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What do parents of children with dysphagia think about their MDT? A qualitative study.

Abstract：

OBJECTIVES:To seek the experiences and perspectives of parents caring for children with dysphagia, with emphasis on their experiences of working within their child's multidisciplinary team (MDT). SETTING:This research was completed in community settings, within families' homes across the UK. PARTICIPANTS:14 families self-selected to participate in the study. Criteria specified that participants must care for a child under the age of 18 and to decrease ambiguity the term 'diagnosis of dysphagia' was defined as the need for modified (thickened) fluids. EXCLUSION CRITERIA:caring for an adult over the age of 18; diet and fluid modifications for reasons other than dysphagia (eg, for symptomatic treatment of gastro-oesophageal reflux disease. Participants were interviewed within their homes using a semistructured questionnaire and data was analysed using a descriptive phenomenological approach through use of thematic coding and constant comparison. Themes and relationships were inductively generated from the data. RESULTS:Participants universally expressed a desire to be involved with their child's MDT; this study identified the following facilitators and barriers to collaboration: accessing services, professional knowledge and professional skillset. Participants described three means of responding to these barriers: reacting emotionally, seeking solutions and making decisions. CONCLUSIONS:This study recorded in-depth reports of participants' experiences of working with healthcare providers. Despite government-driven efforts towards person-centred healthcare and social care, participants shared accounts of times when this has not occurred, describing a negative impact on the well-being and quality of life of their child and family.

journal_name

BMJ Open

journal_title

BMJ open

authors

Cowpe Jebson E,Hanson B,Smith CH

doi

10.1136/bmjopen-2014-005934

subject

Has Abstract

pub_date

2014-10-17 00:00:00

pages

e005934

issue

10

issn

2044-6055

pii

bmjopen-2014-005934

journal_volume

4

pub_type

杂志文章

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