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The Role of Social Support in Helping People with EDS Manage Their Condition
Appleby, Kate
Appleby, Kate
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2016
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Abstract
The Ehlers-Danlos syndromes (EDS) are complicated, multisystemic
disorders that can impact almost every aspect of an individual’s life and
severely affect functioning. Research into optimal long-term management of
EDS is still sparse and recommended medical treatments are largely based
upon the clinical opinions of healthcare providers. Social support is linked to
coping with adversities such as chronic health conditions, and has a
relationship with health-related quality of life. This qualitative study examined
the role of support in optimal management of EDS. Five participants with EDS
were interviewed, and thematic analysis was carried out. Four themes relating
to disparate sources of support emerged: community incorporated personal or
face-to-face support (e.g. spouse, family, friends, and peers). Medical support
included specific professionals and types of care available to people with EDS.
The role of self-support included and focused on resilience and how support
helps development of resilience. The results of this study suggest that external
support can facilitate the development of resilient behaviours and attitudes in
individuals with EDS, which enable better management of their condition.
Interventions that incorporate appropriate, multidisciplinary, medical care with
the goals of improving individuals’ access to support, such as information and
peer support, could enable better management of EDS. Optimal management
of EDS is likely to result in better HrQoL and reduce healthcare-related
expenditure associated with treatment of EDS.
Citation
Appleby, K. (2016). The Role of Social Support in Helping People with EDS Manage Their Condition (Master's thesis). University of Chester, United Kingdom.
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University of Chester
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Thesis or dissertation
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en