American Psychiatric Association . (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Author.
https://doi.org/10.1176/appi.books.9780890425596 Google Scholar
Arminio, J. L., Hultgren, F. H. (2002). Breaking out from the shadow: The question of criteria in qualitative research. Journal of College Student Development, 43(4), 446–460.
https://muse.jhu.edu/journal/238 Google Scholar
Aston, M., Breau, L., MacLeod, E. (2014). Understanding the importance of relationships: Perspective of children with intellectual disabilities, their parents, and nurses in Canada. Journal of Intellectual Disabilities, 18(3), 221–237.
https://doi.org/10.1177/1744629514538877 Google Scholar
Beighton, C., Wills, J. (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. Journal of Intellectual Disabilities, 21(4), 325–345.
https://doi.org/10.1177/1744629516656073 Google Scholar
Boyce, W. (2001). A seat at the table: Persons with disabilities and policy making. McGill-Queen’s University Press.
Google Scholar
Braun, V., Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
https://doi.org/10.1191/1478088706qp063oa Google Scholar
Braun, V., Clarke, V. (2019). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationale. Qualitative Research in Sport, Exercise and Health, 13(2), 201–216.
https://doi.org/10.1080/2159676X.2019.1704846 Google Scholar
Braun, V., Clarke, V. (2020). One size fits all? What counts as quality practice in (reflexive) thematic analysis. Qualitative Research in Psychology. Advance online publication.
https://doi.org/10.1080/14780887.2020.1769238 Google Scholar
Bray, L., Carter, B., Sanders, C., Blake, L., Keegan, K. (2017). Parent-to-parent peer support for parents of children with a disability: A mixed method study. Patient Education and Counseling, 100(8), 1537–1543.
https://doi.org/10.1016/j.pec.2017.03.004 Google Scholar
Brehaut, J. C., Garner, R. E., Miller, A. R., Lach, L. M., Klasses, A. F., Rosenbaum, P. L., Kohen, E. (2011). Changes over time in the health of caregivers of children with health problems: Growth-curve findings from a 10-year Canadian population-based study. American Journal of Public Health, 101(12), 2308–2316.
https://doi.org/10.2105/AJPH.2011.300298 Google Scholar
British Columbia Ministry of Health . (2007). Planning guidelines for mental health and addiction services for children, youth and adults with developmental disability. Author.
https://www.health.gov.bc.ca/library/publications/year/2007/MHA_Developmental_Disability_Planning_Guidelines.pdf Google Scholar
Bronfenbrenner, U. (1979). The ecology of human development. Harvard University Press.
Google Scholar
Brookman-Frazee, L., Stadnick, N., Chlebowski, C., Baker-Ericzen, M., Ganger, W. (2017). Characterizing psychiatric comorbidity in children with autism spectrum disorder receiving publicly funded mental health services. Autism, 22(8), 938–952.
https://doi.org/10.1177/1362361317712650 Google Scholar
Burton, P., Chen, K., Lethbridge, L., Phipps, S. (2017). Child health and parental paid work. Review of Economics of the Household, 15(2), 597–620.
https://doi.org/10.1007/s11150-014-9251-z Google Scholar
Burton, P., Phipps, S. (2009). Economic costs of caring for children with disabilities in Canada. Canadian Public Policy, 35(3), 269–290.
https://doi.org/10.3138/cpp.35.3.269 Google Scholar
Certeau, M. (1984). The practice of everyday life (Rendall, S. , Trans.). University of California Press.
Google Scholar
Chang, H. (2009). From housewives to activist: Lived experiences of mothers for disability rights in Taiwan. Asian Journal of Women’s Studies, 15(3), 34–59.
https://doi.org/10.1080/12259276.2009.11666072 Google Scholar
Crotty, M. (1998). The foundations of social research: Meaning and perspective in the research process. SAGE.
