An action research study to explore the nature of the nurse consultant role in the care of children and young people.

AIMS AND OBJECTIVES: An action research study was undertaken to explore the development of the nurse consultant role when caring for children and young people. BACKGROUND: Five nurse consultants in different areas of specialist care in a tertiary paediatric hospital undertook the study when implementing the new role of nurse consultant into the hospital. METHODS: Action research meetings took place over a year. The nurse consultants then collated and analysed data using thematic analysis during the second year. A research fellow facilitated meetings, carried out participant observation, and coordinated the action research project. RESULTS: Data analysis revealed 22 subthemes grouped into four overarching themes: shaping the role; shaping child-centred care through consultancy; taking responsibility for practice; and leadership. These roles and their ease and complexity within the nurse consultant role are examined in further detail in this paper. Balancing the four key components in a newly developing role was initially complex and required support. Over time the nurse consultants developed the necessary skills to perform fully in all areas. A major challenge was developing the research role, a key function of the nurse consultant role. By the end of the study, all nurse consultants were actively embarking upon their own research either in preparation for or as part of Doctoral studies. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: While there are many similarities with nurse consultants in adult practice, one major difference was the nurse consultant role in supporting families when caring for children and young people. This meant having a three-way communication style: with the family, the child/young person, and other healthcare professionals. This communication style was observed by the research fellow in participant observation of the nurse consultants undertaking clinical care and is described further in the analysis of the role.

An ethnography of a children's renal unit: experiences of children and young people with long-term renal illness.

AIM: This study explored the experience of long-term renal illness, including issues concerning compliance with treatment, from the perspectives of children and young people. BACKGROUND: Children and young people have difficulty complying with renal treatment; research in this area usually focuses on their compliance with a narrow range of behaviours: compliance with dialysis, tablet taking and dietary and fluid restrictions. Renal compliance studies are usually premised on the assumption that children will automatically comply with treatment and/or that blame for non-compliance rests with the child and family. DESIGN: The study, underpinned by a view of children as competent social agents, used ethnography to explore and describe the everyday experience of long-term renal illness. METHOD: Ethnographic fieldwork--involving participant observation, informal interviews and the use of children's drawings--took place over 16 months in a hospital renal unit comprising an inpatient ward, a haemodialysis unit and an outpatient clinic. The primary participants were 13 children; 14 carers and 36 staff members also participated. Data were interrogated through descriptive and thematic forms of analysis. RESULTS: This study reveals participants' perspectives on the physical and social impact of renal treatment. It also provides a conceptualisation of life with long-term renal illness that highlights children's management of 'illness labour', their inhabitation 'renal geographical space', 'a renal body' and a 'renal social world'. CONCLUSIONS: These findings show how compliance with renal treatment involves particular embodied experiences that are hard for children to manage. Traditional views of compliance/non-compliance render children's embodied experience and their labour in managing dialysis, thirst and their difficulties with tablet taking irrelevant, whilst this study shows these as highly relevant to children. RELEVANCE TO CLINICAL PRACTICE: The conceptualisation of children's experience arising in this study provides a new way of considering the embodied experience of children with long-term renal illness.