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PURPOSE: To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach. RESULTS: The overarching theme, "An uncertain uphill battle against a divergent body and societal ignorance", covers the experiences of living with lipedema and is based on five categories; "Captivated by a disintegrating body", "Face the impairments of a chronic condition", "Experience social exclusion", "Need emotional support to go on" and "Mull over an insecure future". The women felt entrapped within their bodies and experienced social exclusion due to the chronic symptoms and the progressive body shape alteration caused by their illness. Having experienced deficient information on the illness, varying support from other people, and a deteriorating economic situation, the women face an uncertain future. CONCLUSIONS: Symptoms and restrictions caused by lipedema affect women's livelihood and future, as there are no indications for disease improvement. Preventive work aimed at reducing health deterioration should be a priority. More research is needed to raise healthcare awareness regarding difficulties experienced by patients with lipedema.
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Objectives To identify research priorities related to the diagnosis, treatment and management of lipoedema. Design This was a research question priority-setting that ensured the involvement of patients, relatives and healthcare professionals in all parts. It consisted of the following steps: identifying research questions through an open survey, seeking input from patients, patient relatives and healthcare professionals. Prioritisation, including a Delphi exercise and a final priority-setting meeting. Setting Swedish healthcare and community. Participants A total of 255 participants submitted research questions. 130 participated in the prioritisation of the submitted questions. Of these, 89 were patients, 10 were relatives, 19 were healthcare professionals and 12 were representatives of patient organisations. Results 1314 potential research questions were submitted; 62 unique questions remained after analysis. 130 and 123 people answered the first and second Delphi surveys, respectively. 20 questions were discussed by 13 participants at the final priority-setting meeting. The following five research questions were selected as a top priority: (1) what criteria should apply for a diagnosis of lipoedema? (2) What outcomes are important in lipoedema research? (3) What effect does manual treatment, such as manual lymphatic drainage have on lipoedema? (4) What effect does liposuction have on lipoedema? (5) What are the effects of hormonal treatment on lipoedema? Conclusions We found a consensus between patients and healthcare professionals on topics that warrant priority in future research into lipoedema. The questions reflect both the diagnosis of the condition and research on treatment effects. We hope the results will inform researchers and research funders, and direct future studies towards important research questions. Data are available upon reasonable request.
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- Lipedema (1)
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