Google Scholar
Dillenburger, K, Jordan, J., McKerr, L, Keenan, M. (2015). The Millennium child with autism: Early childhood trajectories for health, education and economic well-being. Developmental Neurorehabilitation, 18(1), 37–46.
https://doi.org/10.3109/17518423.2014.964378 Google Scholar
Dion, J. (2017). Falling through the cracks: Canadian Indigenous children with disabilities. International Human Rights Internships Program—Working Paper Series, 5(12), 1–38.
https://www.mcgill.ca/humanrights/files/humanrights/ihri_wps_v5_n12_dion.pdf Google Scholar
Di Pietro, N. C., Illes, J. (2014). Disparities in Canadian Indigenous health research on neurodevelopmental disorders. Journal of Developmental & Behavioral Pediatrics, 35(1), 74–81.
https://doi.org/10.1097/dbp.0000000000000002 Google Scholar
Fereday, J., Oster, C., Darbyshire, P. (2010). Partnership in practices: What parents of a disabled child want from a generic health professional in Australia. Health and Social Care in the Community, 18(6), 624–632.
https://doi.org/10.1111/j.1365-2524.2010.00935.x Google Scholar
Flynn, S., Hastings, R. P., Burke, C., Howes, S., Lunsky, Y., Weiss, J. A., Bailey, T. (2020). Online mindfulness stress intervention for family carers of children and adults with intellectual disabilities: Feasibility randomized controlled trial. Mindfulness, 11, 2161–2175.
https://doi.org/10.1007/s12671-020-01436-0 Google Scholar
Foucault, M. (1975). Surveiller et Punir. Naissance de la Prison [Discipline and Punish: The Birth of the Prison]. Éditions Gallimard.
Google Scholar
Frank, A. (1995). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.
Google Scholar |
Crossref
Gelech, J. M., Bayly, M., Desjardins, M. (2019). Constructing robust selves after brain injury: Positive identity work among members of a female self-help group. Neuropsychological Rehabilitation, 29(3), 456–476.
https://doi.org/10.1080/09602011.2017.1308872 Google Scholar
Gelech, J. M., Desjardins, M. (2011). I am many: The reconstruction of self following acquired brain injury. Qualitative Health Research, 21(1), 62–74.
https://doi.org/10.1177/1049732310377454 Google Scholar
Gelech, J. M., Desjardins, M., Matthews, E. J., Graumans, R. (2017). Why do working relationships not change? The need for a new approach to disability partnership research and social change. Disability & Society, 32(2), 176–192.
https://doi.org/10.1080/09687599.2017.1281104 Google Scholar
Ghoneim, A. A. (2018). Health promotion toolkit: An approach for empowering families caring for children with developmental disabilities in Tabuk. Macedonian Journal of Medical Sciences, 6(8), 1503–1511.
https://doi.org/10.3889/oamjms.2018.265 Google Scholar
Gibson, A. N. (2016). Building a progressive-situational model of post-diagnosis information seeking for parents of individuals with down syndrome. Global Qualitative Nursing Research, 3, 1–11.
https://doi.org/10.1177/2333393616680967 Google Scholar
Global Research on Developmental Disabilities Collaborators . (2018). Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Global Health, 6(10), e1100–e1121.
https://doi.org/10.1016/S2214-109X(18)30309-7 Google Scholar
Good, B. (1994). Medicine, rationality, and experience: An anthropological perspective. Cambridge University Press.
Google Scholar
Goodley, D., Tregaskis, C. (2006). Storying disability and impairment: Retrospective accounts of disabled family life. Qualitative Health Research, 16(5), 630–646.
https://doi.org/10.1177/1049732305285840 Google Scholar
Government of Canada . (2011). Canada’s health care system. Author.
https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/health-care-system.html Google Scholar
Green, S. E. (2007). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64(1), 150–163.
https://doi.org/10.1016/j.socscimed.2006.08.02 Google Scholar
Guyard, A., Michelsen, S. I., Arnaud, C., Fauconnier, J. (2017). Family adaptation to cerebral palsy in adolescents: A European multicenter study. Research in Developmental Disabilities, 61, 138–150.
https://doi.org/10.1016/j.ridd.2016.11.010 Google Scholar
Hartshorne, T. S., Schafer, A. (2018). Parenting children with severe disabilities. The Journal of Individual Psychology, 74(40), 412–436.
