Child and family health-related quality of life and participation outcomes and goals after acquired brain injury: a cross-sectional survey

References

• Gordon A, di Maggio A. Rehabilitation for children after acquired brain injury: Current and emerging approaches. Pediatr Neurol. 2012;46(6):339–44. doi:10.1016/j.pediatrneurol.2012.02.029.
   PubMed Web of Science ®Google Scholar
• Treadgold B, Kennedy C, Spoudeas H, Sugden E, Walker D, Bull K. Paediatric neuro-oncology rehabilitation in the UK: carer and provider perspectives. Bmjpo. 2019;3(1):e000567. doi:10.1136/bmjpo-2019-000567.
   Web of Science ®Google Scholar
• Gordon A. Functioning and disability after stroke in children: using the ICF-CYto classify health outcome and inform future clinical research priorities. Dev Med Child Neurol. 2014;56(5):434–44. doi:10.1111/dmcn.12336.
   PubMed Web of Science ®Google Scholar
• Imms C, Green D. Participation: optimising outcomes in Childhood-Onset Neurodisability. 1 ed. London: Mac Keith Press; 2020.
   Google Scholar
• Anaby D, Khetani M, Piskur B, van der Holst M, Bedell G, Schakel F, de Kloet A, Simeonsson R, Imms C. Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice. Disabil Rehabil. 2022;44(9):1746–57. doi:10.1080/09638288.2021.1903102.
   PubMed Web of Science ®Google Scholar
• Aitken ME, McCarthy ML, Slomine BS, Ding R, Durbin DR, Jaffe KM, Paidas CN, Dorsch AM, Christensen JR, MacKenzie EJ, et al. Family burden after traumatic brain injury in children. Pediatrics. 2009;123(1):199–206. doi:10.1542/peds.2008-0607.
   PubMed Web of Science ®Google Scholar
• Kirk S, Fallon D, Fraser C, Robinson G, Vassallo G. Supporting parents following childhood traumatic brain injury: a qualitative study to examine information and emotional support needs across key care transitions. Child Care Health Dev. 2015;41(2):303–13. doi:10.1111/cch.12173.
   PubMed Web of Science ®Google Scholar
• Allonsius F, De Kloet A, Van Markus-Doornbosch F, Meesters J, Kromme C, Vliet Vlieland T, Van Der Holst M. Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting. Brain Inj. 2021;35(5):563–73. doi:10.1080/02699052.2021.1891287.
   PubMed Web of Science ®Google Scholar
• Jenkin T, Anderson V, D’Cruz K, Scheinberg A, Knight S. Family-centred service in paediatric acquired brain injury rehabilitation: bridging the gaps. Front Rehabilit Sci. 2022;3(1085967). doi:10.3389/fresc.2022.1085967.
   PubMedGoogle Scholar
• Keetley R, Bennett E, Williams J, Stewart I, Whitehouse W, Pilling P, Manning JC. Outcomes for children with acquired brain injury (ABI) admitted to acute neurorehabilitation. Dev Med Child Neurol. 2021;63(7):824–30. doi:10.1111/dmcn.14846.
   PubMed Web of Science ®Google Scholar
• World Health Organisation. Draft intersectional global action plan on epilepsy and the neurological disorders 2022-2031. Seventy-Fifth World Health Assembly. 2022. https://www.who.int/publications/i/item/9789240076624.
   Google Scholar
• McCarron R, Watson S, Gracey F. What do kids with acquired brain injury want? Mapping neuropsychological rehabilitation goals to the International Classification of Functioning, disability and health. J Int Neuropsychol Soc. 2019;25(04):403–12. doi:10.1017/S1355617719000213.
   PubMedGoogle Scholar
• Masi A, Diaz A, Tully L, Azim S, Woolfenden S, Efron D, Eapen V. Impact of the COVID-19 pandemic on the well-being of children with neurodevelopmental disabilities and their parents. J Paediatr Child Health. 2021;57(5):631–36. doi:10.1111/jpc.15285.
