A systematic review and qualitative synthesis of the experiences of parents of individuals living with Duchenne muscular dystrophy.

PURPOSE: Some parents of children with DMD find their role challenging, affecting quality of life. To inform support methods, we aimed to understand the lived experiences of parents and how these interact with disease progression. MATERIALS AND METHODS: PRISMA informed protocol development. Qualitative and mixed methods studies were included. Four databases were searched and study quality was assessed using a standardised measure. Extracted data were analysed using thematic synthesis. RESULTS: 26 studies were included, comprising 362 parents. Seven descriptive themes were apparent: "Diagnostic Experiences", "Coping with the Caregiver Role", "Illness Trajectory and Associated Interventions", "Family Communication", "Network of Support", "Navigating Systems" and "Transition Experiences". Four analytical themes were then derived: "The Cyclical Nature of Grief", "Lifelong Expert in the Needs and Experiences of an Individual with DMD", "Navigating Deviation from Typical Life Course" and "Uncertainty as Ever Present". CONCLUSION: The extant evidence suggests that the experience of parenting a child with DMD is often characterised by: a cycle of grief that begins at diagnosis, which runs parallel to the development of expertise in caregiving; within this parents notice deviations from their child's and their own expected life course and adjust to the emotions and uncertainty that this can bring.IMPLICATIONS FOR REHABILITATIONProfessionals should be cognisant to the complex grief process associated with DMD, which occurs from diagnosis onwards.There should be continued support for parents following bereavement.Peer support groups may also offer parents ways to maintain well-being.The necessity for parents to function effectively within an uncertain context that induces challenging emotions suggests a role for psychological therapies.

Improving specialised care for neuromuscular patients reduces the frequency of preventable emergency hospital admissions.

Two retrospective audits were undertaken across several hospitals to understand the frequency and preventability of emergency admissions in people with neuromuscular disease (NMD). Following audit 1 (A1), a number of preventable themes emerged on the basis of which recommendations were made to improve quality and co-ordination of care and a network approach was developed to improve awareness and education amongst patients and non-expert professionals. Audit 2 (A2) was undertaken to determine the effect of these measures. The central NHS IT database identified emergency NMD admissions. Case notes were reviewed and audited against pre-agreed criteria. A1 included 576 admissions (395 patients) A2 included 361 admissions (314 patients). Preventable admissions (where an NMD was known) accounted for 63% in A1 and 33% in A2, with more patients followed up at a specialised neuromuscular centre in A2. There were fewer re-admissions in A2 (12%) compared with A1 (25%) and lower mortality (A1: 4.5%, A2: 0.3%). A2 showed a significant rise in patients admitted under the care of neuroscience during the acute admission and fewer preventable ITU admissions. These audits demonstrate a significant impact for both patient care and potential for financial savings following the implementation of recommendations made after A1.