The experiences of young people with Epidermolysis Bullosa Simplex: A qualitative study

被引：38

作者：

Williams, E. Felicity

Gannon, Kenneth ^{[1
]}

Soon, Kristina ^{[2
]}

机构：

[1] Univ E London, Sch Psychol, London E15 4LZ, England

[2] Great Ormond St Hosp Sick Children, London WC1N 3JH, England

来源：

JOURNAL OF HEALTH PSYCHOLOGY | 2011年 / 16卷 / 05期

关键词：

children; chronic conditions; Epidermolysis Bullosa; IPA; MAIN PROBLEMS; OF-LIFE; CHILDREN; PARENTS; SATISFACTION; ADOLESCENCE; MORBIDITY; CAMP;

D O I：

10.1177/1359105310387954

中图分类号：

B849 [应用心理学];

学科分类号：

040203 ;

摘要：

The objective of this study was to explore the experiences of young people with Epidermolysis Bullosa Simplex (EBS). Eleven participants aged 10-14 years were interviewed and Interpretative Phenomenological Analysis was employed. A key theme was 'self as different'. This related to experiences of negative treatment and exclusion from peers; a lack of understanding of others about the condition; and a sense of the self as 'wrong'. Findings indicate the importance of providing appropriate psychological and peer support, as well as wider community education and intervention, as part of the holistic treatment of young people with this chronic, painful and visible skin condition.

引用

页码：701 / 710

页数：10

共 34 条

[1] The relationship between body shape satisfaction and self-esteem: An investigation of gender and class differences [J].