Abstract
BackgroundWe 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)MethodsWe 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.ResultsThirty 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.ConclusionsAlthough 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.
Highlights
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)
B) Primary research where researchers set out to assess needs of people with CFS/ME; or c) Primary research not designed to examine needs, but where expressed needs of people with CFS/ME were described. Expressed needs are those identified by people with CFS/ ME from their experience of living with this condition[2] 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]
We present a systematic review of both first hand accounts of the expressed needs of people with CFS/ME and researcher-mediated accounts of those needs reported in primary research
Summary
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). B) Primary research where researchers set out to assess needs of people with CFS/ME; or c) Primary research not designed to examine needs (e.g., designed to assess impact or experiences of living with CFS/ME), but where expressed needs of people with CFS/ME were described 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] 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]. The objective was to identify, appraise, select and synthesise what is known about the expressed needs of people with CFS/ME
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