https://doi.org/10.1353/jip.2018.0031 Google Scholar
Hsiao, Y. (2018). Parental stress in families of children with disabilities. Intervention in School and Clinic, 53(4), 201–201.
https://doi.org/10.1177/1053451217712956 Google Scholar
Human Resources and Skills Development Canada . (2011). Disability in Canada: A 2006 profile. Catalogue no. HS64-11/2010. Author.
https://www.canada.ca/en/employment-social-development/programs/disability/arc/disability-2006.html Google Scholar
Inclusion Saskatchewan . (2021). Navigating the system: A guide for family members of people with intellectual disabilities (4th ed.). Author.
https://www.inclusionsk.com/resources Google Scholar
Jennings, S. K. (2019). The right to support: Severely disabled children and their mothers [Doctoral dissertation, York University]. Osgoode Digital Commons.
https://digitalcommons.osgoode.yorku.ca/phd/56 Google Scholar
Joshi, G., Petty, C., Wozniak, J., Henin, A., Fried, R., Galdo, M., Kotarski, M., Walls, S., Biederman, J. (2010). The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: A large comparative study of a psychiatrically referred population. Journal of Autism and Developmental Disorders, 40, 1361–1370.
https://doi.org/10.1007/s10803-010-0996-9 Google Scholar
Karim, K., Ali, A., O’Reilly, M. (2014). A practical guide to mental health problems in children with Autistic Spectrum Disorder: It’s not just their autism. Jessica Kingsley Publishers.
Google Scholar
Kearney, M. H. (2001). Levels and applications of qualitative research evidence. Research in Nursing and Health, 24(2), 145–153.
https://doi.org/10.1002/nur.1017 Google Scholar
Kim, J. J., Freeman, S. F. N., Paparella, T., Forness, S. R. (2011). Five-year follow-up of preschoolers with autism and comorbid psychiatric disorders. Behavioral Disorders, 38(1), 57–70.
https://doi.org/10.1177/019874291203800105 Google Scholar
Klein, O., Walker, C., Aumann, K., Anjos, K., Terry, J. (2019). Peer support groups for parent-carers of children with attention deficit hyperactivity disorder: The importance of solidarity as care. Disability and Society, 34(9), 1445–1461.
https://doi.org/10.1080/09687599.2019.1584090 Google Scholar
Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A., Perrin, J. M., Ghandour, R. M., Singh, G. K., Strickland, B. B., van Dyck, P. C. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. American Academy of Pediatrics, 134(5), 1395–1403.
https://doi.org/10.1542/peds.2009-1522 Google Scholar
Lukemeyer, A., Meyers, M. K., Smeding, T. (2000). Expensive children in poor families: Out-of-pocket expenditures for the care of disabled and chronically ill children in welfare families. Journal of Marriage and the Family, 62(2), 399–415.
https://doi.org/10.1111/j.1741-3737.2000.00399.x Google Scholar
Marin, A. (2005). Parents forced to place their children with severe disabilities in the custody of children’s aid societies to obtain necessary care: “Between a rock and a hard place”. Ombudsman Ontario.
https://www.ombudsman.on.ca/resources/reports-and-case-summaries/reports-on-investigations/2005/between-a-rock-and-a-hard-place Google Scholar
Marquis, S. M., McGrail, K., Hayes, M. V. (2020a). Mental health outcomes among parents of a child who has a developmental disability: Comparing different types of developmental disability. Disability and Health Journal, 13(2), 1–8.
https://doi.org/10.1016/j.dhjo.2019.100874 Google Scholar
Marquis, S. M., McGrail, K., Hayes, M. (2020b). Mental health of parents of children with a developmental disability in British Columbia, Canada. Journal of Epidemiology Community Health, 74(3), 173–178.
https://doi.org/10.1136/jech-2018-211698 Google Scholar
Mas, J. M., Gine, C., McWilliam, R. A. (2016). The adaptation process of families with children with intellectual disabilities in Catalonia. Infants and Young Children, 29(4), 335–351.
https://doi.org/10.1097/IYC.0000000000000077 Google Scholar
Matthews, E. J., Gelech, J. M., Graumans, R., Desjardins, M., Gélinas, I. (2021). Mediating a fragmented system: Partnership experiences of parents of children with neurodevelopmental and neuromuscular disabilities. Journal of Developmental and Physical Disabilities, 33, 311–330.
https://doi.org/10.1007/s10882-020-09750-0 Google Scholar
Mattingly, C. (2014). Moral laboratories: Family peril and the struggle for a good life. University of California Press.