   PubMed Web of Science ®Google Scholar
• Jones B, Woolfenden S, Pengilly S, Breen C, Cohn R, Biviano L, Johns A, Worth A, Lamb R, Lingam R, et al. COVID-19 pandemic: the impact on vulnerable children and young people in Australia. J Paediatr Child Health. 2020;56(12):1851–5. doi:10.1111/jpc.15169.
   PubMed Web of Science ®Google Scholar
• Gmelig Meyling C, Verschuren O, Rentinck IR, Engelbert RHH, Gorter JW. Physical rehabilitation interventions in children with acquired brain injury: a scoping review. Dev Med Child Neurol. 2022;64(1):40–8. doi:10.1111/dmcn.14997.
   PubMed Web of Science ®Google Scholar
• NHS England. 2013.2014 NHS Standard Contract for Paediatric Neurosciences: neurorehabilitation section B part 1 - service specifications. London: NHS England; 2013.
   Google Scholar
• Keetley R, Radford K, Manning JC. A scoping review of the needs of children and young people with acquired brain injuries and their families. Brain Inj. 2019;33(9):1117–28. doi:10.1080/02699052.2019.1637542.
   PubMed Web of Science ®Google Scholar
• Lindsay S, Patel S, Ragunathan S, Fuentes K. Ableism among children and youth with acquired brain injury and their caregivers: a systematic review. Brain Inj. 2023;37(8):714–25. doi:10.1080/02699052.2023.2184869.
   PubMed Web of Science ®Google Scholar
• Pye V, Taylor N, Clay-Williams R, Braithwaite J. When is enough, enough? Understanding and solving your sample size problems in health services research. BMC Res Notes. 2016;9(1):1–7. doi:10.1186/s13104-016-1893-x.
   PubMedGoogle Scholar
• Bull K, Hornsey S, K CR, Darlington A, Grootenhuis M, Hargrave D, Liossi C, Shepherd JP, Walker DA, Morris C, et al. Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury. Neuro-Oncology Practice. 2020;7(3):277–87. doi:10.1093/nop/npz064.
   PubMed Web of Science ®Google Scholar
• Resch C, van Kruijsbergen M, Ketelaar M, Hurks P, Adair B, Imms C, De Kloet A, Piskur B, Van Heugten C. Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties. Dev Med Child Neurol. 2020;62(4):434–44. doi:10.1111/dmcn.14465.
   PubMed Web of Science ®Google Scholar
• Varni J Pediatric quality of life inventory: PedsQL; 2019 [ Available from: http://www.pedsql.org/about_pedsql.html.
   Google Scholar
• Terry G, Hayfield N, Clarke V, Braun V. Thematic analysis. In: Willig C, and Stainton Rogers W, editors The SAGE Handbook of Qualitative Research in psychology. London: SAGE Publications Ltd; 2017. p. 17–37.
   Google Scholar
• Wu X, Han L, Zhang J, Luo S, Hu J, Sun K, van Wouwe JP. The influence of physical activity, sedentary behavior on health-related quality of life among the general population of children and adolescents: a systematic review. PloS ONE. 2017;12(11):e0187668. doi:10.1371/journal.pone.0187668.
   PubMed Web of Science ®Google Scholar
• Bedell G The child and adolescent scale of participation - youth version USA. Tufts University; 2011 [ Available from: http://sites.tufts.edu/garybedell/measurement-tools/.
   Google Scholar
• Kroenke K, Spitzer R, Williams JBW, Löwe B. An ultra-brief screening scale for anxiety and depression: the PHQ–4. Psychosomatics. 2009;50(6):613–21. doi:10.1016/S0033-3182(09)70864-3.
   PubMed Web of Science ®Google Scholar
• van Markus-Doornbosch F, van der Holst M, de Kloet A, Vliet Vlieland T, Meesters J. Fatigue, participation and quality of life in adolescents and young adults with acquired brain injury in an outpatient rehabilitation cohort. Dev Neurorehabil. 2020;23(5):328–35. doi:10.1080/17518423.2019.1692948.
   PubMed Web of Science ®Google Scholar
• McCarthy M, MacKenzie E, Durbin D, Aitken M, Jaffe K, Paidas C, Slomine BS, Dorsch AM, Berk RA, Christensen JR, et al. The pediatric quality of life inventory: an evaluation of its reliability and validity for children with traumatic brain injury. Arch Phys Med Rehab. 2005;86(10):1901–09. doi:10.1016/j.apmr.2005.03.026.
