Supporting families of children with a feeding tube: caregivers’ and professionals’ perspectives on formal and informal support

Le résumé fourni par la source

Pediatric tube feeding results in immediate short-term benefits for children and their caregivers. However, caregivers may experience elevated psychological symptoms, loss of normalcy of mealtime, and disruption of the family unit. Peer support may be one support option for the caregivers. The aim was to investigate caregivers’ and healthcare professionals’ perspectives on formal and informal support, with an emphasis on peer support. Mixed-methods surveys were administered to caregivers and professionals who cared for children with a feeding tube. Descriptive statistics and content analysis were conducted to analyze the results, followed by data integration and meaning-making. Thirty caregivers and 38 professionals completed the surveys. Both groups shared in-depth discussions on systemic challenges in formal support. Although many caregivers indicated sufficient levels of informal support, feelings of isolation were prominent. Three-quarters of participants had no experience with peer support, citing barriers including information gaps, lack of time, and personal reasons. Nevertheless, caregivers who engaged in peer support reported significant benefits, including emotional support, practical advice, and a sense of community. Caregivers considering peer support universally valued positive interactions and practical support. Professionals and caregivers raised various additional support suggestions. The diverse support needs of caregivers of children with a feeding tube warrant tailored support options.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.