This scoping review aims to provide an overview of available research on the functioning of a patient with lipedema, according to the ICF framework in terms of body functions, body structures, activities, participation, personal and environmental factors.
MULTIFILE
Background: The cause of lipoedema remains unclear, and the condition is currently incurable. Effective self-management is therefore essential for coping with its physical and psychological impacts and the necessary lifestyle adjustments. This study aimed to assess the needs, barriers, and facilitators for enhancing self-management and self-management support from the perspectives of people with lipoedema and the healthcare professionals (HCPs) involved in their care. Methods: The study used a mixed-methods approach, incorporating a narrative review focused on people with chronic conditions and their HCPs, along with focus groups involving people diagnosed with lipoedema and the HCPs involved in their care. The Core Processes of the Intervention Mapping method guided a systematic approach to address the study’s objectives. Qualitative data were analyzed using a grounded theory approach. Results: Findings revealed unique self-management barriers for people with lipoedema, including limited awareness and expertise among HCPs, as well as stigmatization from both HCPs and society. Participants identified a need for tailored lifestyle plans, guidance, and support for monitoring progress. Key facilitators included self-management skills, supportive networks, and role models. HCPs noted barriers in communication and collaboration due to a lack of specialized professionals and negative attitudes toward lipoedema. They expressed a need for multidisciplinary/interprofessional teams, accurate diagnosis, patient openness, and reliable information resources. Facilitators included fostering trust, encouraging patient participation, and setting achievable goals. Conclusion: This study underscores the need for tailored self-management interventions for people with lipoedema. The adaptation of existing self-management strategies from other chronic conditions should take into account the specific needs, barriers, and facilitators of people with lipoedema and their HCPs.
DOCUMENT
Purpose: The aim of this study was to explore the functioning of people with lipoedema from their perspective. Methods: This was a qualitative study following a phenomenological perspective using individual in-depth interviews with a convenience sample of 13 Dutch people with lipoedema. The data were analysed by using an interpretative phenomenological approach. Results: Two overarching group experiential themes (GETs) were identified: (1) “physical complaints are only a part of their problems”, and (2) “longing for improved appearance and functioning”. The GETs were composed of the following subordinate GETs: “disproportionate functioning of the lower body”, “navigating daily life with lipoedema”, “coping with uncertainty”, “the toll of shame and stigmatization”, “consequences of a very negative self-image”, “desire for change and improved appearance and functioning”, and “an ongoing journey of acceptance”. Conclusions: Participants experience that physical complaints affect daily activities, but with adequate adaptability, participation issues are relatively limited. Instead, shame about their appearance and (fear of) stigmatization mainly leads to social avoidance. Additionally, participants long for freedom to do what they want, wear what they want, and desire a different appearance. Therefore, the experienced level of acceptance of the condition is context- and situation-dependent and not straightforward, which is complicated by the burden of knowing that the condition is chronic.
DOCUMENT
