Caregivers' experiences of feeding children with cerebral palsy: a systematic review of qualitative evidence.

Abstract

Objective: The objective of this review was to investigate the feeding experiences of caregivers of children with cerebral palsy, in any setting, by identifying, critically appraising, and synthesizing the relevant literature.

Introduction: Feeding difficulties in children with cerebral palsy are common and affect both children and caregivers. Difficulties include dysphagia and risk of aspiration, which can result in poor growth and development. Caregivers find feeding challenging and stressful due to the time involved, fear of aspiration, and the pressure of meeting other family demands. Finding ways to support caregivers effectively in feeding will have important health and quality-of-life outcomes for caregivers and their children with cerebral palsy.

Inclusion criteria: Studies with qualitative data exploring informal caregivers' experiences (eg, perspectives, challenges, feelings) of feeding children with cerebral palsy, in any country or setting, were included. Informal caregivers (eg, parents, foster carers, grandparents) could be of any age, gender, or cultural background. Children with cerebral palsy of any severity level were included. Formal caregivers, such as health professionals, were ineligible. The feeding method could include oral feeding, tube feeding, or both.

Methods: The JBI methodology for systematic reviews of qualitative evidence was followed. The databases searched on June 27, 2023, included CINAHL (EBSCOhost), APA PsycINFO (Ovid), MEDLINE (Ovid), ProQuest Central, Scopus, and ProQuest Dissertations and Theses. Two members of the review team independently screened titles and abstracts, and full texts of eligible studies. Three members of the review team independently appraised selected studies for methodological quality. The meta-aggregation approach was used for data synthesis to pool findings from included studies to form categories and synthesized findings. Finally, the ConQual approach was used to establish confidence in the synthesized findings based on their dependability and credibility.

Results: From the literature search and citation searching, 619 records were screened, from which 10 studies were included in the review. A total of 196 findings were extracted for analysis, which resulted in 19 categories and 5 synthesized findings. The synthesized findings were "Feeding and feeding difficulties," "Caregiver emotions and burden around feeding a child with cerebral palsy," "Caregiver support and feeding," "Feeding, social interaction, and mothering," and "Gastrostomy tube decisions and perceptions." The overall ConQual score for each synthesized finding was rated as low.

Conclusions: Feeding a child with CP was a difficult experience for caregivers. Caregivers were able to problem-solve feeding issues, but they often felt unsupported by health professionals and services. Feeding negatively impacted caregivers' and children's social interactions outside the home, where caregivers sought to achieve normalcy for their child and family. However, feeding was described as an essential part of mothering, and caregivers felt like a failure if they could not feed their child orally. Caregivers struggled with the decision to allow their child to have a gastrostomy tube, but most viewed it positively once it was inserted. More research into other cultures and research into fathers' experiences of feeding children with cerebral palsy is recommended.