The experience of children and families with lymphoedema – a journey within a journey

Abstract

This paper reports on a study in the UK that explored the experience of children suffering with Lymphoedema and that of their families. Qualitative data was collected from 20 children between the ages of 6 and 18 and their respective parents. Single, semi-structured interviews were used in which children and their parents were asked to share how lymphoedema impacted on their family life. Children were asked about their school experience, their dreams and their aspirations. Three categories emerged. Firstly, the negotiation of the health care system. Themes included correct diagnosis, finding robust information and reaching a knowledgeable expert. The second category explored the complex role of the parents as advocates. Themes within this category included the dilemmas of parenting and the increasing challenges as children reached adolescence. The final category involved the impact on the family unit. The first theme concerned the integration of lymphoedema into daily activities and the intrusion on family time. The second explored the impact on siblings and the final theme the changing dilemmas as children moved through the stages of childhood and faced adulthood.

Conservative management of lymphoedema in children: A systematic review

“…Articles excluded from this review included recent research about management of pediatric lymphoedema, which has concentrated on the development of an appropriate response to children within an adult service [18], and the psychosocial support needed by the families of children with lymphoedema [4,5].…”

“…Although children with lymphoedema are estimated to be few in number, the impact on their lives and that of their families is large as parents struggle to manage the psychological and financial impact of lymphoedema and worry about the long term implications for their child [4,5]. Diagnosis of lymphoedema is of-ten delayed: a review of services for people of any age having lymphoedema in Victoria, Australia found that it took an average of 9.4 years for those with primary lymphoedema to be diagnosed, in contrast to an average of 1.5 years for those with secondary lymphoedema [6].…”

Researching children's health experiences: The place for participatory, child‐centered, arts‐based approaches

“…The ability to genuinely engage in meaningful nursing care for children requires practitioners to have an insightful appreciation of what it means to be ill, and how being ill or living with a disability can intrude upon taken‐for‐granted aspects of a child's daily life (Guell, 2007; Moffatt & Murray, 2010; Protudjer, Kozyrskyj, Becker, & Marchessault, 2009). Qualitative research provides a platform for a more informed and illuminative understanding of how illness can shape a child's life‐world, which in turn can help children's nurses to provide empathic nursing care (Carter, Marshall, & Sanders, 2009).…”

Children and adolescents’ experiences of primary lymphoedema: semistructured interview study

“…They felt safe in taking breaks from their garments because they believed they knew their body and could manage increased swelling. However, adolescents feel that their non-adherence is misinterpreted as laziness, rather than a method of coping 18. Concerns about pain and discomfort, or their condition worsening kept them motivated to regularly complete components of their treatment that they could do in private.…”