696
Views
8
CrossRef citations to date
0
Altmetric
Research Articles

What do parents want from healthcare services? Reports of parents’ experiences with pediatric service delivery for their children with disabilities

, , , , , , , & show all
Pages 2670-2683 | Received 05 Dec 2022, Accepted 21 Jun 2023, Published online: 07 Jul 2023

References

  • Hayes SA, Watson SL. The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013;43(3):629–642. doi: 10.1007/s10803-012-1604-y.
  • Hsiao Y-J. Autism spectrum disorders: family demographics, parental stress, and family quality of life. J Policy Pract Intellect Disabil. 2018;15(1):70–79. doi: 10.1111/jppi.12232.
  • Valicenti-McDermott M, Lawson K, Hottinger K, et al. Parental stress in families of children with autism and other developmental disabilities. J Child Neurol. 2015;30(13):1728–1735. doi: 10.1177/0883073815579705.
  • King G, Rosenbaum P, Goffin R. Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol. 1999;24(1):41–53. doi: 10.1093/jpepsy/24.1.41.
  • Mas JM, Dunst CJ, Balcells-Balcells A, et al. Family-centered practices and the parental well-being of young children with disabilities and developmental delay. Res Dev Disabil. 2019;94:103495. doi: 10.1016/j.ridd.2019.103495.
  • Scime NV, Bartlett DJ, Brunton LK, et al. Parents’ experiences and perceptions when classifying their children with cerebral palsy: recommendations for service providers. Phys Occup Ther Pediatr. 2017;37(3):252–267. doi: 10.1080/01942638.​2016.​1185505.
  • Beckers LW, Smeets RJ, van der Burg JJ. Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress. Disabil Rehabil. 2021;43(8):1185–1192. doi: 10.1080/09638288.2019.1646815.
  • American Academy of Pediatrics. Patient- and family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394–404.
  • Rosenbaum P, King S, Law M, et al. Family-centred service: a conceptual framework and research review. Phys Occup Ther Pediatr. 1998;18(1):1–20. doi: 10.1300/J006v18n01_01.
  • Dempsey I, Keen D. A review of processes and outcomes in family-centered services for children with a disability. Top Early Child Spec Educ. 2008;28(1):42–52. doi: 10.1177/0271121408316699.
  • Salvador Á, Crespo C, Barros L. The benefits of family-centered care for parental self-efficacy and psychological well-being in parents of children with cancer. J Child Fam Stud. 2019;28(7):1926–1936. doi: 10.1007/s10826-019-01418-4.
  • Ding X, Zhu L, Zhang R, et al. Effects of family-centred care interventions on preterm infants and parents in neonatal intensive care units: a systematic review and meta-analysis of randomised controlled trials. Aust Crit Care. 2019;32(1):63–75. doi: 10.1016/j.aucc.2018.10.007.
  • 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 Care Health Dev. 2004;33(1):35–57. doi: 10.1207/s15326888chc3301_3.
  • Almasri NA, An M, Palisano RJ. Parents’ perception of receiving family-centered care for their children with physical disabilities: a meta-analysis. Phys Occup Ther Pediatr. 2018;38(4):427–443. doi: 10.1080/01942638.2017.1337664.
  • 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. doi: 10.1111/dmcn.12347.
  • McCarthy E, Guerin S. Family-centred care in early intervention: a systematic review of the processes and outcomes of family-centred care and impacting factors. Child Care Health Dev. 2022;48(1):1–32. doi: 10.1111/cch.12901.
  • Epley P, Summers JA, Turnbull A. Characteristics and trends in family-centered conceptualizations. J Fam Soc Work. 2010; 13(3):269–285. doi: 10.1080/10522150903514017.
  • Dempsey I, Dunst CJ. Helpgiving styles and parent empowerment in families with a young child with a disability. J IntellectDev Disabil. 2004;29(1):40–51. doi: 10.1080/13668250410001662874.
  • Terp K, Weis J, Lundqvist P. Parents’ views of family-centered care at a pediatric intensive care unit—a qualitative study. Front. Pediatr. 2021;9:725040. doi: 10.3389/fped.2021.725040.
  • King G, Chiarello L. Family-centered care for children with cerebral palsy: conceptual and practical considerations to advance care and practice. J Child Neurol. 2014;29(8):1046–1054. doi: 10.1177/0883073814533009.
  • King G, Williams L, Hahn Goldberg S. Family-oriented services in pediatric rehabilitation: a scoping review and framework to promote parent and family wellness. Child Care Health Dev. 2017;43(3):334–347. doi: 10.1111/cch.12435.
  • Foster TD, Decker KB, Vaterlaus JM, et al. How early intervention practitioners describe family-centred practice: a collective broadening of the definition. Child Care Health Dev. 2020;46(3):268–274. doi: 10.1111/cch.12749.
