{"id":11401,"date":"2017-01-16T11:01:51","date_gmt":"2017-01-16T11:01:51","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=11401"},"modified":"2017-01-16T11:07:27","modified_gmt":"2017-01-16T11:07:27","slug":"narratives-of-parents-living-with-a-child-affected-by-cfsme","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/narratives-of-parents-living-with-a-child-affected-by-cfsme\/","title":{"rendered":"Narratives of parents living with a child affected by CFS\/ME"},"content":{"rendered":"

Research abstract:<\/strong><\/h3>\n

Background and Aims:<\/strong>
\nChronic Fatigue Syndrome\/Myalgic Encephalomyelitis (CFS\/ME) remains a\u00a0poorly understood condition, shrouded by debate, stigma, and\u00a0uncertainty. Unsurprisingly, the little available research suggests that\u00a0caring for a Child or Young Person (CYP) affected by the condition can\u00a0be extremely challenging.<\/p>\n

While the majority of available literature is\u00a0quantitative in nature, there is some qualitative research examining the\u00a0impact of having a CYP with CFS\/ME on parents. However, there currently\u00a0appear to be no studies examining the narratives of parents living with\u00a0a CYP with CFS\/ME. Therefore, this research aimed to hear how parents\u00a0narrate their experiences of living with a CYP affected by CFS\/ME,\u00a0paying attention to how they construct their identity, and the contested\u00a0condition.<\/p>\n

Methodology:<\/strong>
\nThis research drew on a qualitative approach that explored the\u00a0narratives of the participants. A purposive sample of five parents of\u00a0CYP affected by CFS\/ME (5 mothers) was recruited for a single semi-structured interview. The interviews were audio-recorded,\u00a0transcribed, and analysed using a narrative approach to explore what\u00a0participants said and how they narrated their accounts. This was then\u00a0situated within the social and cultural contexts that shaped them.<\/p>\n

Analysis and Findings:<\/strong>
\nMultiple readings of the narratives allowed me to develop a summary of\u00a0each individual’s narrative account. These were presented, after which\u00a0similarities and differences across narratives were considered. Analysis\u00a0identified six areas of collective focus: ‘stories of onset and\u00a0diagnosis’, ‘stories of battle’, ‘stories of finding the person\/people\u00a0who can help’, stories of impact’, ‘stories of seeking social support’,\u00a0and ‘stories of coping and adjustment’.<\/p>\n

Participants’ narratives were\u00a0heavily influenced by dominant societal discourses surrounding CFS\/ME\u00a0and motherhood, and could be seen as a response to these narratives.<\/p>\n

Consequently, participants offered particular constructions of the\u00a0condition, themselves, their CYP, and others that they had come into\u00a0contact with. These findings are discussed with reference to their\u00a0potential bearing for clinical practice, strengths and limitations of\u00a0 the methodology, and directions for future research.<\/p>\n

Narratives of parents living with a child affected by Chronic\u00a0Fatigue Syndrome\/Myalgic Encephalomyelitis<\/a>, by\u00a0\u00a0Rosalind Payne. Phd thesis University of Hertfordshire, June 2016 [Published 5 January 2016] Abstract<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Research abstract: Background and Aims: Chronic Fatigue Syndrome\/Myalgic Encephalomyelitis (CFS\/ME) remains a\u00a0poorly understood condition, shrouded by debate, stigma, and\u00a0uncertainty. Unsurprisingly, the little available research suggests that\u00a0caring for a Child or Young Person (CYP) affected by the condition can\u00a0be extremely challenging. … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":true,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[257,788,3439],"class_list":["post-11401","post","type-post","status-publish","format-standard","hentry","category-news","tag-children","tag-parents","tag-rosalind-payne"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-2XT","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/11401","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=11401"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/11401\/revisions"}],"predecessor-version":[{"id":11408,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/11401\/revisions\/11408"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=11401"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=11401"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=11401"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}