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: Margaret May Blackwell Trust Travel Study Fellowship 2009/2010.
This report is an exploration of some current international trends and tools in the delivery of services supporting families with young children that aim to utilise a partnership approach between health providers, families and their communities. The MMB scholarhsip for 2009/2010 included six weeks of international travel in order to consult with a range of people in realtion to services provided to parents with young children in their various communities. My proposal was to explore current policies supporting Family Partnership (FP)approaches in health services; trends relating to FP approaches in practice; tools supporting FP practice for clinicians; as well as recent FP training and initiatives.

Abstract: In this research, three female registered nurses relived their experiences of being caregiver to a family member who was ill, elderly or had an enduring illness and explored whether they chose, or felt obligated, to assume the role of caregiver because they were nurses. This research was an exploratory descriptive study utilising narrative as inquiry and the method of story-telling. It is women-centered, taking into account the unpaid role of caregiving within families most often fulfilled by women. Four main themes were identified and renamed to highlight research findings – these were the culture of nursing, silence of the nurses, emotional cloudiness, and the natural role of the nurse. Through this study it is hoped that nurses will be more aware of the impact their caregiving roles have had on their lives. The importance in acknowledging the effects of caregiving, relevance of informing employers to promote supportiveness, implications for workforce development and recognising the loss of objectivity in caring when emotions are involved, are identified in this research. The author suggests that further indepth research about these concepts would be a valuable contribution to the nursing profession and ideas for future research have been identified.

Abstract: This article examines a growing number of cases in New Zealand in which parents and guardians are required to make life and death ethical decisions on behalf of their seriously ill child. Increasingly, nurses and other practitioners are expected to more closely inform, involve and support the rights of parents or guardians in such situations. Differing moral and ethical values between the medical team and parents or guardians can lead to difficult decision making situations. The article analyses the moral parameters, processes, outcomes and ethical responses that must be considered when life and death ethical decisions involving children are made. It concludes with a recommendation that nurses should be recognised as perhaps the most suitable of all health care personnel when careful mediation is needed to produce an acceptable moral outcome in difficult ethical situations.

Abstract: Grounded theory methodology has guided the grounded theory methods used to explore the acute care paediatric nurses' perspective of what they do when a child has had a severe accident. The research was initiated from the experience of nursing children in the context of a rehabilitation centre and wondering how acute care nurses promoted a child's recovery after a severe unintentional injury. Many avenues were used to search international and New Zealand literature but the scarcity of literature related to what acute care paediatric nurses do was evident. Nursing children in the acute care ward after a severe accident is complex. It encompasses nursing the family when they are experiencing a crisis. It is critical that the acute care nurse monitors and ensures the child's physiological needs are met, and the nurse “works with” the child to maintain and advance medical stability. Nursing interactions are an important part of “working with”, communication is the essence of nursing. This research has focussed on the nurses' social processes whilst caring for the physical needs of the child and interacting with the family and multidisciplinary team when appropriate. An effective working-relationship with a nurse and family is founded on trust. Grounded theory methods supported the process of exploring the social processes of “building trust” whilst “working with” families in a vulnerable position. Nurses rely on rapport to be invited into a family's space to “work with” and support the re-establishment of the parenting role. The “stepping in and out” of an effective working-relationship with a family is reliant on trust. Nurses build trust by spending time to “be with”, using chat to get to know each other, involving and supporting the family to parent a “different” child and reassuring and giving realistic hope to help the child and parents cope with their changed future. A substantive theory of the concept of “building trust to work with” has been developed using grounded theory methods. The theory has been conceptualised using the perspective of seven registered nurses working in paediatric acute care wards that admit children who have had a severe traumatic accident.

Abstract: Investigates the bicultural nature of the Family Partnership Model for working with Maori whanau in the context of well-child care services. Reports a mixed-methods study in 2 phases: an online survey of 23 nurses trained in the Family Partnership Model and 23 not trained in the model; observation of nurses' practice and interviews with 10 matched nurse-Maori client pairs. Identifies 3 aspects of the findings: respectful relationships, allowing clients to lead, and lack of skills.

Abstract: This research examines how nurses negotiate the context of the Intensive Care Unit (ICU) while working with families. The action research described in this thesis developed through a series of meetings and conversations where the conversations supported the reflexive intent of the research. In commissioning the research, the design of the meetings and conversations were as a series of overlapping actions. Data collection and data analysis occurred in the action research by meetings, reflective conversations, ad libitum observations, and in a research journal. Conceptual maps explain the progress and findings of the research in this thesis while categories distilled from the conversations also support the findings in the research. The Family Action Research Group that was established within this project proposed a Family Assessment Form for the family to provide an assessment of themselves and the patient. Implementing this assessment tool demonstrated that clear information was needed for the family in the ICU. Findings in this research focus on developing action research and family care in ICU. Findings also focused on the role of the researcher being of and not being of the context where action research is undertaken. Recommendations include staff examining relationships for potential asymmetries and seeking ways to address these to support families and staff. Suggested strategies for developing action research in a clinical context include detailed planning, clear focusing, transparency of data, and working to explain change initiatives through the research are also included.