Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians

ConclusionAlthough 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.

Source: Child: Care, Health and Development - November 1, 2017 Category: Child Development Authors: J. Setchell, P. Thille, T. Abrams, L. C. McAdam, B. Mistry, B. E. Gibson Tags: ORIGINAL ARTICLE Source Type: research