   PubMed Web of Science ®Google Scholar
• Upton P, Eiser C, Cheung I, Hutchings H, Jenney M, Maddocks A, Russell IT, Williams JG. Measurement properties of the UK-English version of the pediatric quality of life Inventory™ 4.0 (PedsQL™) generic core scales. Health Qual Life Outcomes. 2005;3(1). doi:10.1186/1477-7525-3-22.
   PubMedGoogle Scholar
• Bedell GM, Dumas HM. Social participation of children and youth with acquired brain injuries discharged from inpatient rehabilitation: a follow-up study. Brain Inj. 2004;18(1):65–82. doi:10.1080/0269905031000110517.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Francillette L, Opatowski M, Toure H, Brugel D, Laurent-Vannier A, Meyer P, Dellatolas G, Watier L, Chevignard M, et al. Participation seven years after severe childhood traumatic brain injury. Disabil Rehabil. 2020;42(17):2402–11. doi:10.1080/09638288.2019.1594398.
   PubMed Web of Science ®Google Scholar
• Allonsius F, de Kloet A, Bedell G, van Markus-Doornbosch F, Rosema S, Meesters J, Vliet Vlieland T, van der Holst M. Participation restrictions among children and young adults with acquired brain injury in a pediatric outpatient rehabilitation cohort: the patients’ and parents’ perspective. Int J Env Res Pub He. 2021;18(4):1625. doi:10.3390/ijerph18041625.
   PubMed Web of Science ®Google Scholar
• De Bock F, Bosle C, Graef C, Oepen J, Philippi H, Urschitz M. Measuring social participation in children with chronic health conditions: validation and reference values of the child and adolescent scale of participation (CASP) in the German context. BMC Pediatr. 2019;19(1):1–13. doi:10.1186/s12887-019-1495-6.
   PubMedGoogle Scholar
• Jenkin T, Anderson VA, D’Cruz K, Scheinberg A, Knight S. Family-centred service in paediatric acquired brain injury rehabilitation: bridging the gaps. Disabil Rehabil. 2022;3. doi:10.3389/fresc.2022.1085967.
   Google Scholar
• Green L, Godfrey C, Soo C, Anderson V, Catroppa C. A preliminary investigation into psychosocial outcome and quality-of-life in adolescents following childhood traumatic brain injury. Brain Inj. 2013;27(7–8):872–7. doi:10.3109/02699052.2013.775506.
   PubMed Web of Science ®Google Scholar
• Tremblay S, Lal S, Xiang L, Ferro M, Anaby D. Organization of rehabilitation services for youth with physical disabilities and mental health problems: a scoping review. Front Rehabil Sci. 2023;4:1085827. doi:10.3389/fresc.2023.1085827.
   PubMedGoogle Scholar
• de Kloet A, Lambregts S, Berger M, van Markus F, Wolterbeek R, Vliet Vlieland T. Family impact of acquired brain injury in children and youth. J Dev Behav Pediatr. 2015;36(5):342–51. doi:10.1097/DBP.0000000000000169.
   PubMed Web of Science ®Google Scholar
• Medrano G, Berlin K, Davies W. Utility of the PedsQL™ family impact module: assessing the psychometric properties in a community sample. Qual Life Res. 2013;22(10):2899–907. doi:10.1007/s11136-013-0422-9.
   PubMed Web of Science ®Google Scholar
• Löwe B, Wahl I, Rose M, Spitzer C, Glaesmer H, Wingenfeld K, Schneider A, Brähler E. A 4-item measure of depression and anxiety: validation and standardization of the patient health questionnaire-4 (PHQ-4) in the general population. J Affect Disord. 2010;122(1–2):86–95. doi:10.1016/j.jad.2009.06.019.
   PubMed Web of Science ®Google Scholar
• Hickey L, Anderson V, Jordan B. Australian parent and sibling perspectives on the impact of paediatric acquired brain injury on family relationships during the first 6 weeks at home. Health Soc Care Community. 2022;30(6):1–9. doi:10.1111/hsc.13938.
