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Lymphoedema in a remote and rural area : an investigation into the prevalence of lymphoedema and its effect on daily living and quality of life in a remote and rural area in the far north of Scotland

Background to the study: The long term maintenance of lymphoedema depends on a daily regime of these physical therapies, which lend themselves to self-management by those with the condition (Lymphoedema Framework, 2006). It has been widely recognised in the literature for many years, e.g. Rose et al (1991) to Fu (2010), that achieving a reduction in volume of the lymphoedema and ensuring the ongoing maintenance of the condition is dependent upon knowledgeable healthcare professionals and patients, who are aware of the importance of self care and self management in the long term maintenance of the condition. The challenges for effective lymphoedema management may be exacerbated when the person lives in a very remote and rural area. It has been recognised by policymakers that sparsely populated and geographically remote areas need different healthcare solutions as many of the healthcare policies designed for urban areas are not applicable or sustainable in these areas (British Medical Association, 2005). Estimating the prevalence of the condition and considering the experience of a sample of people with lymphoedema who live in a very remote and rural area will contribute to the knowledge of the requirements for a lymphoedema service to be effective in such an area. Aims: To estimate the prevalence of lymphoedema/chronic oedema and to investigate the characteristics of the condition in a very remote and rural area of Scotland and to explore the experience of a sample of people living with the condition in that area. Methods: A mixed methods research strategy was used. An initial survey of GP practices was undertaken to estimate the prevalence of lymphoedema/chronic oedema and to generate a sample for the other two stages of the study. A postal questionnaire was used to collect quantitative and qualitative information from the initial sample, and to generate a smaller sample to participate in individual semi-structured qualitative interviews exploring the experience of living with and self-managing lymphoedema/chronic oedema in a very remote and rural area in the north of Scotland. Results: The estimated prevalence rate, based on GP report, was higher than that noted in prevalence studies in large urban areas. Based on questionnaire responses, 53% of participants stated their lymphoedema made no difference to how they felt about themselves. However, interviews revealed that frustration and anger was present despite acceptance of the situation; in particular, lack of information and effective treatment was a source of frustration. Many of the sample effectively self-managed their condition, based on their own commonsense experience. However, this resort to commonsense measures seemed to be as result of an apparent lack of awareness and intervention from health care professionals. Conclusions: The findings suggest that early recognition and even minimal support from a knowledgeable source at that early stage could help to maintain the lymphoedema and reduce the need for specialist treatments. Suggestions for the ways of improving early recognition of the condition and access to self-management support in a very remote and rural area are offered.

Identiferoai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:600068
Date January 2012
CreatorsShakespeare, Louise
ContributorsSkinner, Fiona
PublisherUniversity of the Highlands and Islands
Source SetsEthos UK
Detected LanguageEnglish
TypeElectronic Thesis or Dissertation
Sourcehttps://pure.uhi.ac.uk/portal/en/studentthesis/lymphoedema-in-a-remote-and-rural-area(86565f97-7da4-490a-9d74-a76d3d5a64e2).html

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