Charles Shepherd's post to co-cure of Dec 12/09
This systematic review is part of the (UK) ME Observatory research portfolio
The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review
Maria de Lourdes Drachler1 email, Jose Carlos de Carvalho Leite1 email, Lee Hooper2 email, Chia Swee Hong1 email, Derek Pheby3 email, Luis Nacul4 email, Eliana Lacerda4 email, Peter Campion5 email, Anne Killett1 email, Maggie McArthur1 email and Fiona Poland1 email
1 School of Allied Health Professions, University of East Anglia, Norwich, NR4 7TJ, UK
2 School of Medicine, Health Policy and Practice, University of East Anglia, Norwich, NR4 7TJ, UK
3 Plaishetts House, Hadspen, Castle Carey, BA7 7LR, UK
4 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK
5 Hull and East Yorkshire Medical Research and Teaching Centre, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ, UK
BMC Public Health 2009, 9:458doi:10.1186/1471-2458-9-458
Received: 24 July 2009
Accepted: 11 December 2009
Published: 11 December 2009
2009 Drachler et al; licensee BioMed Central Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
Background
We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
Methods
We carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.
Results
Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.
Conclusions
Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.
------------------------------------full article>
Background
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an idiopathic, long term, multi-faceted, potentially disabling and life-disrupting illness. Its prevalence is at least 0.2-0.4% in the UK[1] There is no specific diagnostic test, and treatment is based on symptom management, aiming to sustain or extend capacity.
Expressed needs are those identified by people with CFS/ME from their experience of living with this condition (as opposed to normative needs, identified by others)[2] Although in-depth understanding of the perspective of service users is fundamental for evidence based policy and practice, insufficient information exists on the expressed needs of people with CFS/ME [1]. Little has been done to draw together the existing data on these expressed needs to support them in managing their illness and maintaining social participation.
We present a systematic review of both first hand accounts of the expressed needs of people with CFS/ME (reported in their narratives of own stories) and researcher-mediated accounts of those needs reported in primary research. The objective was to identify, appraise, select and synthesise what is known about the expressed needs of people with CFS/ME.
.............
Discussion and Conclusion
Exploring the commonalities and relationship between the themes raised in the reviewed papers has highlighted several interrelated aspects of the needs of people with CFS/ME in regaining well-being and control over their lives -
making sense of the illness,
aligning perspectives,
managing the illness,
appraising needs and
developing strategies for social inclusion and control.
This review has also identified that many psychological and physical demands can be made on people with CFS/ME and that
major needs may be largely unmet due to poor recognition of CFS/ME as an illness or of its impact.
The review has shown that
the lack of recognition of needs and poor support from the health and social systems further compromise socioeconomic status, activities of daily living, social participation and personal development,
thereby exacerbating the impact of the illness in their lives.
This systematic review is part of the (UK) ME Observatory research portfolio
The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review
Maria de Lourdes Drachler1 email, Jose Carlos de Carvalho Leite1 email, Lee Hooper2 email, Chia Swee Hong1 email, Derek Pheby3 email, Luis Nacul4 email, Eliana Lacerda4 email, Peter Campion5 email, Anne Killett1 email, Maggie McArthur1 email and Fiona Poland1 email
1 School of Allied Health Professions, University of East Anglia, Norwich, NR4 7TJ, UK
2 School of Medicine, Health Policy and Practice, University of East Anglia, Norwich, NR4 7TJ, UK
3 Plaishetts House, Hadspen, Castle Carey, BA7 7LR, UK
4 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK
5 Hull and East Yorkshire Medical Research and Teaching Centre, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ, UK
BMC Public Health 2009, 9:458doi:10.1186/1471-2458-9-458
Received: 24 July 2009
Accepted: 11 December 2009
Published: 11 December 2009
2009 Drachler et al; licensee BioMed Central Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
Background
We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
Methods
We carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.
Results
Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.
Conclusions
Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.
------------------------------------full article>
Background
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an idiopathic, long term, multi-faceted, potentially disabling and life-disrupting illness. Its prevalence is at least 0.2-0.4% in the UK[1] There is no specific diagnostic test, and treatment is based on symptom management, aiming to sustain or extend capacity.
Expressed needs are those identified by people with CFS/ME from their experience of living with this condition (as opposed to normative needs, identified by others)[2] Although in-depth understanding of the perspective of service users is fundamental for evidence based policy and practice, insufficient information exists on the expressed needs of people with CFS/ME [1]. Little has been done to draw together the existing data on these expressed needs to support them in managing their illness and maintaining social participation.
We present a systematic review of both first hand accounts of the expressed needs of people with CFS/ME (reported in their narratives of own stories) and researcher-mediated accounts of those needs reported in primary research. The objective was to identify, appraise, select and synthesise what is known about the expressed needs of people with CFS/ME.
.............
Discussion and Conclusion
Exploring the commonalities and relationship between the themes raised in the reviewed papers has highlighted several interrelated aspects of the needs of people with CFS/ME in regaining well-being and control over their lives -
making sense of the illness,
aligning perspectives,
managing the illness,
appraising needs and
developing strategies for social inclusion and control.
This review has also identified that many psychological and physical demands can be made on people with CFS/ME and that
major needs may be largely unmet due to poor recognition of CFS/ME as an illness or of its impact.
The review has shown that
the lack of recognition of needs and poor support from the health and social systems further compromise socioeconomic status, activities of daily living, social participation and personal development,
thereby exacerbating the impact of the illness in their lives.
