Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study

Authors: Effah, A., Ersser, S.J. and Hemingway, A.

Journal: International Journal of Dermatology

Volume: 56

Issue: 12

Pages: 1432-1437

eISSN: 1365-4632

ISSN: 0011-9059

DOI: 10.1111/ijd.13785

Abstract:

Introduction/Background: Mycobacterium ulcerans (also known as Buruli ulcer) disease is a rare skin disease which is prevalent in rural communities in the tropics mostly in Africa. Mortality rate is low, yet morbidity and consequent disabilities affect the quality of life of sufferers. Aims: The aim of this paper is to use the grounded theory method to explore the support needs of people living with the consequences of Buruli ulcer in an endemic rural community in Ghana. Methods: We used the grounded theory research approach to explore the experiences of people living with Mycobacterium ulcerans in a rural district in Ghana and provide a basis to understand the support needs of this group. Results: The key support needs identified were: functional limitations, fear and frequency of disease recurrence, contracture of limbs and legs, loss of sensation and numbness in the affected body area, lack of information from health professionals about self-care, feeling tired all the time, insomnia, lack of good diet, lack of access to prostheses, having to walk long distances to access health services, and loss of educational opportunities. Discussions: The study discusses how the systematically derived qualitative data has helped to provide a unique insight and advance our understanding of the support needs of people living with BU and how they live and attempt to adapt their lives with disability. We discuss how the availability of appropriate interventions and equipment could help them self-manage their condition and improve access to skin care services. Conclusions: The support needs of this vulnerable group were identified from a detailed analysis of how those living with BU coped with their lives. A key issue is the lack of education to assist self-management and prevent deterioration. Further research into the evaluation of interventions to address these support needs is necessary including self-management strategies.

http://eprints.bournemouth.ac.uk/29678/

Source: Scopus

Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study.

Authors: Effah, A., Ersser, S.J. and Hemingway, A.

Journal: Int J Dermatol

Volume: 56

Issue: 12

Pages: 1432-1437

eISSN: 1365-4632

DOI: 10.1111/ijd.13785

Abstract:

INTRODUCTION/BACKGROUND: Mycobacterium ulcerans (also known as Buruli ulcer) disease is a rare skin disease which is prevalent in rural communities in the tropics mostly in Africa. Mortality rate is low, yet morbidity and consequent disabilities affect the quality of life of sufferers. AIMS: The aim of this paper is to use the grounded theory method to explore the support needs of people living with the consequences of Buruli ulcer in an endemic rural community in Ghana. METHODS: We used the grounded theory research approach to explore the experiences of people living with Mycobacterium ulcerans in a rural district in Ghana and provide a basis to understand the support needs of this group. RESULTS: The key support needs identified were: functional limitations, fear and frequency of disease recurrence, contracture of limbs and legs, loss of sensation and numbness in the affected body area, lack of information from health professionals about self-care, feeling tired all the time, insomnia, lack of good diet, lack of access to prostheses, having to walk long distances to access health services, and loss of educational opportunities. DISCUSSIONS: The study discusses how the systematically derived qualitative data has helped to provide a unique insight and advance our understanding of the support needs of people living with BU and how they live and attempt to adapt their lives with disability. We discuss how the availability of appropriate interventions and equipment could help them self-manage their condition and improve access to skin care services. CONCLUSIONS: The support needs of this vulnerable group were identified from a detailed analysis of how those living with BU coped with their lives. A key issue is the lack of education to assist self-management and prevent deterioration. Further research into the evaluation of interventions to address these support needs is necessary including self-management strategies.

http://eprints.bournemouth.ac.uk/29678/

Source: PubMed

Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study

Authors: Effah, A., Ersser, S.J. and Hemingway, A.

Journal: INTERNATIONAL JOURNAL OF DERMATOLOGY

Volume: 56

Issue: 12

Pages: 1432-1437

eISSN: 1365-4632

ISSN: 0011-9059

DOI: 10.1111/ijd.13785

http://eprints.bournemouth.ac.uk/29678/

Source: Web of Science (Lite)

Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study

Authors: Effah, A., Ersser, S. and Hemingway, A.

Journal: International Journal of Dermatology

Publisher: Blackwell Publishing Inc.

