Publication related to RSI or an RSI staff member
Understanding the experiences of lung volume recruitment among boys with Duchenne muscular dystrophy: A multicenter qualitative study.
BACKGROUND: Despite recommendations for regular lung volume recruitment (LVR) use in clinical practice guidelines for children with neuromuscular disease, adherence to LVR is poor. We aimed to describe the experience of LVR by boys with Duchenne muscular dystrophy (DMD), their families, and healthcare providers (HCPs), as well as to identify the barriers and facilitators to LVR use. METHODS: This multicenter, qualitative study evaluated boys with DMD (n = 11) who used twice-daily LVR as part of a randomized controlled trial, as well as their parents (n = 11), and HCPs involved in the clinical use of LVR (n = 9). Semistructured interviews were conducted to identify participants’ understanding of LVR therapy and their beliefs, barriers and facilitators to its use. Thematic analysis was conducted using an inductive approach. A subanalysis compared adherent and nonadherent children. RESULTS: Seven themes were identified related to participants’ beliefs and experiences with LVR: emotional impact, adaptation to LVR, perceived benefits of LVR, routine, family engagement, clinical resources, and equipment-related factors. Strategies to improve adherence were also identified, including education, reinforcement and demonstration of LVR benefit, as well as clinician support. There were no thematic differences between adherent and nonadherent children. DISCUSSION: Despite the benefits of LVR and positive experiences with it by many families, there remain barriers to adherence to treatment. HCPs need to balance the need for early introduction to give families time to adapt to LVR while ensuring that the benefit of LVR outweighs the burden. Clinician support is important for family engagement.
Authors
- Katz, Sherri L, Katz SL, Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.; Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.; Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
- Blinder, Henrietta, Blinder H, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
- Newhook, Dennis, Newhook D, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
- Bmus, Leana Azerrad, Bmus LA, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
- Nicholls, Stuart, Nicholls S, The Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
- McMillan, Hugh J, McMillan HJ, Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.; Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.; Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
- Mah, Jean K, Mah JK, Department of Pediatrics and Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.; Alberta Children's Hospital Research Institute, Calgary, Alberta, Canada.; Division of Pediatric Neurology, Alberta Children's Hospital, Calgary, Alberta, Canada.
- Campbell, Craig, Campbell C, Pediatrics, Epidemiology and Clinical Neurological Sciences, University of Western Ontario, London, Ontario, Canada.; Department of Paediatrics, Children's Hospital London Health Sciences Centre, London, Ontario, Canada.
- McAdam, Laura C, McAdam LC, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
- Zielinski, David, Zielinski D, Montreal Children's Hospital, Montreal, Quebec, Canada.; Research Institute of McGill University Health Centre, McGill University, Montreal, Quebec, Canada.
- Toupin-April, Karine, Toupin-April K, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.; Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.; Faculty of Health Sciences, University of Ottawa, Ottawa, Ontario, Canada.
- Momoli, Franco, Momoli F, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
- McKim, Douglas A, McKim DA, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.; The Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.; CANVent Respiratory Rehabilitation Services, The Ottawa Hospital Rehabilitation Centre, Ottawa, Ontario, Canada.
BACKGROUND: Despite recommendations for regular lung volume recruitment (LVR) use in clinical practice guidelines for children with neuromuscular disease, adherence to LVR is poor. We aimed to describe the experience of LVR by boys with Duchenne muscular dystrophy (DMD), their families, and healthcare providers (HCPs), as well as to identify the barriers and facilitators to LVR use. METHODS: This multicenter, qualitative study evaluated boys with DMD (n = 11) who used twice-daily LVR as part of a randomized controlled trial, as well as their parents (n = 11), and HCPs involved in the clinical use of LVR (n = 9). Semistructured interviews were conducted to identify participants' understanding of LVR therapy and their beliefs, barriers and facilitators to its use. Thematic analysis was conducted using an inductive approach. A subanalysis compared adherent and nonadherent children. RESULTS: Seven themes were identified related to participants' beliefs and experiences with LVR: emotional impact, adaptation to LVR, perceived benefits of LVR, routine, family engagement, clinical resources, and equipment-related factors. Strategies to improve adherence were also identified, including education, reinforcement and demonstration of LVR benefit, as well as clinician support. There were no thematic differences between adherent and nonadherent children. DISCUSSION: Despite the benefits of LVR and positive experiences with it by many families, there remain barriers to adherence to treatment. HCPs need to balance the need for early introduction to give families time to adapt to LVR while ensuring that the benefit of LVR outweighs the burden. Clinician support is important for family engagement.
