Résumé

Children with Chronic Intestinal Failure (CIF) are usually dependent on Total Parenteral Nutrition (TPN) – a life-saving intravenous therapy administered at home, allowing the child to grow and survive. These children and their families often face a myriad of psychological, emotional, social and practical challenges. Medical Social Workers in the hospital setting play an important role by addressing the psychosocial aspects of illness. Our current understanding of the psychosocial impact of paediatric CIF is limited to practice wisdom. Hence, the aim of this systematic review is to describe what is known about the psychosocial impact of CIF on children and their families.We conducted a systematic review of literature published up until February 2022. Three databases, CINAHL, PsycINFO and PubMed, were searched. Systematic data extraction was performed and a narrative approach to data synthesis was conducted. Papers were included if they described original research published in a peer review journal and focused on children with CIF and their family members.Sixteen papers (1 mixed, 6 qualitative and 9 quantitative studies) with 473 patients spanning across 5 countries were included. Common findings include caregivers experiencing emotional difficulties due to the intensive demands of treatment and unpredictable nature of illness. Children and families’ participation in social activities were limited as a result of having to remain at home. Caregivers also commonly expressed the need for respite but experience difficulties receiving it due to complex regime. More recent studies report that family’s close involvement in child’s care increases family functioning.Due to the limited number of studies conducted in an Asian context, further research in this area is necessary to determine if there are any contextual similarities or differences influencing the psychosocial impact. An elaboration of the findings and discussion of the implications to social work practice will be presented at the conference.

Mots clés (séparés par des virgules)

Parenteral nutrition, review, psychological, social, parents