ISSN: 0011-9059

DOI: 10.1111/ijd.13785

Abstract:

Mycobacterium Ulcerans (also known as Buruli ulcer) disease is a rare tropical skin disease which causes contracture and severe scarring and thus affect the functional activities of people who suffer from it as well as their quality of life. An assessment of the effects of BU on patients’ quality of life helps health professionals to meet the needs of such patients. Therefore the aim of this paper is to assess the quality of life of people living with the consequences of Buruli ulcer (BU).

Methods This was a combination of an ethnographic in-depth study based on the grounded theory method, Dermatology Life Quality Index (DLQI) tool and functional limitation scores to assess the quality of life of people living with the consequences of BU. Findings The overall finding was that BU affects the quality of life of the participants in all the domains of the DLQI and the areas most affected were symptoms and feelings, leisure and personal relationships Conclusion The quality of life of this vulnerable group was identified from detailed analysis of the qualitative data, functional limitation scores and the Dermatology Life Quality Index (DLQI) tool. People living with the consequences of BU have low quality of life. Efforts should be made to include this in the overall assessment and treatment of these patients.

http://eprints.bournemouth.ac.uk/29678/

Source: Manual

Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study.

Authors: Effah, A., Ersser, S.J. and Hemingway, A.

Journal: International journal of dermatology

Volume: 56

Issue: 12

Pages: 1432-1437

eISSN: 1365-4632

ISSN: 0011-9059

DOI: 10.1111/ijd.13785

Abstract:

Mycobacterium ulcerans (also known as Buruli ulcer) disease is a rare skin disease which is prevalent in rural communities in the tropics mostly in Africa. Mortality rate is low, yet morbidity and consequent disabilities affect the quality of life of sufferers.The aim of this paper is to use the grounded theory method to explore the support needs of people living with the consequences of Buruli ulcer in an endemic rural community in Ghana.We used the grounded theory research approach to explore the experiences of people living with Mycobacterium ulcerans in a rural district in Ghana and provide a basis to understand the support needs of this group.The key support needs identified were: functional limitations, fear and frequency of disease recurrence, contracture of limbs and legs, loss of sensation and numbness in the affected body area, lack of information from health professionals about self-care, feeling tired all the time, insomnia, lack of good diet, lack of access to prostheses, having to walk long distances to access health services, and loss of educational opportunities.The study discusses how the systematically derived qualitative data has helped to provide a unique insight and advance our understanding of the support needs of people living with BU and how they live and attempt to adapt their lives with disability. We discuss how the availability of appropriate interventions and equipment could help them self-manage their condition and improve access to skin care services.The support needs of this vulnerable group were identified from a detailed analysis of how those living with BU coped with their lives. A key issue is the lack of education to assist self-management and prevent deterioration. Further research into the evaluation of interventions to address these support needs is necessary including self-management strategies.

http://eprints.bournemouth.ac.uk/29678/

Source: Europe PubMed Central

Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study

Authors: Effah, S., Ersser, S.J. and Hemingway, A.

Journal: International Journal of Dermatology

Volume: 56

Issue: 12

Pages: 1432-1437

ISSN: 0011-9059

Abstract:

Mycobacterium Ulcerans (also known as Buruli ulcer) disease is a rare tropical skin disease which causes contracture and severe scarring and thus affect the functional activities of people who suffer from it as well as their quality of life. An assessment of the effects of BU on patients’ quality of life helps health professionals to meet the needs of such patients. Therefore the aim of this paper is to assess the quality of life of people living with the consequences of Buruli ulcer (BU). Methods This was a combination of an ethnographic in-depth study based on the grounded theory method, Dermatology Life Quality Index (DLQI) tool and functional limitation scores to assess the quality of life of people living with the consequences of BU. Findings The overall finding was that BU affects the quality of life of the participants in all the domains of the DLQI and the areas most affected were symptoms and feelings, leisure and personal relationships Conclusion The quality of life of this vulnerable group was identified from detailed analysis of the qualitative data, functional limitation scores and the Dermatology Life Quality Index (DLQI) tool. People living with the consequences of BU have low quality of life. Efforts should be made to include this in the overall assessment and treatment of these patients.

http://eprints.bournemouth.ac.uk/29678/

Source: BURO EPrints