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Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians
Author(s) -
Setchell J.,
Thille P.,
Abrams T.,
McAdam L. C.,
Mistry B.,
Gibson B. E.
Publication year - 2018
Publication title -
child: care, health and development
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.832
H-Index - 82
eISSN - 1365-2214
pISSN - 0305-1862
DOI - 10.1111/cch.12526
Subject(s) - psychosocial , medicine , qualitative research , multidisciplinary approach , staffing , flexibility (engineering) , nursing , health care , observational study , citizen journalism , family medicine , psychology , psychiatry , social science , statistics , mathematics , pathology , sociology , economics , economic growth , world wide web , computer science
Background Most research into clinical care of Duchenne or Becker dystrophinopathies (MD) has focused on slowing progressive muscular weakness and extending lifespan. Scarce attention has been paid to the “human” aspects of care such as psychosocial health, living a fulfilling life, or dealing with disability stigma. This study partnered with clinicians to identify and address local and systemic barriers to these human aspects of care. Methods We employed a participatory qualitative design at a multidisciplinary MD clinic using 2 methods: (a) ethnographic observations over a 6‐month period of clinic visits of children with MD and families, involving 12 clinicians, and (b) 3 “dialogues” (2‐way discussions) with these clinicians to collaboratively analyze practices and co‐produce recommendations for change. Results Our methods produced rich data that, when coanalyzed with clinicians and in consultation with a family advisor, provided deep insights into the practices and underlying assumptions of a neuromuscular clinic. Staff recognized the importance of the human aspects of care but, in reviewing the observational data, identified that it was given insufficient attention in (a) routine clinical processes, (b) clinician‐family patterns of interaction, and (c) staffing allocations. Conclusion Although the human aspects of care were important to clinicians in the MD clinic, the routines and nature of the clinic meant these were frequently sidelined for biomedical objectives. We present collaboratively produced practical recommendations toward addressing this disjunction between ideals and practice including developing flexibility to tailor appointment frequency, composition, and length; providing time and physical space for psychosocial aspects of care; and clinician skill building to support child/family expression of “negative” emotions; and discussion of sociopolitical aspects of MD such as living with disability stigma. The study offers a set of considerations that, taking into account individual differences, offer insights for similar clinics elsewhere.