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The psychosocial impact of a chronic disease in Ireland: Burdens and helpful practices for a life with epidermolysis bullosa.
- Source :
- Health Expectations; Jun2024, Vol. 27 Issue 3, p1-15, 15p
- Publication Year :
- 2024
-
Abstract
- Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]
- Subjects :
- CHRONIC diseases & psychology
COMMUNITY health services
MEDICAL care use
SOMATOFORM disorders
HEALTH services accessibility
PSYCHOTHERAPY
RESEARCH funding
HEALTH status indicators
ENDOWMENTS
SATISFACTION
EPIDERMOLYSIS bullosa
RARE diseases
DISEASE management
QUESTIONNAIRES
KRUSKAL-Wallis Test
BANDAGES & bandaging
MANN Whitney U Test
DESCRIPTIVE statistics
SEVERITY of illness index
THEMATIC analysis
FAMILY attitudes
PHYSICIAN practice patterns
RESEARCH methodology
QUALITY of life
PATIENT-professional relations
EXTENDED families
FACTOR analysis
QUALITY assurance
COMPARATIVE studies
DATA analysis software
SOCIAL support
INTERPERSONAL relations
SURGICAL dressings
DRUGS
PSYCHOSOCIAL factors
PHYSICAL mobility
MEDICAL care costs
NONPARAMETRIC statistics
PATIENTS' attitudes
Subjects
Details
- Language :
- English
- ISSN :
- 13696513
- Volume :
- 27
- Issue :
- 3
- Database :
- Complementary Index
- Journal :
- Health Expectations
- Publication Type :
- Academic Journal
- Accession number :
- 178131466
- Full Text :
- https://doi.org/10.1111/hex.14088