References
- Mercuri E, Finkel RS, Muntoni F, Wirth B, Montes J, Main M, Mazzone ES, Vitale M, Snyder B, Quijano-Roy S, et al. Diagnosis and management of spinal muscular atrophy: part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Dis. 2018;28(2):103–15. doi:https://doi.org/10.1016/j.nmd.2017.11.005.
- Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, Case LE, Clemens PR, Hadjiyannakis S, Pandya S, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17(3):251–67. doi:https://doi.org/10.1016/s1474-4422(18)30024-3.
- Ishikawa Y, Miura T, Ishikawa Y, Aoyagi T, Ogata H, Hamada S, Minami R. Duchenne muscular dystrophy: survival by cardio-respiratory interventions. Neuromuscul Disord. 2011;21(1):47–51. doi:https://doi.org/10.1016/j.nmd.2010.09.006.
- Amin R, Al-Saleh S, Narang I. Domiciliary noninvasive positive airway pressure therapy in children. Pediatr Pulmonol. 2016;51(4):335–48. doi:https://doi.org/10.1002/ppul.23353.
- Barnhart WR, Ellsworth DW, Robinson AC, Myers JV, Andridge RR, Havercamp SM. Caregiving in the shadows: national analysis of health outcomes and intensity and duration of care among those who care for people with mental illness and for people with developmental disabilities. Disability and Health Journal. 2020;13(1):100837. doi:https://doi.org/10.1016/j.dhjo.2019.100837.
- Landfeldt E, Edström J, Buccella F, Kirschner J, Lochmüller H. Duchenne muscular dystrophy and caregiver burden: a systematic review. Dev Med Child Neurol. 2018;60(10):987–96. doi:https://doi.org/10.1111/dmcn.13934.
- Landfeldt E, Lindgren P, Bell C F, Guglieri M, Straub V, Lochmüller H, Bushby K. Quantifying the burden of caregiving in Duchenne muscular dystrophy. J Neurol 2016;1–10. https://doi.org/10.1007/s00415-016-8080-9
- Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052–60. doi:https://doi.org/10.1001/jama.2014.304.
- Pangalila RF, Van Den Bos GAM, Stam HJ, Van Exel NJA, Brouwer WBF, Roebroeck ME. Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy. Disabil Rehabil. 2012;34(12):988–96. doi:https://doi.org/10.3109/09638288.2011.628738.
- Keilty K, Cohen E, Spalding K, Pullenayegum E, Stremler R. Sleep disturbance in family caregivers of children who depend on medical technology. Arch Dis Child. 2017;103(2):137–42. doi:https://doi.org/10.1136/archdischild-2016-312205.
- Nozoe KT, Polesel DN, Moreira GA, Pires GN, Akamine RT, Tufik S, Andersen ML. Sleep quality of mother-caregivers of Duchenne muscular dystrophy patients. Sleep Breath. 2016;20(1):129–34. doi:https://doi.org/10.1007/s11325-015-1196-9.
- Morelius E, Hemmingsson H. Parents of children with physical disabilities - perceived health in parents related to the child’s sleep problems and need for attention at night. Child Care Health Dev. 2014;40(3):412–18. doi:https://doi.org/10.1111/cch.12079.
- Read J, Simonds A, Kinali M, Muntoni F, Garralda ME. Sleep and well-being in young men with neuromuscular disorders receiving non-invasive ventilation and their carers. Neuromuscul Disord. 2010;20(7):458–63. doi:https://doi.org/10.1016/j.nmd.2010.05.011.
- Israelsson-Skogsberg Å, Persson C, Markström A, Hedén L. Children with home mechanical ventilation—Parents’ health-related quality of life, family functioning and sleep. Acta Paediatr. 2020;109(9):1807–14. doi:https://doi.org/10.1111/apa.15177.
- McCabe SM, Blackmore AM, Abbiss CR, Langdon K, Elliott C. Sleep concerns in children and young people with cerebral palsy in their home setting. J Paediatr Child Health. 2015;51:1188–94. doi:https://doi.org/10.1111/jpc.12933.
- Bloetzer C, Jeannet P-Y, Lynch B, Newman CJ. Sleep disorders in boys with Duchenne muscular dystrophy. Acta Paediatr. 2012;101(12):1265–69. doi:https://doi.org/10.1111/apa.12025.
