The experience of children and families with lymphoedema--a journey within a journey.
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.
Moffatt
Christine J
CJ
University of Glasgow, Glasgow, UK. christine.moffatt@cricp.org.uk
Murray
Susie G
SG
D000203:Activities of Daily Living; D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008209:Lymphedema / Q000175:diagnosis* / Q000628:therapy*; D008297:Male; D010287:Parent-Child Relations; D035781:Siblings; D012803:Sick Role
J Pediatr Nurs. 2002 Dec;17(6):424-38
12518283
J Adv Nurs. 2000 Oct;32(4):913-21
11095230
Int J Palliat Nurs. 2002 Sep;8(9):444-51
12362128
Child Adolesc Psychiatr Clin N Am. 2003 Jul;12(3):585-92
12910824
Clin Psychol Psychother. 2008 May-Jun;15(3):164-72
19115437
Pediatr Diabetes. 2008 Jul 28;9(4 Pt 1):308-11
18466212
Dev Med Child Neurol. 1996 Jul;38(7):567-77
8674907
Sociol Health Illn. 1982 Jul;4(2):167-82
10260456
Arch Gen Psychiatry. 1987 Dec;44(12):1040-6
2961319
J Pediatr Psychol. 2003 Apr-May;28(3):185-90
12654943
QJM. 2003 Oct;96(10):731-8
14500859
Child Care Health Dev. 1999 Jul;25(4):267-83
10399032
J Behav Med. 2002 Oct;25(5):411-24
12442558
J Child Psychol Psychiatry. 2000 Mar;41(3):309-17
10784078
Indian J Pediatr. 2004 Aug;71(8):695-9
15345869
J Child Health Care. 2002 Dec;6(4):245-57
12503895
Qual Health Res. 2009 Jan;19(1):94-104
18997151
J Pediatr Nurs. 2008 Oct;23(5):372-85
18804018
Br J Med Psychol. 1996 Mar;69 ( Pt 1):33-45
8829398
Arch Dis Child. 2001 Mar;84(3):205-11
11207164
Am J Med Genet A. 2005 Mar 1;133A(2):170-5
15666306
Issues Compr Pediatr Nurs. 1992 Jul-Sep;15(3):199-213
1308235
Res Nurs Health. 1986 Sep;9(3):215-22
2945228
Rehabil Psychol. 2009 Feb;54(1):109-15
19618710