Parents’ Experiences of Feeding, Swallowing, and Nutrition in Children Receiving Palliative Care

Abstract

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Health Practice Research, 2020.Objectives:  Describe the experience of parents providing nutrition to children with chronic life-threatening conditions receiving palliative care.  Characterize strategies employed by parents in coping with distress when they are unable to, or struggle to, feed their child. Background: Very little is known about how parents experience nutrition concerns amidst the stress and uncertainty of a child’s chronic life-threatening condition. Description: The purpose of this study was to explore and characterize parents’ experiences with, and responses to, providing nutrition when oral feeding was difficult or impossible for their child. Method(s): A qualitative descriptive design was used. There were 22 children, 19 mothers, and 3 fathers. The children ranged in age from 11 days to 5 years (mean 18 months). The children’s diagnoses included neurological conditions (11), congenital heart malformations (6), mitochondrial disorders (2), prematurity (9), and cancer (3). Race/Ethnicity: White 82% (36), African American 9% (4), Other 9% (4). Inclusion criteria for parents: English-speaking and having a child with nutrition difficulty receiving palliative care (PC). Recruitment occurred through pediatric PC services at a university hospital and home-care agency. Data from parents: interviews, field observations, and distress levels. Data from children: medical record abstraction. Distress levels were used to describe the parents. Interviews were transcribed verbatim, entered into Atlas.ti for data management, and were in analyzed using open and process coding. Within case analysis was used to find unique qualities in cases while across case analysis identified commonalities amongst the cases. Result(s): There were 3 key findings: 1. Guilt and grief are prominent for parents with feelings of failure as a parent and high levels of distress around the altered ability to provide nutrition to their child. 2. Parents cope by normalizing their experiences, taking it day-by-day, maintaining optimism, and modifying their role to meet the needs of the child. 3. The child’s projected illness trajectory affects the parents’ experiences with feeding. Conclusions: Having a child with a chronic life-threatening condition impacting nutrition is fraught with grief and distress. Parents expressed a need for support in coping with the distress associated with being unable to, or struggling to, feed their child