- Travlos V, Downs J, Wilson A, Hince D, Patman S. Mental wellbeing in non-ambulant youth with neuromuscular disorders: what makes the difference? Neuromuscul Disord. 2019;29(1):48–58. doi:https://doi.org/10.1016/j.nmd.2018.08.013.
- Webb E, Panico L, Bécares L, McMunn A, Kelly Y, Sacker A. The Inter-relationship of Adolescent Unhappiness and Parental Mental Distress. J Adolesc Health. 2017;60(2):196–203. doi:https://doi.org/10.1016/j.jadohealth.2016.10.001.
- Elwick H, Joseph S, Becker S, Becker F. Manual for the Adult Carer Quality of Life Questionnaire (AC-QoL). 2010 [ cited 2014 12.02.2020]; Available from: http://static.carers.org/files/adult-carer-qol-published-version-5571.pdf.
- Negri L, Piazza G, Sartori RDG, Cocchi MG, Delle Fave A. The adult carer quality of life questionnaire (AC-QoL): comparison with measures of burden and well-being, and Italian validation. Disabil Rehabil. 2019;41(10):1207–16. doi:https://doi.org/10.1080/09638288.2017.1423519.
- Joseph S, Becker S, Elwick H, Silburn R. Adult carers quality of life questionnaire (AC-QoL): development of an evidence-based tool. Ment Health Rev. 2012;17(2):57–69. doi:https://doi.org/10.1108/13619321211270380.
- Australian Curriculum Assessment and Reporting Authority (ACARA). Data Standards Manual: student Background Characteristics. Australian Curriculum Assessment and Reporting Authority (ACARA), 2012 October 2012 11.10.2016; Sixth edition:[ Available from: www.acara.edu.au]
- Mayhew AG, Eagle M, Steffenson B. S.P.6 Exploratory Rasch analysis of the EK2 scale used in a population of Duchenne muscular dystrophy (DMD). Neuromuscul Disord. 2012;22(9/10):877. doi:https://doi.org/10.1016/j.nmd.2012.06.245.
- Steffensen B, Hyde S, Lyager S, Mattsson E. Validity of the EK scale: a functional assessment of non-ambulatory individuals with Duchenne muscular dystrophy or spinal muscular atrophy. Physiother Res Int. 2001;6(3):119–34. doi:https://doi.org/10.1002/pri.221.
- Connolly AM, Florence JM, Zaidman CM, Golumbek PT, Mendell JR, Flanigan KM, Karachunski PI, Miller J and the MDA DMD Clinical Research Network. Clinical trial readiness in non-ambulatory boys and men with DMD: MDA-DMD network follow-up. Muscle Nerve. 2016;54(4):681–89. doi:https://doi.org/10.1002/mus.25089.
- Hockenberry M, Wilson D, Winkelstein M. Wong’s Essentials of Pediatric Nursing. 7th ed. St. Louis (MO): Mosby; 2005. p. 1259.
- Garra, G., A.J. Singer, B.R. Taira, J. Chohan, H. Cardoz, E. Chisena, and H.C. Thode, Jr., Validation of the Wong-Baker FACES Pain Rating Scale in pediatric emergency department patients. Acad Emergency Med., 2010; 17(1): 50–54. doi:https://doi.org/10.1111/j.1553-2712.2009.00620.x.
- Bruni O, Ottaviano S, Guidetti V, Romoli M, Innocenzi M, Cortesi F, Giannotti F. The Sleep Disturbance Scale for Children (SDSC). Construction and validation of an instrument to evaluate sleep disturbances in childhood and adolescence. J Sleep Res. 1996;5(4):251–61. doi:https://doi.org/10.1111/j.1365-2869.1996.00251.x.
- Tietze, A. L., Zernikow, B., Michel, E., Blankenburg, M. Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep. Dev Med Child Neurol. 2014;56(12):1187–93. doi:https://doi.org/10.1111/dmcn.12530.
- Toly VB, Musil CM, Carl JC. A longitudinal study of families with technology-dependent children. Res Nurs Health. 2012;35(1):40–54. doi:https://doi.org/10.1002/nur.21454.
- Johnson E, Lincoln M, Cumming S. Principles of disability support in rural and remote Australia: lessons from parents and carers. Health Soc Care Community. 2020;28(6):2208–17. doi:https://doi.org/10.1111/hsc.13033.
- Malbon E, Carey G, Meltzer A. Personalisation schemes in social care: are they growing social and health inequalities? BMC Public Health. 2019;19(1):805. doi:https://doi.org/10.1186/s12889-019-7168-4.