  • Kokorelias KM, Gignac MA, Naglie G, et al. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019;19(1):564. doi: 10.1186/s12913-019-4394-5.
  • Carrington L, Hale L, Freeman C, et al. Family-centred care for children with biopsychosocial support needs: a scoping review. Disabilities. 2021;1(4):301–330. doi: 10.3390/disabilities1040022.
  • Ridgway L, Hackworth N, Nicholson JM, et al. Working with families: a systematic scoping review of family-centred care in universal, community-based maternal, child, and family health services. J Child Health Care. 2021;25(2):268–289. doi: 10.1177/1367493520930172.
  • An M, Palisano RJ. Family–professional collaboration in pediatric rehabilitation: a practice model. Disabil Rehabil. 2014;36(5):434–440. doi: 10.3109/09638288.2013.797510.
  • Constand MK, MacDermid JC, Dal Bello-Haas V, et al. Scoping review of patient-centered care approaches in healthcare. BMC Health Serv Res. 2014;14(1):271. doi: 10.1186/1472-6963-14-271.
  • Gómez-Cantarino S, García-Valdivieso I, Moncunill-Martínez E, et al. Developing a family-centered care model in the neonatal intensive care unit (NICU): a new vision to manage healthcare. IJERPH. 2020;17(19):7197. doi: 10.3390/ijerph17197197.
  • McCarthy M, Leigh G, Arthur-Kelly M. Telepractice delivery of family-centred early intervention for children who are deaf or hard of hearing: a scoping review. J Telemed Telecare. 2019; 25(4):249–260. doi: 10.1177/1357633X18755883.
  • Arcuri GG, McMullan AE, Murray AE, et al. Perceptions of family-centred services in a paediatric rehabilitation programme: strengths and complexities from multiple stakeholders. Child Care Health Dev. 2016;42(2):195–202. doi: 10.1111/cch.12308.
  • Stefánsdóttir S, Thóra Egilson S. Diverging perspectives on children’s rehabilitation services: a mixed-methods study. Scand J Occup Ther. 2016; 23(5):374–382. doi: 10.3109/11038128.2015.1105292.
  • Jansen SL, van der Putten AA, Vlaskamp C. What parents find important in the support of a child with profound intellectual and multiple disabilities. Child Care Health Dev. 2013;39(3):432–441. doi: 10.1111/j.1365-2214.2012.01381.x.
  • Kiernan G, Courtney E, Ryan K, et al. Parents’ experiences of services for their child with a life-limiting neurodevelopmental disability. Child Care Health Dev. 2020;49(2):134–152. doi: 10.1080/02739615.2019.1605608.
  • Myrhaug HT, Jahnsen R, Østensjø S. Family-centred practices in the provision of interventions and services in primary health care: a survey of parents of preschool children with cerebral palsy. J Child Health Care. 2016; 20(1):109–119. doi: 10.1177/1367493514551312.
  • Alsem MW, Verhoef M, Gorter JW, et al. Parents’ perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services. Child Care Health Dev. 2016;42(4):455–463. Juldoi: 10.1111/cch.12341.
  • Hodgetts S, Nicholas D, Zwaigenbaum L, et al. Parents’ and professionals’ perceptions of family-centered care for children with autism spectrum disorder across service sectors. Soc Sci Med. 2013;96:138–146. doi: 10.1016/j.socscimed.2013.07.012.
  • Williams U, Teplicky R, Rosenbaum P, et al. Family-centredness of a provincial autism programme: a quality assurance evaluation using the measure of processes of care. Child Care Health Dev. 2021;47(4):435–441. doi: 10.1111/cch.12852.
  • Matthews EJ, Gelech J, Graumans R, et al. Mediating a fragmented system: partnership experiences of parents of children with neurodevelopmental and neuromuscular disabilities. J Dev Phys Disabil. 2021;33(2):311–330. doi: 10.1007/s10882-020-09750-0.
  • Galpin J, Barratt P, Ashcroft E, et al. ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum. Autism. 2018;22(5):571–584. doi: 10.1177/1362361316687989.
  • Currie G, Szabo J. ‘It would be much easier if we were just quiet and disappeared’: parents silenced in the experience of caring for children with rare diseases. Health Expect. 2019; 22(6):1251–1259. doi: 10.1111/hex.12958.
  • Russell S, McCloskey CR. Parent perceptions of care received by children with an autism spectrum disorder. J Pediatr Nurs. 2016; 31(1):21–31. doi: 10.1016/j.pedn.2015.11.002.
  • Kerr J, Sharry J, Wilson C. Parents’ experiences of raising adolescents with intellectual or developmental disabilities. J Intellect Dev Disabil. 2023;48(2):206–214. doi: 10.3109/13668250.2022.2057843.
