Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care

Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care

Pyke H; Norton S; Blaakman S W; Korones D N

Dysphagia

2019

children; nutrition; nutritional needs; palliative care; parent experiences; pediatric palliative care

Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional needs amidst the uncertainty of the illness. The purpose of this study was to explore parents' experiences, including strategies employed to cope with stressors and manage the feeding, swallowing, and nutrition of their children. Method(s): A qualitative descriptive design was used. Data was collected from 20 parents and 20 children. The parents (17 women) were aged 25-55 (mean 36). Children ranged from 11 days to 5 years (mean 15 months) with diagnoses including neurological conditions (6), congenital heart malformations (6), mitochondrial disorders (2), prematurity (8), and cancer (1). Data from parents: interviews, field observations, and levels of distress. Data from children was abstracted from their medical records. Analysis is ongoing. Interviews were transcribed and are being coded using open and process coding. Other data is being used to describe the sample and provide context. Result(s): (1) Guilt and grief are prominent for parents with feelings of failure as a parent. Distress levels were high related to the overall experience and the feeding, swallowing, and nutrition issues. (2) Parents cope by normalizing their experiences, taking it day by day, and maintaining optimism. (3) The projected trajectory of the child's illness affected the parents' experiences. (4) Feeding and nutrition management included taking part in providing nutrition in the manner best for the child and finding alternative ways to nurture and bond with the child. Parents relied on support of family, other parents, and online groups. Good interprofessional communication was felt to be key to good care for the child. Conclusions (Including Clinical Relevance): Having a child with a life-threatening illness, affecting the parent's ability to feed the child, is fraught with grief, high levels of distress, and difficulty achieving the parenting role. Over time parents adapt and modify their role. Parents expressed a need for additional support and training to manage their child's nutrition. Health care professionals must take into account the emotional burden that parents experience. Services should be family-centered with support and training for parents.

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June 2020 List