References
- Mendell J, Shilling C, Leslie N, et al. Evidence-based path to newborn screening for Duchenne muscular dystrophy. Ann Neurol. 2012;71(3):304–313.
- Nascimento Osorio A, Medina Cantillo J, Camacho Salas A, et al. Consensus on the diagnosis, treatment and follow-up of patients with Duchenne muscular dystrophy. Neurol. 2019;34(7):469–481.
- Mah JK, Selby K, Campbell C, et al. A population-based study of dystrophin mutations in Canada. Can J Neurol Sci. 2011;38(3):465–474.
- Davidson ZE, Truby H. A review of nutrition in Duchenne muscular dystrophy. J Hum Nutr Diet. 2009;22(5):383–393.
- Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol. 2010;9(1):77–93.
- Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management. Lancet Neurol. 2018;17(4):2–28.
- Salleron J, Cuisset J, Carpentier A, et al. Natural evolution of weight status in Duchenne muscular dystrophy: a retrospective audit. Br J Nutr. 2011;105(10):1486–1491.
- Hadjiyannakis S, Buchholz A, Chanoine J-P, et al. The Edmonton obesity staging system for pediatrics: a proposed clinical staging system for paediatric obesity. Paediatr Child Health. 2016;21(1):21–26.
- Bushby K, Bourke J, Bullock R, et al. The multidisciplinary management of Duchenne muscular dustrophy. Curr. Paediatr. 2005;15(4):292–300.
- Zammit C, Liddicoat H, Moonsie I, et al. Obesity and respiratory diseases. Int J Gen Med. 2010;3:335–343.
- Leighton S. Nutrition for boys with Duchenne muscular dustrophy. Nutr Diet. 2003;60(1):11–16.
- Seddon P, Khan Y. Respiratory problems in children with neurological impairment. Arch Dis Child. 2003;88(1):75–78.
- Sawnani H, Thampratankul L, Szczesniak RD, et al. Sleep disordered breathing in young boys with Duchenne muscular dystrophy. J Pediatr. 2015;166(3):640–645.
- Rimmer JH, Rowland JL, Yamaki K. Obesity and secondary conditions in adolescents with disabilities: addressing the needs of an underserved population. J Adolesc Health. 2007;41(3):224–229.
- Mcpherson AC, Amin R, McAdam L, et al. Growth assessment and weight management in paediatric neuromuscular clinics: a cross-sectional survey across Canada. Disabil Rehabil. 2020;43(21):3015–3020.
- Walker M, Nixon S, Haines J, et al. I work out, who cares if I'm bigger: what matters to youth with ASD regarding weight and their bodies? Dev Neurorehabil. 2020;23(1):31–38.
- Jachyra P, Anagnostou E, Knibbe TJ, et al. “Girls don’t have big tummies”: the experiences of weight-related discussions for children with autism spectrum disorders. Autism. 2019;23(5):1096–1105.
- McPherson AC, Swift JA, Peters M, et al. Communicating about obesity and weight-related topics with children with a physical disability and their families: Spina bifida as an example. Disabil Rehabil. 2017;39(8):791–797.
- Jachyra P, Anagnostou E, Knibbe TJ, et al. Weighty conversations: caregivers’, children’s, and clinicians’ perspectives and experiences of discussing weight-related topics in healthcare consultations. Autism Res. 2018;11(11):1500–1511.
- Hamdani Y, Mistry B, Gibson BE. Transitioning to adulthood with a progressive condition: best practice assumptions and individual experiences of young men with Duchenne muscular dystrophy. Disabil Rehabil. 2015;37(13):1144–1151.
- Abbott D, Carpenter J. Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood. Disabil Soc. 2014;29(8):1192–1205.
- Yamaguchi M, Suzuki M. Becoming a back-up carer: parenting sons with Duchenne muscular dystrophy transitioning into adulthood. Neuromuscul Disord. 2015;25(1):85–93.
- Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management. Lancet Neurol. 2018;17(4):347–361.
- Sandelowski M. Focus on research methods: whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–340.
- Lopez KA, Willis DG. Descriptive versus interpretive phenomenology: their contributions to nursing knowledge. Qual Health Res. 2004;14(5):726–735.
- Walker M, Nixon S, Haines J, et al. Examining risk factors for overweight and obesity in children with disabilities: a commentary on Bronfenbrenner's ecological systems framework. Dev Neurorehabil. 2019;22(5):359–364.
- Obesity Canada. 5As for pediatric obesity management; 2014.
- Setchell J, Thille P, Abrams T, et al. Enhancing human aspects of care with young people with muscular dystrophy: results from a participatory qualitative study with clinicians. Child Care Health Dev. 2018;44(2):269–277.
- Bekken W. ‘I want them to see that I feel normal’: three children’s experiences from attending consultations in paediatric rehabilitation. Disabil Soc. 2014;29(5):778–791.
- Gibson BE, Teachman G, Wright V, et al. Children's and parents' beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy. Child Care Health Dev. 2012;38(1):61–69.
- Polfuss M, Johnson N, Bonis SA, et al. Autism spectrum disorder and the child's weight-related behaviors: a parents' perspective. J Pediatr Nurs. 2016;31(6):598–607.
- Soderback M, Coyne I, Harder M. The importance of including both a child perspective and the child's perspective within health care settings to provide truly child-centred care. J Child Health Care. 2011;15(2):99–106.
- Holt NL, Moylan BA, Spence JC, et al. Treatment preferences of overweight youth and their parents in western Canada; 2008.
- McPherson A, Keith R, Swift J. Obesity prevention for children with physical disabilities: a scoping review of physical activity and nutrition interventions. Disabil Rehabil. 2014;36(19):1573–1587.
- Sharabi A, Marom-Golan D. Social support, education levels, and parents’ involvement: a comparison between mothers and fathers of young children with autism spectrum disorder. Top Early Child Spec Educ. 2018;38(1):54–64.
- Polfuss M, Marston E, Pridham K, et al. Relationship between stress and feeding behaviors in parents of children with developmental disabilities. Child Obes. 2001;17:457–466.
- Yaffe Y. Systematic review of the differences between mothers and fathers in parenting styles and practices. Curr Psychol. 2020. DOI:10.1007/s12144-020-01014-6.