- Nozoe KT, Hachul H, Hirotsu C, Polesel DN, Moreira GA, Tufik S, Andersen ML. The relationship between sexual function and quality of sleep in caregiving mothers of sons with duchenne muscular dystrophy. Sex Med. 2014;2(3):133–40. doi:https://doi.org/10.1007/s11325-015-1196-9.
- Hemmingsson H, Stenhammar AM, Paulsson K. Sleep problems and the need for parental night-time attention in children with physical disabilities. Child Care Health Dev. 2009;35(1):89–95. doi:https://doi.org/10.1111/j.1365-2214.2008.00907.x.
- Travlos V, Bulsara C, Patman S, Downs J. A fine balance and a shared learning journey: exploring healthcare engagement through the experiences of youth with neuromuscular disorders. NeuroRehab. 2016;39(4):519–34. doi:https://doi.org/10.3233/nre-161383.
- Sawnani H. Sleep disordered breathing in Duchenne muscular dystrophy. Paediatr Respir Rev. 2019;30:2–8. doi:https://doi.org/10.1016/j.prrv.2018.07.003.
- Sobotka SA, Gaur DS, Goodman DM, Agrawal RK, Berry JG, Graham RJ. Pediatric patients with home mechanical ventilation: the health services landscape. Pediatr Pulmonol. 2019;54(1):40–46. doi:https://doi.org/10.1002/ppul.24196.
- Dreier LA, Wager J, Blankenburg M, Zernikow B. The unfavorable alliance of pain and poor sleep in children with life-limiting conditions and severe psychomotor impairment. Children (Basel). 2018;5(7):82. doi:https://doi.org/10.3390/children5070082.
- De Koninck J, Lorrain D, Gagnon P. Sleep positions and position shifts in five age groups: an ontogenetic picture. Sleep. 1992;15(2):143–49. doi:https://doi.org/10.1093/sleep/15.2.143.
- Hill S, Goldsmith J. Biomechanics and prevention of body shape distortion. Tizard Learn Dis Rev. 2010;15(12):15–29. doi:https://doi.org/10.5042/tldr.2010.0166.
- Abreu NJ, Waldrop MA. Overview of Gene Therapy in Spinal Muscular Atrophy and Duchenne Muscular Dystrophy. Pediatr Pulmonol. 2020. In Press(n/a). https://doi.org/10.1002/ppul.25055
- de la Vega R, Miró J, Esteve R, Ramírez-Maestre C, López-Martínez AE, Jensen MP. Sleep disturbance in individuals with physical disabilities and chronic pain: the role of physical, emotional and cognitive factors. Disabil Health. 2019;12(4):588–93. doi:https://doi.org/10.1016/j.dhjo.2019.04.001.
- Langer T, Kirschner J. Outcomes in Duchenne muscular dystrophy: nature, nurture, culture–or all three? Dev Med Child Neurol. 2017;59(8):780–81. doi:https://doi.org/10.1111/dmcn.13474.
- Rodríguez-Ardura I, Meseguer-Artola A. Editorial: how to Prevent, Detect and Control Common Method Variance in Electronic Commerce Research. J Theor Applied Electr Comm Res. 2020;15:i–v. https://scielo.conicyt.cl/scielo.php?script=sci_arttext&pid=S0718-18762020000200101
- Ji X, Liu J. Subjective sleep measures for adolescents: a systematic review. Child Care Health Dev. 2016;42(6):825–39. doi:https://doi.org/10.1111/cch.12376.
- Siegel BI, Cakmak A, Reinertsen E, Benoit M, Figueroa J, Clifford GD, Phan HC. Use of a wearable device to assess sleep and motor function in Duchenne muscular dystrophy. Muscle Nerve. 2020;61(2):198–204. doi:https://doi.org/10.1002/mus.26759.
- Tietze AL, Zernikow B, Otto M, Hirschfeld G, Michel E, Koh M, Blankenburg M. The development and psychometric assessment of a questionnaire to assess sleep and daily troubles in parents of children and young adults with severe psychomotor impairment. Sleep Med. 2014;15(2):219–27. doi:https://doi.org/10.1016/j.sleep.2013.09.019.
- Ergenekon AP, Yegit CY, Cenk M, Ikizoglu NB, Atag E, Gokdemir Y. Depression and Anxiety in Mothers of Home Ventilated Children Before and During COVID-19 Pandemic. Pediatr Pulmonol. 2020. In Press. https://doi.org/10.1002/ppul.25107