The experience of children and families with lymphedema

Infants, Babies, Toddlers, Teens with Lymphedema, lymphedema chronic arthritis, pediatric lymphedema, debulking surgery children, arm and leg swelling in babies, daily care

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

The experience of children and families with lymphedema

Postby patoco » Mon May 31, 2010 8:44 am

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

Christine J Moffatt 1 , Susie G Murray 2
1 CJ Moffatt, CBE, RN, PhD, University of Glasgow, Glasgow, UK ; 2 SG Murray, RN, MA, Centre for Research and Implementation of Clinical Practice, London, UK
Correspondence to Professor CJ Moffatt, CBE, RN, PhD, CRICP, St Luke's Crypt, Sydney Street, SW3 6NH London, UK


Children with chronic illness • Expert knowledge • Impact on families • Lymphoedema • Parental advocacy


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. ... 1&SRETRY=0
User avatar
Site Admin
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Return to Children and Lymphedema

Who is online

Users browsing this forum: No registered users and 2 guests