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

Smith, CH; Hanson, B; (2014) What do parents of children with dysphagia think about their MDT? A qualitative study. BMJ Open , 4 (10) , Article e005934. 10.1136/bmjopen-2014-005934. Green open access

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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: Fourteen 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 (e.g. for symptomatic treatment of Gastro-oesophageal reflux disease (GORD). Participants were interviewed within their homes using a semi-structured 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 multidisciplinary team; 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 health 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.

Type: Article
Title: What do parents of children with dysphagia think about their MDT? A qualitative study
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmjopen-2014-005934
Publisher version: http://dx.doi.org/10.1136/bmjopen-2014-005934
Language: English
Additional information: This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
Keywords: Parent, Multidisciplinary team, Paediatric, Dysphagia, Qualitative
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition
UCL > Provost and Vice Provost Offices > UCL BEAMS
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Engineering Science
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Engineering Science > Dept of Mechanical Engineering
URI: https://discovery.ucl.ac.uk/id/eprint/1450255
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