The experience of parenting children with chronic health conditions: a new reality

Aim: This study was undertaken to synthesise recent qualitative literature in the years 2000 to 2009, exploring the phenomenon of parents’ experiences of parenting a child with one or more chronic health conditions. Background: The experience of parenting children with chronic health conditions has been predominantly studied by examining the effects of specific illnesses such as sickle cell anaemia and cystic fibrosis. While the chronic conditions may differ, the parents of children with any chronic illness appear to experience similar phenomena as they care for and parent their affected children. Method: Metasynthesis is an exacting process of analysis of focused qualitative research results aimed at advancing knowledge and concept development through the synthesis and summation of themes and concepts extracted from the included studies. Results: The parents of children with a wide range of chronic conditions described similar experiences in the reviewed qualitative studies. The key findings of this metasynthesis were major themes describing grief, particularly relating to the diagnosis, and as an ongoing chronic state; a lack of information; and the inadequacy of some relationships with professionals. Conclusion: This metasynthesis provides an enhanced empirical understanding of the experiences of people who parent and care for children with chronic health conditions as described by the reviewed literature. While it is apparent that many of these experiences are perceived as negative and undesirable, parents are also noted to describe positive experiences which enhance their lives and give them meaning. Relevance to clinical practice. This metasynthesis provides healthcare professionals with information pertaining to the lived experiences of the parents of children with chronic health conditions. It highlights areas requiring special attention such as communication, support, and understanding, and challenges the concepts of familycentred care and true partnership between the child, parents and professionals