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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Parent-child communication and timing of interventions are challenges in the Duchenne muscular dystrophy care
T Saetrang1,2, I T Bjørk3, H Capjon2
1Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway.
Insights
Parents of boys with Duchenne muscular dystrophy (DMD) need sensitive information, involvement in care, and continuous support. Professional teams should adopt a holistic approach for families managing DMD.
Area of Science:
- Medical Genetics
- Neurology
- Pediatrics
Background:
- Duchenne muscular dystrophy (DMD) is a severe X-linked myopathy impacting male births.
- Understanding parental experiences is crucial for comprehensive care.
Purpose of the Study:
- To explore the lived experiences of parents caring for boys with Duchenne muscular dystrophy.
- To identify key support needs and challenges faced by families affected by DMD.
Main Methods:
- Qualitative study involving interviews with parents from 12 families in Norway.
- Participants' sons had a mean age of 13 years (range 7-17).
Main Results:
- Parents emphasized the need for clear, sensitive information and involvement in treatment decisions.
- Peer support was highly valued, alongside a need for personal coping strategies and professional guidance.
- Continuity of care during transition to adulthood and support for discussing the diagnosis with affected sons were highlighted.
Conclusions:
- Professional care teams should adopt a holistic approach, considering the broader parental perspective.
- Integrating parental needs and experiences into care plans is essential for supporting families with DMD.
Aim:
Duchenne muscular dystrophy (DMD) is an X-linked myopathy affecting one in 3600-6000 live male births. The aim of this study was to gain further insight into how parents experience caring for boys with DMD.
Methods:
Using a qualitative design, parents in 12 families with boys with DMD, whereof two pairs of siblings, were interviewed in 2014 and 2015. Participants were parents of boys followed at Oslo University Hospital or other hospitals in the south-eastern health region of Norway. Mean age of the boys was 13 years, range 7-17.
Results:
Parents expressed the importance of obtaining good information about the diagnosis, supplied with sensitivity for them as clients, and the parents must be involved in timing of interventions. Meeting with others in the same situation was highly appreciated. Many of the parents expressed their own need for support to cope with the difficult situation. Continuity of support in the boys' transition to adulthood was pointed out as important, as well as the need for professional help to talk to the boys about their diagnosis.
Conclusion:
Our study suggests that professional teams should expand the parental perspective and emphasise a holistic approach in their work with patients with DMD.
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