Google Scholar |
Crossref
Mattingly, C. (2017). Autism and the ethics of care: A phenomenological investigation into the contagion of nothing. Journal of the Society for Psychological Anthropology, 45(2), 250–270.
https://doi.org/10.1111/etho.12164 Google Scholar
McColl, M. A., Jaiswal, A., Jones, S., Roberts, L., Murphy, C., Cameron, D., Valentine, F. (2001). Disability and federalism: Comparing different approaches to full participation. McGill-Queen’s University Press.
Google Scholar
McColl, M., Jaiswal, A., Jones, S., Roberts, L., Murphy, C. (2017). A review of federal disability policy in Canada (3rd ed.). Canadian Disability Policy Alliance.
Google Scholar
Meyrick, J. (2006). What is good qualitative research? A first step towards a comprehensive approach to judging rigour/quality. Journal of Health Psychology, 11(5), 799–808.
https://doi.org/10.1177/1359105306066643 Google Scholar
Miller, A. R., Masse, L. C., Shen, J., Schiariti, V., Roxborough, L. (2012). Diagnostic status, functional status and complexity among Canadian children with neurodevelopmental disorders and disabilities: A population-based study. Disability & Rehabilitation, 35(6), 468–478.
https://doi.org/10.3109/09638288.2012.699580 Google Scholar
Mitchell, W., Sloper, P. (2001). Quality in services for disabled children and their families: What can theory and research on children’s and parents’ view tell us? Children and Society, 15(4), 237–252.
https://doi.org/10.1002/chi.658 Google Scholar
Moen, P., Wethington, E. (1992). The concept of family adaptive strategies. Annual Review of Sociology, 18, 233–251.
https://doi.org/10.1146/annurev.so.18.080192.001313 Google Scholar
Morrow, G., Malin, N. (2004). Parents and professionals working together: Turning the rhetoric into reality. Early Years: An International Journal of Research and Development, 24(2), 163–177.
https://doi.org/10.1080/0957514032000733019.
Google Scholar
Novick, G. (2008). Is there bias against telephone interviews in qualitative research? Research in Nursing and Health, 31(4), 391–398.
https://doi.org/10.1002/nur.20259 Google Scholar
Nygard, C., Clancy, A. (2018). Unsung heroes, flying blind—A metasynthesis of parents’ experiences of caring for children with special health-care needs at home. Journal of Clinical Nursing, 27, 3179–3196.
https://doi.org/10.1111/jocn.14512 Google Scholar
Olli, J., Vehkakoski, T., Salantera, S. (2014). The habilitation nursing of children with developmental disabilities—Beyond traditional nursing practices and principles? International Journal of Qualitative Studies of Health and Well-being, 9(1), 1–12.
https://doi.org/10.3402/qhw.v9.23106 Google Scholar
Olsson, M. B., Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45(6), 535–543.
https://doi.org/10.1046/j.1365-2788.2001.00372.x Google Scholar
Pals, J., McAdams, D. (2004). The transformed self: A narrative understanding of posttraumatic growth. Psychological Inquiry, 15(1), 65–68.
https://www.jstor.org/stable/20447204 Google Scholar
Pedlar, A., Hutchison, P. (2000) Restructuring human services in Canada: Commodification of disability. Disability and Society, 15(4), 637–651.
https://doi.org/10.1080/09687590050058224 Google Scholar
Petcharat, M., Liehr, P. (2017). Mindfulness training for parents of children with special needs: Guidance for nurses in mental health practice. Journal of Child and Adolescent Psychiatric Nursing, 30, 35–46.
https://doi.org/10.1111/jcap.12169 Google Scholar
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