Young carers: growing up with chronic illness in the family - a systematic review 2007-2017

Abstract

Young carers are children or young people who look after family members who are ill or have disabilities. They take over similar caregiving responsibilities to those of adult family carers and need special support. The purpose of this literature review was to summarize the body of knowledge about young carers’ lives with a special focus on their personal experiences, impact of caring, needs and coping behaviors. A systematic review was carried out, including quantitative and qualitative studies as well as reviews published in English or German. The following databases were searched: Cinahl, Embase®, PubMed®, Gesis sowiport, ERIC®, Cochrane Library, Pubpsych, PsychArticles (1/2007 to 6/2017). The Critical Appraisal Skills Programme (CASP) and the methodology checklist NICE were used to assess the literature. After appraisal, 25 studies which considered young carers between four and 25 years of age were included. Studies reported that many children in families with chronically ill members are highly involved in caring. Due to this responsibility, they spend most of their time at home. Although the caregiving experiences are pervasive, the children conceal the conditions of their relatives from others. They also do not want to be identified as young carers. Thus, their social experiences are limited. These children or adolescents would like to live a “normal live”. They prioritize their family member’s needs over their own. They would like professional support, which recognizes the real needs of their family members. This systematic review shows that since 2007 the situation of affected children and adolescents has achieved an important place in international research and also in German-language countries. Based on the included studies, it has been possible to identify theoretical models that help to describe and explain the phenomenon of young carers. In order to provide appropriate support and interventions, it is of importance for the professionals to know and consider that a family-oriented perspective is vital.