Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice

BMC Family Practice

Research Article

Luis Nacul¹  Peter D Campion²  Derek Pheby³  Maria de Lourdes Drachler⁴  Simon MC Horton⁴  Swati Kale⁴  Fiona Poland⁴  Jose Carlos de Carvalho Leite⁴  Maggie A McArthur⁴ 

[1] Department of Nutrition and Public Health Intervention Research, London School of Hygiene and Tropical Medicine, Keppel Street, WC1E 7HT, London, UK;Department of Primary Care Research, University of Hull, Castle Hill Hospital, Castle Road, HU16 5JP, Hull, UK;Faculty of Society and Health, Buckinghamshire New University, Uxbridge Campus, 106 Oxford Road, UB8 1NA, Uxbridge, Middlesex, UK;School of Allied Health Professions, University of East Anglia, NR4 7TJ, Norwich, UK;

关键词: Specialist Service;    Cognitive Behavioural Therapy;    Health Care Practitioner;    Social Care Professional;    Primary Care Management;   

DOI  :  10.1186/1471-2296-11-89

 received in 2010-08-10, accepted in 2010-11-15,  发布年份 2010

来源: Springer

【 摘 要 】

BackgroundChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can cause profound and prolonged illness and disability, and poses significant problems of uncertainty for healthcare professionals in its diagnosis and management. The aim of this qualitative study was to explore the nature of professional 'best practice' in working with people with CFS/ME.MethodsThe views and experiences of health care practitioners (HCPs) were sought, who had been judged by people with CFS/ME themselves to have been particularly helpful and effective. Qualitative semi-structured interviews following a topic guide were carried out with six health care practitioners. Interviews were audio-recorded, transcribed and subject to thematic analysis.ResultsFive main themes were developed: 1) Diagnosis; 2) Professional perspectives on living with CFS/ME; 3) Interventions for treatment and management; 4) Professional values and support for people with CFS/ME and their families; 5) Health professional roles and working practices. Key findings related to: the diagnostic process, especially the degree of uncertainty which may be shared by primary care physicians and patients alike; the continued denial in some quarters of the existence of CFS/ME as a condition; the variability, complexity, and serious impact of the condition on life and living; the onus on the person with CFS/ME to manage their condition, supported by HCPs; the wealth of often conflicting and confusing information on the condition and options for treatment; and the vital role of extended listening and trustful relationships with patients.ConclusionsWhile professional frustrations were clearly expressed about the variability of services both in primary and specialist care and continuing equivocal attitudes to CFS/ME as a condition, there were also strong positive messages for people with CFS/ME where the right services are in place. Many of the findings from these practitioners seen by their patients as helping them more effectively, accord with the existing literature identifying the particular importance of listening skills, respect and trust for establishing a therapeutic relationship which recognises key features of the patient trajectory and promotes effective person-centred management of this complex condition. These findings indicate the need to build such skills and knowledge more systematically into professional training informed by the experience of specialist services and those living with the condition.

【 授权许可】

CC BY   
© Horton et al; licensee BioMed Central Ltd. 2010