A number of complex challenges were identified for the adoption and adherence of lung volume recruitment (LVR) by patients with Duchenne muscular dystrophy (DMD) and their families in a study published in Pediatric Pulmonology.
“This study found that, despite LVR being beneficial and accepted by families, there remain barriers to its daily use in boys with DMD,” the authors said.
Through semistructured interviews, the study identified 7 major themes about the beliefs and experiences of participants receiving LVR. These themes included emotional impact, adaption to LVR, perceived benefits of LVR, routine, family engagement, clinical resources, and equipment-related factors.
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Interview participants had mixed emotions about the use of LVR, with most parents feeling empowered to be able to help their child but others finding it to be a reminder of their child’s worsening health. Families also felt there was a bit of a learning curve with it, taking several sessions before they felt comfortable and confident using it.
In addition, many participants expressed that they felt there was a lack of benefit when using LVR twice a day when their child was healthy, but they increased its use when their child was feeling sick. Parents and children also mentioned that developing a routine was necessary to adhere to the use of LVR.
A lack of cooperation from the child was encountered frequently by parents of children expressing a lack of interest. Many parents mentioned this occurring as their children became teenagers, but some found that their children became more engaged as they got older and understood its importance.
Support from clinicians was also found to be helpful in improving adherence to LVR through positive reinforcement. Several participants mentioned issues with equipment including difficulty getting a mask that fit correctly and the child having trouble performing the exercises themselves because of lack of strength or coordination to pump the bag alone.
In the study, parents had several suggestions to improve adherence to LVR including having the clinicians emphasize the positive aspects of therapy when LVR is introduced and having clinicians demonstrate it on themselves. Providing access to evidence of LVR benefits such as copies of scientific literature and the use of pulmonary tests to show improvements in respiratory function were also suggested as ways to improve adherence.
Other suggestions included helping families establish a routine, improving family engagement through visual aides, making it into a fun game instead of an exercise, and having more clinical resources available such as on-site LVR equipment for teaching and videos available to watch. They also recommended having families practice LVR at follow-up visits.
Eleven family dyads including 11 patients with DMD and 11 parents were included in the study. Nine healthcare professionals (3 physicians, 3 respiratory therapists, and 3 physiotherapists) were also interviewed during the study.
Katz SL, Blinder H, Newhook D, et al. Understanding the experiences of lung volume recruitment among boys with Duchenne muscular dystrophy: a multicenter qualitative study. Pediatr Pulmonol. Published online September 14, 2022. doi:10.1002/ppul.26154