title: What do parents of children with dysphagia think about their MDT? A qualitative study.
abstract: OBJECTIVE
  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).
  
  
  METHODS
  This research was completed in community settings, within families' homes across the UK.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
authors.affiliation: Speech and Language Therapy, Royal Free Hospital, London, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Cowpe Jebson
authors.affiliation: Department of Mechanical Engineering, University College London, London, UK.
authors.forename: Ben
authors.initials: B
authors.lastname: Hanson
authors.affiliation: Department of Language and Communication, Division of Psychology and Language Sciences, University College London, London, UK.
authors.forename: Christina H
authors.initials: CH
authors.lastname: Smith
mesh_terms: D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003680:Deglutition Disorders; D006297:Health Services Accessibility; D006801:Humans; D010290:Parents; D010348:Patient Care Team; D010358:Patient Participation; D017060:Patient Satisfaction; D036301:Qualitative Research
keywords: QUALITATIVE RESEARCH