The experiences of young people with epidermolysis bullosa simplex: a qualitative study

Article


Williams, E. Felicity, Gannon, K. and Soon, Kristina 2011. The experiences of young people with epidermolysis bullosa simplex: a qualitative study. Journal of Health Psychology. 16 (5), pp. 701-710.
AuthorsWilliams, E. Felicity, Gannon, K. and Soon, Kristina
Abstract

Objective: To explore the experiences of young people with Epidermolysis Bullosa Simplex (EBS).
Method: 11 participants aged 10 -14 years were interviewed. Interpretative Phenomenological Analysis was employed.
Results: 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’.
Conclusions: 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.

Keywordsepidermolysis bullosa; children; chronic conditions; Interpretative Phenomenological Analysis
JournalJournal of Health Psychology
Journal citation16 (5), pp. 701-710
Year2011
Accepted author manuscript
License
CC BY-ND
Web address (URL)http://hdl.handle.net/10552/1571
Publication dates
Print25 Mar 2011
Publication process dates
Deposited30 Apr 2012
Additional information

Citation:
Williams, E.F., Gannon, K.N. and Soon, K. (2011) 'The experiences of young people with Epidermolysis Bullosa Simplex: A qualitative study'. Journal of Health Psychology, 16(5), pp. 701-710, doi: 10.1177/1359105310387954.

Permalink -

https://repository.uel.ac.uk/item/860zv

Download files


Accepted author manuscript
  • 224
    total views
  • 402
    total downloads
  • 4
    views this month
  • 0
    downloads this month

Export as

Related outputs

Challenges faced by mental health interpreters in East London: An interpretative phenomenological analysis
Jidong, D. E., Tribe, R. and Gannon, K. 2020. Challenges faced by mental health interpreters in East London: An interpretative phenomenological analysis. Counselling Psychology Review. 35 (2), pp. 40-51.
GP experience and understandings of providing follow‐up care in prostate cancer survivors in England
Margariti, C., Gannon, K. N., Walsh, J. J. and Green, J. S. A. 2020. GP experience and understandings of providing follow‐up care in prostate cancer survivors in England. Health and Social Care in the Community. 28 (5), pp. 1468-1478. https://doi.org/10.1111/hsc.12969
How do new/recent mothers experience unwanted harm thoughts related to their newborn? A thematic analysis
Boyd, C. and Gannon, K. 2019. How do new/recent mothers experience unwanted harm thoughts related to their newborn? A thematic analysis. Journal of Reproductive and Infant Psychology. 39 (21), pp. 153-165. https://doi.org/10.1080/02646838.2019.1657819
Experiences of UK African-Caribbean Prostate Cancer Survivors of Discharge to primary care
Margariti, Charikleia, Gannon, K., Thompson, Rose, Walsh, J. and Green, James 2019. Experiences of UK African-Caribbean Prostate Cancer Survivors of Discharge to primary care. Ethnicity and Health. 26 (8), pp. 1115-1129. https://doi.org/10.1080/13557858.2019.1606162
Early Improvement in Eating Attitudes during Cognitive Behavioural Therapy for Eating Disorders: The Impact of Personality Disorder Cognitions
Park, Emma C., Waller, Glenn and Gannon, K. 2013. Early Improvement in Eating Attitudes during Cognitive Behavioural Therapy for Eating Disorders: The Impact of Personality Disorder Cognitions. Behavioural and Cognitive Psychotherapy. 42 (02), pp. 224-237. https://doi.org/10.1017/S1352465812001117
Evidence-Based Practice - the Ethical Dimension
Gannon, K. 2015. Evidence-Based Practice - the Ethical Dimension. in: Tribe, Rachel and Morrissey, Jean (ed.) Handbook of Professional and Ethical Practice for Psychologists, Counsellors and Psychotherapists Routledge.
Adolescent and caregivers’ experiences of electronic adherence assessment in paediatric problematic severe asthma
Stewart, Amy C, Gannon, K., Beresford, Fran and Fleming, Louise 2018. Adolescent and caregivers’ experiences of electronic adherence assessment in paediatric problematic severe asthma. Journal of Child Health Care. 22 (2), pp. 238-250. https://doi.org/10.1177/1367493517753082
The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities
Marwood, Hayley, Chinn, Deborah, Gannon, K. and Scior, Katrina 2017. The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 31 (1), pp. 76-86. https://doi.org/10.1111/jar.12328
Experiences of adolescent lung transplant recipients: A qualitative study
Anderson, S. M., Wray, J., Ralph, A., Spencer, H., Lunnon-Wood, T. and Gannon, K. 2017. Experiences of adolescent lung transplant recipients: A qualitative study. Pediatric Transplantation. 21 (3), p. e12878. https://doi.org/10.1111/petr.12878
How do nurses experience working with adolescents with a diagnosis of ‘personality disorder’ or ‘emerging personality disorder'?
Reiss, R. and Gannon, K. 2015. How do nurses experience working with adolescents with a diagnosis of ‘personality disorder’ or ‘emerging personality disorder'? Journal of Psychiatric and Mental Health Nursing. 22 (4), pp. 244-250.
Belongings Beyond Borders: Reflections of Young Refugees on Their Relationships with Location
Muir, Jessica and Gannon, K. 2015. Belongings Beyond Borders: Reflections of Young Refugees on Their Relationships with Location. Journal of Community & Applied Social Psychology. https://doi.org/10.1002/casp.2260
“Should I really be here?” Exploring the relationship between Black men’s conceptions of wellbeing, subject positions and help-seeking behaviour
Myrie, Chanelle V. and Gannon, K. 2013. “Should I really be here?” Exploring the relationship between Black men’s conceptions of wellbeing, subject positions and help-seeking behaviour. Diversity and Equality in Health and Care. 10 (1), pp. 1-22.
Beyond evidence-based practice: rethinking the relationship between research, theory and practice
Harper, D., Gannon, K. and Robinson, M. 2013. Beyond evidence-based practice: rethinking the relationship between research, theory and practice. in: Bayne, Rowan and Jinks, Gordon (ed.) Applied psychology: research, training and practice, second edition London SAGE.
Re-constructing masculinity following radical prostatectomy for prostate cancer
Gannon, K., Guerro-Blanco, Monica, Patel, Anup and Abel, Paul 2010. Re-constructing masculinity following radical prostatectomy for prostate cancer. Aging Male. 13 (4), pp. 258-264.