title: Distress in significant others of patients with chronic fatigue syndrome: A systematic review of the literature.
abstract: OBJECTIVE
  The objective of this study was to systematically review existing empirical research assessing levels and correlates of distress in significant others of patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
  
  
  METHODS
  Systematic searches in CINAHL, Web of Science and PsycINFO were conducted in August 2014. The search was repeated in January 2015 to check for newly published articles. Studies published in English with quantitative, qualitative, or mixed designs exploring distress, poor subjective health, poor mental health, reduced quality of life and well-being, and symptoms of depression and anxiety in significant others (>18 years) of children and adults with CFS/ME were included. Quality appraisal of included studies was carried out. Quantitative and qualitative studies were summarized separately.
  
  
  RESULTS
  Six articles met eligibility criteria. Two quantitative studies with significant others of adult patients, and one quantitative and two mixed-methods studies with significant others of child patients showed moderate to high levels of distress. One qualitative study (adult patients) found minimal evidence of distress and that acceptance of CFS/ME was related to better adjustment. In the quantitative and mixed-methods studies, significant others who attributed some level of responsibility for symptoms to the patient, or who were female, or whose partners had poorer mental health, had higher levels of distress.
  
  
  CONCLUSIONS
  The small number of studies to date, the contrary evidence from a qualitative study, and the limited data available on levels of distress in significant others of patients with CFS/ME mean that our conclusion that distress levels are elevated is provisional. We recommend that future qualitative studies focus on this particular topic. Further longitudinal studies exploring correlates of distress within the context of a predictive theoretical model would be helpful. Statement of contribution What is already known on this subject? Chronic fatigue syndrome (CFS/ME) entails considerable economic, social, and personal costs. Uncertainties exist around diagnosis and management. This may lead to particular difficulties for significant others trying to support patients. What does this study add? Few studies have examined distress and its correlates in significant others of people with CFS/ME. Significant others report elevated levels of distress on quantitative measures.
authors.affiliation: School of Psychological Sciences and Manchester Centre for Health Psychology, University of Manchester, UK. kamelia.harris@manchester.ac.uk.
authors.forename: Kamelia
authors.identifier: http://orcid.org/0000-0003-2806-1262
authors.initials: K
authors.lastname: Harris
authors.affiliation: Centre for Applications of Health Psychology, University of Southampton, UK.
authors.forename: Rebecca J
authors.initials: RJ
authors.lastname: Band
authors.affiliation: School of Psychological Sciences and Manchester Centre for Health Psychology, University of Manchester, UK.
authors.forename: Hazel
authors.initials: H
authors.lastname: Cooper
authors.affiliation: School of Psychological Sciences and Manchester Centre for Health Psychology, University of Manchester, UK.
authors.forename: Vanessa G
authors.initials: VG
authors.lastname: Macintyre
authors.affiliation: Institute for Scientific Research and High Technology Services, City of Knowledge, Clayton, Panama.
authors.forename: Anilena
authors.initials: A
authors.lastname: Mejia
authors.affiliation: School of Psychological Sciences and Manchester Centre for Health Psychology, University of Manchester, UK.
authors.forename: Alison J
authors.initials: AJ
authors.lastname: Wearden
mesh_terms: D001007:Anxiety / Q000523:psychology*; D003863:Depression / Q000523:psychology*; D015673:Fatigue Syndrome, Chronic; D033062:Friends / Q000523:psychology*; D006801:Humans; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology*
keywords: carer distress; chronic fatigue; chronic fatigue syndrome; myalgic encephalomyelitis; systematic review