PhD research study: Quality of life and social support for adults living with EB and other rare skin conditions

RESEARCH

Navigating Quality of Life and Social Support

Sondra Butterworth Co-Author

Sondra Butterworth began her working life as a general nurse. During a career break to have her two children, she decided to study for  a degree in Psychology and went on to gain a Master's degree in Psychology at Manchester Metropolitan University. It was during that time she gained an interest in Community Psychology and the empowerment of people living with disabilities.

Sondra is currently a Health and Social Care PhD student at the University of Chester UK and works for the charity DEBRA UK. This is where Sondra became passionate about the social support and quality of life impact on people affected by Epidermolysis Bullosa (EB), going on to produce the literature review along with Dr. Kate Martin, Consultant Clinical Psychologist EB Service and Dermatology, Solihull Hospital, supported by DEBRA UK. (Read the abstract below.)

The next stage of the research includes an on-line survey which is aimed at adults living with EB and other rare genetic skin conditions.

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Taking part in the survey

If you are aged 18 and over, reside in England and are affected by a rare genetic skin condition you are eligible to take part in this research to evaluate the relationship between quality of life and social support. 
Full details and instructions are provided through the link below.
https://chester.onlinesurveys.ac.uk/quality-of-life-and-social-support

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Quality of life and social support
Case study of adults living with the rare genetic condition Epidermolysis Bullosa:
A literature review.
Authors: Butterworth, S., Mitchell, A., Mason-Whithead, E., Martin, K. 2018.

This literature review was conducted to discover what research is available which explores the relationship between quality of life and social support for people living with the effects of the rare genetic condition Epidermolysis Bullosa (EB). This review is part of a larger research study which aims to gain a deeper understanding of the social aspects of living with EB and other rare genetic skin conditions.

The need to find a cure for EB is paramount and dominates research in this field of practice. Consequently and understandably, most of the research about the effects of EB is based on the medical aspects of the condition. The physical effects are obvious to those working with and caring for people living with EB. However, there is limited research into the psychological and social effects of living with the condition.

The National Health Service Outcomes Framework[1] (2018), highlights the need to enhance quality of life for people with long-term conditions. The World Health organisation consider quality of life to be more than health related issues. They define it as the person’s physical health, psychological state, personal beliefs, social relationships, spiritual beliefs and their environment[2] .

There is a large body of evidence to suggest that social support has an effect on health outcomes. However, social support is a difficult concept to define and measure. There are different types of social support including emotional support, instrumental support (e.g. financial assistance), companionship support (e.g. shared social activities), and Informational support (e.g. advice or guidance)[3].
 
Literature review findings

This review found that the social impact of living with EB is far reaching, including: the effects on daily living, the financial burden, the impact on family, coping, stigma and social interactions. A number of studies highlighted the psychological and social impact of living with EB. One study concluded that there is a need to adopt a multidisciplinary approach to the management and support of patients with EB[4] and other literature supports the fact that more research about quality of life for patients with EB is needed in which they can bring their life experiences to bear on clinical decisions[5].

Other research has also found that that young people have reported that the social factors such as their visible differences was one of the social impacts of living with EB which was coming through strongly in their accounts[6]. The role of the family was also very important to the patient’s life by other researchers who concluded that physical, psychological and social aspects play an important role in EB and that a bio-psycho-social approach to EB management should be adopted[7].

​This review supports the position that social support does have an impact on quality of life. It is the researcher’s conclusion that a multi-disciplinary, bio-psycho-social approach to EB management and the perspectives of people living with the effects of EB are considered, and should be at the centre of professional practice.

​Read the full published article Epidermolysis Bullosa: how social support affects quality of life here.

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Acknowledgment
Thanks to DEBRA UK for funding this Literature Review.
Sondra Butterworth DEBRA EB Regional Community Support Manager

References
[1] The National Health Service Outcomes Framework[1] (2018
[2] Skevington SM, Lotfy M, O'Connel KA, WHOQOL Group, (2004).
[3] Sarason, I., Levine, H., & Basham, R., & Sarason, B (1983).
[4] Adni, Martin, & Mudge, (2012)
[5] Hubbard & Mayre-Chilton (2015),
[6] Williams, Gannon & Soon (2011)
[7] Margari et al., (2010)

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About Sondra Butterworth and her research
 Sondra is also  a Health and Social Care PhD student at the University of Chester UK. Sondra's research supervisors are Dr Andrew Mitchell and Professor Elizabeth Mason-Whitehead, and will be presenting her research at their Post Graduate Research conference.