Abstract
Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’ A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.
Subject
Health Information Management,Health Informatics,Health Policy,Leadership and Management
Reference12 articles.
1. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care
2. Report to the Chief Medical Officer of an Independent Working Group,2002
3. ME/CFS Research Funding: An Overview of Activity by Major Institutional Funders Included on the Dimensions Database. Action for MEhttps:/www.actionforme.org.uk/uploads/pdfs/mecfs-research-funding-report-2016.pdf
4. Special Issue: ME/CFS—The Severely and very Severely Affectedwww.mdpi.com/journal/healthcare/special_issue/me_cfs_issue
5. Pathways Through Participation. Briefing Paper No. 3—Who Participates? The Actors of Participation?http://pathwaysthroughparticipation.org.uk/wp-content/uploads/2009/09/Briefing-paper-3-Who-participates1.pdf
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