References
- Lach LM, Kohen DE, Garner RE, et al. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil. 2009;31(8):607–618.
- Cohn LN, Pechlivanoglou P, Lee Y, et al. Health outcomes of parents of children with chronic illness: a systematic review and meta-analysis. J Pediatr. 2020;218:166–177.e2.
- Bronfenbrenner U. Ecology of the family as a context for human development: research perspectives. Dev Psychol. 1986;22(6):723–742.
- Cunningham BJ, Rosenbaum PL. Measure of Processes of Care: a review of 20 years of research. Dev Med Child Neurol. 2014;56(5):445–452.
- Kuo DZ, Houtrow AJ, Arango P, et al. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2012;16(2):297–305.
- World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva: world Health Organization; 2017.
- Kleefman M, Jansen DE, Stewart RE, et al. The effectiveness of stepping stones triple P parenting support in parents of children with borderline to mild intellectual disability and psychosocial problems: a randomized controlled trial. BMC Med. 2014;12:191.
- Dunst CJ, Trivette CM. Capacity-building family-systems intervention practices. J Fam Soc Work. 2009;12(2):119–143.
- Dunst CJ, Trivette CM, Hamby DW. Meta-analysis of family-centred helpgiving practice research. Ment Retard Dev Disabil Res Rev. 2007;13(4):370–378.
- Bourke-Taylor HM, Jane FM. Mothers’ experiences of a women’s health and empowerment program for mothers of a child with a disability. J Autism Dev Disord. 2018;48(6):2174–2186.
- Borek AJ, McDonal B, Fredlun M, et al. Healthy parent carers programme: development and feasibility of a novel group-based health-promotion intervention. BMC Public Health. 2018;18(1):270.
- Rosenbaum P. Diagnosis in developmental disability: a perennial challenge, and a proposed middle ground. Dev Med Child Neurol. 2019;61(6):620.
- Young S, Shakespeare-Finch J, Obst P. Raising a child with a disability: a one-year qualitative investigation of parent distress and personal growth. Disabil Soc. 2020;35(4):629–653.
- Miller L, Nickson G, Pozniak K, et al. ENabling VISions And Growing Expectations (ENVISAGE): parent reviewers’ perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability. Res Dev Disabil. 2022;121:104150.
- Rosenbaum P, Gorter JW. The 'F-words’ in childhood disability: i swear this is how we should think! Child Care Health Dev. 2012;38(4):457–463.
- Sameroff AJ. The transactional model of development: how children and contexts shape each other. Washington (DC): American Psychological Association; 2009.
- Rosenbaum PL, King S, Law M, et al. Family-centred service: a conceptual framework and research review. Phys Occup Ther Pediatr. 1998;18(1):1–20.
- Deci EL, Ryan RM. Self-determination. In: Irving BW, W. Edward C, editors. The Corsini encyclopedia of psychology. 4th ed. US: John Wiley & Sons Inc (US), 2010. p. 1–2.
- Bowen DJ, Kreuter M, Spring B, et al. How we design feasibility studies. Am J Prev Med. 2009;36(5):452–457.
- Thorne S. Interpretative description: qualitative research for applied practice. New York (NY): Taylor and Francis; 2016.
- Government of Canada. Ottawa: Guide to knowledge translation planning at CIHR: integrated and end-of-grant approaches; 2015 [cited 2020 Jan 20].
- Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ. 2017;358:j3453.
- Morris C, Janssens A, Tomlinson R, et al. Towards a definition of neurodisability: a Delphi survey. Dev Med Child Neurol. 2013;55(12):1103–1108.
- Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap): a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–381.
- Williams U, Rosenbaum P, Gorter JW, et al. Psychometric properties and parental reported utility of the 19-item 'About My Child’ (AMC-19) measure. BMC Pediatr. 2018;18(1):174.
- Koren PE, DeChillo N, Friesen BJ. Measuring empowerment in families whose children have emotional disabilities: a brief questionnaire. Rehabil Psychol. 1992;37(4):305–321.
- Herbert RJ, Gagnon AJ, Rennick JE, et al. A systematic review of questionnaires measuring health-related empowerment. Res Theory Nurs Pract. 2009;23(2):107–132.
- Dunst CJ, Trivette CM, Hamby D. Technical manual for measuring and evaluating family support program quality and benefits. Asheville (NC): Winterberry Press; 2006.
- McCubbin MA, McCubbin HI, Thompson AI. FHI: Family Hardiness Index. In: McCubbin MA, Thompson AI, editors. Family assessment inventories for research and practice. 2nd ed. Madison: University of Wisconsin; 1986. p. 124–130.
- Hays RD, Bjorner JB, Revicki DA, et al. Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Qual Life Res. 2009;18(7):873–880.
- King S, King G, Rosenbaum P. Evaluating health service delivery to children with chronic conditions and their families: development of a refined Measure of Processes of Care (MPOC-20). Child Health Care. 2004;33(1):35–57.
- QRS International Pty Ltd. NVivo (Version 12). Melbourne, Australia; 2018.
- Thorne S, Kirkham SR, O'Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Methods. 2004;3(1):1–11.
- Dunst CJ, Trivette CM. Parenting Confidence Scale. Asheville (NC): Winterberry Press; 1992.
- Thissen D, Liu Y, Magnus B, et al. Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method. Qual Life Res. 2016;25(1):13–23.
- Bourke-Taylor HM, Lee DA, Tirlea L, et al. Interventions to improve the mental health of mothers of children with a disability: systematic review, meta-analysis and description of interventions. J Autism Dev Disord. 2021;51(10):3690–3706.
- Ogourtsova T, O'Donnell M, De Souza Silva W, et al. Health coaching for parents of children with developmental disabilities: a systematic review. Dev Med Child Neurol. 2019;61(11):1259–1265.
- Pozniak K, Cross A, Babic R, et al. Co-development of the ENVISAGE-Families programme for parents of children with disabilities: reflections on a parent–researcher partnership. Aust J Occup Ther. 2022.
- Bourke-Taylor HM, Joyce KS, Grzegorczyn S, et al. Mental health and health behaviour changes for mothers of children with a disability: effectiveness of a health and wellbeing workshop. J Autism Dev Disord. 2022;52(2):508–521.
- Collins PY, Pringle B, Alexander C, et al. Global services and support for children with developmental delays and disabilities: bridging research and policy gaps. PLoS Med. 2017;14(9):e1002393.