Mothering a young child with intestinal failure on parenteral nutrition: an interpretative phenomenological analysis

BF Psychology

Cronin, Leah ; Jackson, Alison

University:University of Glasgow

Department:Institute of Health and Wellbeing

关键词: Parenteral nutrition, lived experience, attachment, intestinal failure, early child development, qualitative research, paediatric chronic illness,resilience, coping.;   

Others  :  http://theses.gla.ac.uk/4625/1/2013CroninDClinPsy.pdf.pdf

来源: University of Glasgow

【 摘 要 】

Background and aims: Parenteral nutrition is a complex, risky procedure administered by parents to children with intestinal failure. Previous research has demonstrated that, while psychological and social challenges are associated with the procedure, families can adapt to their circumstances. The mechanisms through which coping occurs have not been explored. Age-specific exploration, such as feeding and attachment in the early developing child, is also required. This study aims to examine the experience of living and coping with intestinal failure and parenteral nutrition during early childhood (age 0 – 5) from mothers’ perspectives.Methods: Seven mothers with children aged between 0 – 5 years were interviewed using a semi-structured interview schedule. Transcripts were analysed using Interpretative Phenomenological Analysis.Results: A four stage model of experience emerged from the data with specific tasks to negotiate in each stage: experiencing trauma, preparing to launch, transitioning home, and reflection and re-organising. Adjustment and coping in each stage was mediated by individual, interpersonal and environmental/systemic factors.Conclusions: The model of parenteral nutrition has implications for enhancing clinicians’, policy makers’ and health care providers’ understanding of the experience and impact of this procedure on families with young children. Suggestions are made for improvements in the delivery of care and treatment for these children, such as supporting mothers to meet and help each other and providing support around living without food.