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RARE INSIGHTS

Making our RARE voices heard

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

26/6/2019

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RESEARCH

Navigating Quality of Life and Social Support

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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.

Taking part in the survey

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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


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.

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)

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.
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Why we’re helping people with albinism to stand strong

10/6/2019

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GUEST BLOG
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The prejudice and struggles facing people with albinism are sadly as present as ever in 2019…
Roselle Potts, Chair of the Albinism Fellowship www.albinism.org.uk
As a rare genetic condition that affects people’s eyesight and gives them distinctive pale hair and skin, albinism brings its own specific challenges.
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Society has rightly moved forward in terms of recognising the rights of people with disabilities in the last few years. And there has been greater effort made to acknowledge the special problems experienced by people with albinism from ethnic minority backgrounds, including by the Albinism Fellowship. But more still need to be done.

It is true that our members in the UK and Republic of Ireland don’t suffer the extreme prejudice and live with the risk to their lives that people with albinism in parts of Africa must face. But life can still be a daily struggle.

For parents with a newly diagnosed child with albinism it can be difficult to access the correct support from the NHS.
Since albinism is such a rare condition – we estimate just 3,000 people live with it in the UK and Ireland – it may not even be diagnosed correctly.

And if parents do get the right diagnosis, they may still hear urban myths such as “you’ll never be able to take your child on holiday in the sunshine” (simply untrue, but parents need to travel prepared with shades, Factor 50 sun cream and a wide brimmed hat) or “they will never be good at sport.”

This is where the Albinism Fellowship comes in; as a positive and sociable volunteer run charity we are the only national charity in the UK and Ireland that exists to support people with albinism and their families. We are planning to launch our new website on 13 June 2019, at www.albinism.org.uk. Here, people can find out how to join the Albinism Fellowship and obtain a useful booklet called ‘Understanding Albinism’.
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When the child with albinism starts at their local primary school, there may be a lack of availability of magnifiers to help them see textbooks. Or no teaching assistants available.

While we hear encouraging stories of fantastic teachers and schools supporting kids with albinism, we also still hear disturbing stories of teachers simply not understanding albinism. Or being willing to provide extra support.

Since this is 2019, this factor is simply not acceptable in a developed country like the UK – imagine the sheer distress the child and his or her parents experience as a result. At our Adult and Family Weekend Conference being held from 18-20 October 2019, we will have expert speakers on education rights and mobility as well as loads of fun activities for children and teens with albinism and their siblings.

Adults with albinism experience their own battles throughout their own lives, too. This can be misunderstanding of their condition, prejudice or the lack of access to the same career opportunities that their fully sighted peers would enjoy.

We will be hosting bespoke sessions again for adults with albinism including discussion groups during our conference this October. This will be a brilliant weekend with the theme ‘This is Me!’ to encourage all people with albinism to be confident in who they are.

The Albinism Fellowship will continue to help people with albinism “still stand strong” – in keeping with the theme of this year’s International Albinism Awareness Day.
  • On International Albinism Awareness Day, Thursday 13 June 2019, please use social media to show your support to people with albinism around the world. Use the hashtags #IAAD and #IAAD2019 and tag the Albinism Fellowship (@Albinism) and we can share your messages across our networks
  • In conjunction with International Albinism Awareness Day, the Albinism Fellowship’s summer barbecue and get-together will be in Carshalton, Surrey on Saturday, 15 June from 11.30am-3pm. The event gives people with albinism and their families the chance to socialise, catch-up with news from the Albinism Fellowship and enjoy some tasty food. This year, the summer event is at a new venue, the Church of the Good Shepherd, a short walk from Carshalton Beeches railway station. People attending should bring their own food for the barbecue. Attendance is free, but please confirm first with chair@albinism.org.uk​ ​

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