   PubMed Web of Science ®Google Scholar
• Rohrer-Baumgartner N, Holthe I, Svendsen E, Røe C, Egeland J, Borgen I, Hauger SL, Forslund MV, Brunborg C, Øra HP, et al. Rehabilitation for children with chronic acquired brain injury in the child in Context Intervention (CICI) study: study protocol for a randomized controlled trial. Trials. 2022;23(1). doi:10.1186/s13063-022-06048-8.
   PubMedGoogle Scholar
• Analytis P, Warren N, Crichton A, Knight S, Ponsford J. Coping and wellbeing in families with a child with acquired brain injury compared with families in the community. Disabil Rehabil. 2022;44(25):7993–8000. doi:10.1080/09638288.2021.2008522.
   PubMed Web of Science ®Google Scholar
• Teel E, Caron J, Gagnon I. Higher parental stress is significantly related to longer clinical recovery times in concussed children: a mixed-methods study. J Sci Med Sport. 2022;25(2):108–14. doi:10.1016/j.jsams.2021.08.014.
   PubMed Web of Science ®Google Scholar
• Vallee M, Chevignard M, Boissel A. The impact of childhood acquired brain injury on siblings: a scoping review. Brain Inj. 2023;37(6):503–516. doi:10.1080/02699052.2023.2184870.
   PubMed Web of Science ®Google Scholar
• Jenkin T, Anderson V, D-Cruz K, Collins A, Muscara F, Scheinberg A, Knight S. Engaging children and adolescents with acquired brain injury and their families in goal setting: the clinician perspective. Neuropsychol Rehabil. 2022;32(1):104–30. doi:10.1080/09602011.2020.1801470.
   PubMed Web of Science ®Google Scholar
• Janssens A, Williams J, Tomlinson R, Logan S, Morris C. Health outcomes for children with neurodisability: what do professionals regard as primary targets? Arch Dis Child. 2014;99(10):927–32. doi:10.1136/archdischild-2013-305803.
   PubMed Web of Science ®Google Scholar
• Kelly G, Dunford C, Forsyth R, Kavčič A. Using child- and family-centred goal setting as an outcome measure in residential rehabilitation for children and youth with acquired brain injuries: the challenge of predicting expected levels of achievement. Child Care Health Dev. 2019;45(2):286–91. doi:10.1111/cch.12636.
   PubMed Web of Science ®Google Scholar
• Pollock A, D’Cruz K, Scheinberg A, Botchway E, Harms L, Amor D, Anderson V, Bonyhady B, Knight S. Family-centred care for children with traumatic brain injury and/or spinal cord injury: a qualitative study of service provider perspectives during the COVID-19 pandemic. BMJ Open. 2022;12(6):e059534. doi:10.1136/bmjopen-2021-059534.
   PubMed Web of Science ®Google Scholar
• Aishworiya R, Kang Y. Including children with developmental disabilities in the equation during this covid-19 pandemic. J Autism Dev Disord. 2021;51(6):2155–58. doi:10.1007/s10803-020-04670-6.
   PubMed Web of Science ®Google Scholar
• Bova S, Basso M, Bianchi M, Savare L, Ferrara G, Mura E, Redaelli MG, Olivieri I, Veggiotti P, Alfei E, et al. Impact of COVID-19 lockdown in children with neurological disorders in Italy. Disabil Health J. 2021;14(2):101053. doi:10.1016/j.dhjo.2020.101053.
   PubMed Web of Science ®Google Scholar
• Lester A, Leach P, Zaben M. The impact of the COVID-19 pandemic on traumatic brain injury management: lessons learned over the first year. World Neurosurg. 2021;156:28–32. doi:10.1016/j.wneu.2021.09.030.
   PubMed Web of Science ®Google Scholar
• Toomey S, Elliott M, Zaslavsky A, Quinn J, Klein D, Wagner S, Thomson C, Wu M, Onorato S, Schuster MA, et al. Improving response rates and representation of hard-to-reach groups in family experience surveys. Acad Pediatr. 2019;19(4):446–53. doi:10.1016/j.acap.2018.07.007.
   PubMed Web of Science ®Google Scholar