Caregivers’ Feeding Experiences and Support of Their Child with Cerebral Palsy

Abstract

Feeding difficulties are often reported in children with cerebral palsy (CP) and are associated with caregiver stress. This study explored the feeding experiences and support of caregivers with children who have CP. A qualitative approach was used where semi-structured telephone interviews were conducted and audio recorded. Thematic analysis was used to code and analyse the transcribed interview data from the eleven mothers that participated. Four major themes were identified from the data: Child-centred world, Making decisions, Knowing their child, and Seeking and receiving support. Caregivers knew their child’s unique needs and made daily decisions around feeding based upon the child’s feedback and changing condition. Family support was viewed as important, although the caregivers still reported feeling stressed. Health professional support varied from “amazing” to “frustrating”, which contributed to the caregivers’ stress. However, no single support strategy was appropriate as their needs or preferences varied. It is recommended that health professionals take an individualised partnership approach with caregivers and their child, with particular attention to those caregivers who lack a friend or family support and those who are physically isolated.

Caregiver experiences of feeding children with developmental disabilities: a qualitative study using interpretative phenomenological analysis from India

“…They also identified various studies where parents reported technology-based distractions as a barrier to the mealtime experience 5. Conversely, studies have also reported caregivers employing inventive, child-specific strategies to promote feeding behaviour 11. When caregivers are unable to access expert care, they come up with strategies of their own.…”

“…Generally, a well-fed child was associated with a happy, healthy child; caregivers did not feel satisfied unless they felt the child had eaten enough 7 11 20. Many expressed concern that their children were underweight, the reason being their inability to feed the child the right amount of food.…”

“…Other studies have also identified culture-specific beliefs in feeding; for example, underweight being caused by witches10; colostrum as ‘dirty’3; feeding as painful for children with disability and hence fed less 21. Authors have also reported caregivers of discounting advice from healthcare professionals, especially when the suggestions were not felt to be relevant or feasible 11. This finding points to the importance of identifying areas where the goals of the caregivers may not be aligned with the healthcare team’s goals and finding ways of resolution.…”

“…Studies have also identified maternal perceptions and cultural beliefs regarding feeding as determinants of child nutritional status 9 10. The need for healthcare professionals to actively listen to parental concerns and to give specific feedback on feeding practices has also been documented 8 9 11. The need for a family-centric approach is paramount in societies where mothers have limited autonomy and the common sources of often inappropriate feeding-related advice are the older women in the family 3.…”

Swallowing Related Problems of Toddlers with Down Syndrome

“…The disruption of this process, and the increase in the burden of parental care regarding feeding and swallowing difficulties due to (i) their signs (i.e., coughing, choking, vomiting, etc. ), (ii) the need for preparation of appropriate foods and liquids for children, (iii) increased meal preparation time and mealtime duration, (iv) negative interactions between children and parents, (v) feeling of incompetence may result in increased parental stress (Hewetson & Singh, 2009 ; Taylor et al, 2022 ). Therefore, early identification of feeding and swallowing difficulties is important to benefit from this developmental period, and to develop potential management plan including both children and their parents (Arts-Rodas & Benoit, 1998 ; Wieseke et al, 2008 ; Prasse & Kikano, 2009 ).…”