not that of an equal partnership but is constituted in various and unexpected ways. It was through the nurses' discourses of surveillance that the power relations underpinning this relationship were surfaced. While these discourses suggested that many mothers who use the nursing service are actively involved on their own terms, there are a number of women for whom the surveillance activities of the nurse have been shown to be particularly intrusive (Mayall 1986; Clinton 1988; Bloor and McIntosh 1990; Knott and Latter 1999). It may be primarily this unwelcome surveillance which accounts for the considerable number of women who, the statistics show, cease using Plunket services particularly in the early months. It is perhaps for this reason that the nurses in this study locate themselves as being caught between divergent discourses of support and surveillance. Findings indicate that the resolution of this dilemma by abandoning surveillance practices might improve maternal satisfaction with the Plunket nursing service. The author concludes that a child health service responsive to mothers' stated needs rather than institutional requirements or the nurse's own agenda could lead to a more open and equal relationship between mother and nurse. This relationship would be likely to benefit mothers and babies and, at the same time, enhance both nursing practice and nurses' satisfaction with their work.

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: Mothers, whose children had undergone a liver transplant more than one year ago at time of interview and whose children were outpatients of Starship Children's Hospital, were invited to participate in this research. A Heideggerian hermeneutic phenomenological approach, informed by the work of van Manen (1990) was used. Three mothers of children who had received a liver transplant were interviewed to reveal the meanings of the phenomenon – what is the meaning of lived experience of mothers in caring for their child who has undergone and recovered following liver transplantation? Little previous study regarding mothers' lived experience of caring for their child, who had recovered from a liver transplant, was found in the literature. The emerging themes were punctuated with stress being a consistent feature. Utilising Ruddick's (1983) concepts of maternal thinking, the emerging themes were merged within the three interests governing maternal practice; preservation, growth and acceptability. The absolute capacity for attentive love draws the experience together. An essential theme identified out of the analysis was the concept of survival relating to the unique features of liver transplantation and the consequences of liver rejection and failure. The findings contribute to the understanding of the phenomenon, emphasising the need for good support systems for families of children who have undergone transplantation; assistance in the establishment of maternal coping strategies and regular feedback on the children's progress acknowledging the role and care provided by mothers.

Abstract: This study investigated issues surrounding the high numbers of preventable admissions of young children with acute illnesses, particularly amongst Maori and Pacific children. It focuses on what happens once these children are discharged. Its aims were to find out what the expressed needs of parents were, as they cared for their child, once home. Whilst there has been a small amount of international research undertaken in this area, there is little known about expressed parent need in the New Zealand context. This exploratory descriptive study involved parents of under five year old children, who had been admitted to a hospital, with one of five acute illnesses. Eighteen parents were surveyed over the telephone. This study found the parents expressed a need for reassurance and advice once home, and that they worried about their child getting sick again. It highlighted gaps in discharge planning and support. None of the parents had received a written discharge plan for their child. Only five parents had received either a contact number for advice or a referral back to their primary care provider. This study found that whilst some parents considered their discharge needs had been met, others considered that they had not. Four local discharge practice opportunities to support these families were recommended, these included, providing parents and caregivers with an individualised written discharge plan, giving a contact number for advice after discharge, offering a follow-up phone call in the first 48 hours, and ensuring that all children have a referral back to their primary health care provider. Areas for further research were highlighted, including the need for a larger study to explore and compare the needs of rural and urban parents, and Maori and Pacific parents.