Patient Power and Participation

Study Aims

The aim of this PhD study is to explore the relationship between quality of life and social support for adults living with rare genetic skin conditions. Ultimately the hope is that this research study, will contribute to a better understanding of the psycho-social needs of the rare disease community, leading to an improvement of care and support which is both person-centred and empowering. This study included an on-line survey and semi-structured interviews of adults living with rare genetic skin and connective tissue conditions. The initial findings of this study indicated that there is a positive correlation between the perceived quality of life and social support for the participants in the study. This has implications for health and social care practice.

“I do think there needs to be additional support, especially when people are newly diagnosed.”

Interview Participant July 2019 Study

A key finding of this study indicated that the participants reported that their family appeared to provide most of the social support (53%) whereas very little support was provided by social care professionals (1%).One emerging theme is related to the participants interactions with health and social care services, and their feelings of helplessness and lack of support. 

Graph 1: On-line survey responses of 31 adult participants 
Groups who provide the highest and lowest percentage of social support overall. 

“I had pictures taken for research purposes, that helped a bit, but it’s very hard that there’s just nothing out there and no support really.”

Interview Participant July 2019

Participation through Empowerment 

The World Health Organisation defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health”. (Health promotion glossary. Geneva: World Health Organization; 1998.) There has been a significant paradigm shift in in health, social care, research and industry, with each community of practice advocating the importance of patient and public involvement.  

The various calls for patient participation and engagement should also include details of the psycho-social support systems which will be put in place. Practical considerations such as, travel costs, care arrangements, wheelchair access to buildings or any emotional support that might be required may influence the decision to participate in any initiative. 

Author: Sondra Butterworth
Author: Sondra Butterworth
RareQoL Founder Director &
Community Psychology Specialist

The initial findings of this study suggest that there is a lack of psycho-social support for the rare disease community, which could enable them to engage in initiatives designed to empower them.  

We would like to thank Sondra for sharing with us. If you’d like to know more about Sondra and her work, you can find her on LinkedIn.

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