  • Baumbusch J, Mayer S, Sloan-Yip I. Alone in a crowd? parents of children with rare diseases’ experiences of navigating the healthcare system. J Genet Couns. 2019;28(1):80–90. doi: 10.1007/s10897-018-0294-9.
  • Wilson SA, Peterson CC. Medical care experiences of children with autism and their parents: a scoping review. Child Care Health Dev. 2018; 44(6):807–817. doi: 10.1111/cch.12611.
  • Lundeby H, Tossebro J. Exploring the experiences of “not being listened to” from the perspective of parents with disabled children. Scand J Disabil Res. 2008;10(4):258–274. doi: 10.1080/15017410802469700.
  • Hayles E, Harvey D, Plummer D, et al. Parents’ experiences of health care for their children with cerebral palsy. Qual Health Res. 2015;25(8):1139–1154. doi: 10.1177/1049732315570122.
  • Jansen SLG, van der Putten AAJ, Vlaskamp C. Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities. J Intellect Disabil. 2017;21(1):53–67. doi: 10.1177/1744629516641843.
  • Piškur B, Meuser S, Jongmans MJ, et al. The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community. Disabil Rehabil. 2016;38(8):803–812. doi: 10.3109/09638288.2015.1061612.
  • Hlyva O, Rae C, Deibert S, et al. A mixed-methods feasibility study of integrated pediatric complex care: experiences of parents with care and the value of parent engagement in research. Front. Rehabilit. Sci. 2021;2:710335 doi: 10.3389/fresc.2021.710335.
  • Angeli JM, Harpster K, Huijs L, et al. Patient-centered goal setting in developmental therapy: discordance between documented goals and caregiver-perceived goals. Pediatr Qual Saf. 2019;4(4):e199. doi: 10.1097/pq9.0000000000000199.
  • Gao YS. Service providers’ perception of providing Family-Centered care for children with developmental disabilities: a Meta-Analysis. Int J Disabil, Dev Educ. 2023;70(5):722–734. doi: 10.1080/1034912X.2021.1921124.
  • Canadian Institutes of Health Research. 2011). Canada’s Strategy for Patient-Oriented Research. https://cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf.
  • Sandelowski M. Whatever happened to qualitative description? Res. Nurs. Health. 2000;23(4):334–340. doi: 10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G.
  • Bradshaw C, Atkinson S, Doody O. Employing a qualitative description approach in health care research. Global Qualitative Nursing Research. 2017;4:233339361774228. doi: 10.1177/2333393617742282.
  • Chafe R. The value of qualitative description in health services and policy research. Valeur de la description qualitative dans la recherche sur les politiques et services de santé. Healthcare Policy = Politiques de Sante. 2017;12(3):12–18. doi: 10.12927/hcpol.2017.25030.
  • Colorafi KJ, Evans B. Qualitative descriptive methods in health science research. HERD. 2016;9(4):16–25. doi: 10.1177/1937586715614171.
  • Doyle L, McCabe C, Keogh B, et al. An overview of the qualitative descriptive design within nursing research. J Res Nurs. 2020;25(5):443–455. doi: 10.1177/1744987119880234.
  • Pless IB, Pinkerton P. Chronic childhood disorder: promoting patterns of adjustment. London: Kimpton; 1975.
  • Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288. doi: 10.1177/1049732305276687.
  • Jack SM, Phoenix M. Qualitative health research in the fields of developmental medicine and child neurology. Develop Med Child Neuro. 2022;64(7):830–839. doi: 10.1111/dmcn.15182.
  • King G, Tucker MA, Baldwin P, et al. A life needs model of pediatric service delivery: services to support community participation and quality of life for children and youth with disabilities. Phys. Occup Ther Pediatr. 2002;22(2):53–77. doi: 10.1300/J006v22n02_04.
  • King G, Imms C, Stewart D, et al. A transactional framework for pediatric rehabilitation: shifting the focus to situated contexts, transactional processes, and adaptive developmental outcomes. Disabil Rehabil. 2018;40(15):1829–1841. doi: 10.1080/09638288.2017.1309583.
  • 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. doi: 10.1007/s10995-011-0751-7.
  • King G, Batorowicz B, Shepherd TA. Expertise in research-informed clinical decision making: working effectively with families of children with little or no functional speech. Evid-Based Commun Assess Interv. 2008; 2(2):106–116. doi: 10.1080/17489530802296897.
  • Botchway EN, Knight S, Muscara F, et al. Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: a focus on family-centred care, psychosocial wellbeing, and transitions. Neuropsychol Rehabil. 2022;32(4):537–559. doi: 10.1080/09602011.2020.1833945.
  • Gerlach A, Varcoe C. Orienting child-and family-centered care toward equity. J Child Health Care. 2021; 25(3):457–467. doi: 10.1177/1367493520953354.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.