Parental care for infants with feeding tube: psychosocial repercussions

Abstract

Objectives: to understand the psychosocial repercussions experienced by caregiving parents, resulting from care for the child with dysphagic cleft lip and palate. Methods: qualitative study, developed in a tertiary hospital in September 2016. The sample defined by theoretical saturation consisted of seven mothers. Data collection was performed by unstructured interview, being audio-recorded and fully transcribed. Symbolic Interactionism was used as theoretical framework, and Thematic Content Analysis as methodological framework. Results: the following themes emerged: diagnosisimpact and coping; coping with overload and stress; interaction between caregivers as an acceptance and coping strategy; impact on family and social life of caregivers; and curiosity coping, and family and community prejudice. Final considerations: despite the physical and emotional overload, the mother figure plays the main and determining role in care, reflecting the complexity of care.

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

“…Another research study that included informal caregivers of infants with orofacial cleft, dysphagia and who were fed by tube indicated that the mothers, for assuming the integral care of these children, either because they do not receive support or because they do not trust the provision of care provided by other people, felt overloaded and stressed 13 .…”

“…In short, family-centered care models are needed to support the family unit in caring for a child with dysphagia and/or with eating difficulties. The parents and the informal caregivers must be included in the process and receive monitoring of their physical and mental well-being [12][13] .…”

Paediatric tube‐feeding: An agenda for care improvement and research

“…In research, paediatric tube‐feeding tends to be addressed with reference to particular conditions or diseases (e.g. References 14–19), but some studies have examined tube‐feeding across more than one clinical domain 20,21 . Children who tube‐feed represent a heterogeneous group with multiple co‐morbidities 22 .…”

“…Many families of children who tube‐feed say what matters to them is being connected with other families with children who tube feed 1,14 . Such connections are found by some families through social media groups, 14 but many remain disconnected from others sharing similar experiences.…”

“…Many families of children who tube‐feed say what matters to them is being connected with other families with children who tube feed 1,14 . Such connections are found by some families through social media groups, 14 but many remain disconnected from others sharing similar experiences. Child and family outcomes can be improved by connecting families with each other, and clinicians can play a significant role in linking families to tube‐feeding‐focused groups: Education is not a uni‐directional process from clinician to parent.…”