What are the support needs of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)? A meta-ethnography of qualitative studies

Conference:

SAPC ASM 2018 - London

Talk Code:

P2.57

Presenter:

Dr Chinonso Igwesi-Chidobe

Twitter:

@noamyks

Co-authors:

Carolyn Chew-Graham, Damien Ridge, Paul Little, Opeyemi Babatunde, Nadia Corp, Karen Pilkington

Author institutions:

Research Institute for Primary Care and Health Sciences Keele University and University of Nigeria, Research Institute for Primary Care and Health Sciences Keele University, University of Westminster, University of Southampton, Keele University, Keele University, University of Portsmouth

Problem

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is a multifactorial disorder characterised by a range of symptoms including persistent, unexplained fatigue, worse after activity and unrelieved by rest; sleep disturbance, muscle pain, headache, and poor concentration.Evidence-based guidelines (NICE 53) suggest effective management and treatment options, but the literature suggests that these may not be acceptable to patients and that people with CFS/ME value support to manage their condition. There is limited understanding of what this support should be.This study aims to investigate the ways in which people with CFS/ME understand, perceive and prefer formal (from professionals) and informal (from significant others) support.

Approach

The study has been informed by a PPIE group, from development of the research question, obtaining funding, design, definition of support, to interpretation of findings. We systematically searched for qualitative studies on databases including MEDLINE, EMBASE, AMED, CINAHL-P, PsycINFO, ASSIA, Sociological Abstracts, Web of Science, Social Care Online and British Library EthoS database, up to October 30, 2017. After de-duplication of search results in Endnote, records were imported into Abstrackr. Two researchers independently screened titles and abstracts to select studies that appeared to meet the inclusion criteria. Potentially eligible studies were obtained as full-text and assessed. Assessments were compared, and disagreements resolved by discussion; the other review team members arbitrated where agreement could not be reached. Quality assessment is being carried out at the same time as data extraction by two reviewers, using the Joanna Briggs Institute (JBI) QARI Critical Appraisal Checklist for Interpretive & Critical Research. Studies are being synthesized using Noblit and Hare’s seven-step meta-ethnography. For the first, and second order analysis, the two reviewers are critically appraising and identifying recurring concepts from patient quotes, and primary author interpretations respectively. Third order constructs will be identified iteratively via whole team analytical sessions.Protocol registration number: PROSPERO (CRD42017081418).

Findings

The search resulted in 7418 unique citations. 137 manuscripts were obtained and reviewed in full text, and 43 qualitative studies were eligible for inclusion in the meta-ethnography. The scope of the studies included the context of the clinical consultation, family and social aspects of support, and the importance of place and settings. Negative and positive polarities of support were analysed.

Consequences

The results of this study will inform clinician understanding of the support required for people with CFS/ME, health and social policy for the commissioning of services for people living with CFS/ME, and the role played by broader support networks.

Submitted by:

Chinonso Igwesi-Chidobe

Funding acknowledgement:

This study is funded by NIHR SPCR Grant Reference Number: 370. The views and opinions expressed in this report are those of the authors and do not necessarily reflect those of the NIHR, the NHS or the Department of Health. The NIHR and Department of Health had no role in study design, the collection, analysis and interpretation of data, the writing of the abstract.