Navigators’ Perceptions of Their Work in Childhood Neurodisability: What They Do and What They Call It

References

• Bogdan, R. C., & Biklen, S. K. (2003). Qualitative research in education an introduction to theory and methods (2nd ed.). Allyn and Bacon.
   Google Scholar
• Carter, N., Valaitis, R. K., Lam, A., Feather, J., Nicholl, J., & Cleghorn, L. (2018). Navigation delivery models and roles of navigators in primary care: A scoping literature review. BMC Health Services Research, 18(1), 96. https://doi.org/10.1186/s12913-018-2889-0
   PubMedGoogle Scholar
• Cho, J. Y., & Lee, E. (2014). Reducing confusion about grounded theory and qualitative content analysis: Similarities and differences. The Qualitative Report, 19, 1–10. https://doi.org/10.46743/2160-3715/2014.1028
   Google Scholar
• Doucet, S., Luke, A., Splane, J., & Azar, R. (2019). Patient navigation as an approach to improve the integration of care: The case of NaviCare/SoinsNavi. International Journal of Integrated Care, 19(4), 7. https://doi.org/10.5334/ijic.4648
   PubMed Web of Science ®Google Scholar
• Emerson, E., & Hatton, C. (2007). Mental health of children and adolescents with intellectual disabilities in Britain. The British Journal of Psychiatry, 191(6), 493–499. https://doi.org/10.1192/bjp.bp.107.038729
   PubMed Web of Science ®Google Scholar
• Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., Diaz Linhart, Y., Cesar Levesque, Z., Aebi, M., & Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912–915. https://doi.org/10.1176/appi.ps.201500162
   PubMed Web of Science ®Google Scholar
• Feinberg, E., Augustyn, M., Broder-Fingert, S., Bennett, A., Weitzman, C., Kuhn, J., Hickey, E., Chu, A., Levinson, J., Sandler Eilenberg, J., Silverstein, M., Cabral, H. J., Patts, G., Diaz-Linhart, Y., Fernandez-Pastrana, I., Rosenberg, J., Miller, J. S., Guevara, J. P., Fenick, A. M., & Blum, N. J. (2020). Effect of family navigation on diagnostic ascertainment among children at risk for autism: A randomized clinical trial from DBPNet. JAMA Pediatrics, 175(3), 243–250. https://doi.org/10.1001/jamapediatrics.2020.5218
   Web of Science ®Google Scholar
• Feinberg, E., Kuhn, J., Eilenberg, J. S., Levinson, J., Patts, G., Cabral, H., & Broder-Fingert, S. (2021). Improving family navigation for children with autism: A comparison of two pilot randomized controlled trials. Academic Pediatrics, 21(2), 265–271. https://doi.org/10.1016/j.acap.2020.04.007
   PubMed Web of Science ®Google Scholar
• Freeman, H. P., Muth, B. J., & Kerner, J. F. (1995). Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Practice, 3(1), 19–30.
   PubMedGoogle Scholar
• Gardiner, E., Lin, G., Wong, V., & Miller, A. (2022). Terminology and descriptions of navigation and related practices for children with neurodisability and their families: A scoping review. BMC Health Services Research, 22(1), 214. https://doi.org/10.1186/s12913-022-07617-y
   PubMed Web of Science ®Google Scholar
• Gardiner, E., & Miller, A. (2023). Patient navigation: Core concepts and relevance to the field of pediatric neurodisability. In D. Eisenstat, D. Goldowitz, T. Oberlander, & J. Yager (Eds.), Neurodevelopmental pediatrics: Genetic and environmental influences. Springer.
   Google Scholar
• Guevara, J. P., Rothman, B., Brooks, E., Gerdes, M., McMillon-Jones, F., & Yun, K. (2016). Patient navigation to facilitate early intervention referral completion among poor urban children. Families, Systems & Health, 34(3), 281–286. https://doi.org/10.1037/fsh0000207
   PubMed Web of Science ®Google Scholar
• Hatton, C., & Emerson, E. (2004). The relationship between life events and psychopathology amongst children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 17(2), 109–117. https://doi.org/10.1111/j.1360-2322.2004.00188.x
   Web of Science ®Google Scholar
• Jones, L., Bellis, M. A., Wood, S., Hughes, K. E., McCoy, E., Eckley, L., Bates, G., Mikton, C., Shakespeare, T., & Officer, A. (2012). Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies. Lancet, 380(9845), 899–907. https://doi.org/10.1016/S0140-6736(12)60692-8
   PubMed Web of Science ®Google Scholar
• Luke, A., Luck, K. E., & Doucet, S. (2020). Experiences of caregivers as clients of a patient navigation program for children and youth with complex care needs: A qualitative descriptive study. International Journal of Integrated Care, 20(4), 10. https://doi.org/10.5334/ijic.5451
   PubMed Web of Science ®Google Scholar
• Mansell, J., & Beadle-Brown, J. (2004). Person-centred planning or person-centred action? Policy and practice in intellectual disability services. Journal of Applied Research in Intellectual Disabilities, 17(1), 1–9. https://doi.org/10.1111/j.1468-3148.2004.00175.x
   Web of Science ®Google Scholar
• McDonald, K. M., Schultz, E., Albin, L., Pineda, N., Lonhart, J., Sundaram, V., Smith-Spangler, C., Brustrom, J., Malcolm, E., Rohn, L., & Davies, S. (2014). Care coordination measures atlas (Prepared by Stanford University under subcontract to American Institutes for Research on Contract No. HHSA290-2010-00005I). AHRQ Publication No. 14-0037- EF. Agency for Healthcare Research and Quality.
   Google Scholar
• Miller, A., Gardiner, E., & Rosenbaum, P. (2023) A non-categorical approach to childhood neurodisability: Concepts, evidence and implications for clinical practice, organization of services, teaching, and research. In D. Eisenstat, D. Goldowitz, T. Oberlander, & J. Yager (Eds.), Neurodevelopmental pediatrics: Genetic and environmental influences. Springer.
   Google Scholar
• Miller, A. R., & Rosenbaum, P. (2016). Perspectives on “disease” and “disability” in child health: The case of childhood neurodisability. Frontiers in Public Health, 4, 226. https://doi.org/10.3389/fpubh.2016.00226
   PubMed Web of Science ®Google Scholar
• Morris, C., Janssens, A., Tomlinson, R., Williams, J., & Logan, S. (2013). Towards a definition of neurodisability: A Delphi survey. Developmental Medicine and Child Neurology, 55(12), 1103–1108. https://doi.org/10.1111/dmcn.12218
   PubMed Web of Science ®Google Scholar
• O’Brien, C., O’Brien, J., & Mount, B. (1997). Person-centered planning has arrived … or has it? Mental Retardation, 35(6), 480–484. https://doi.org/10.1352/0047-6765(1997)035<0480:PPHAOH>2.0.CO;2
   PubMedGoogle Scholar
• Ogourtsova, T., O’Donnell, M., & Majnemer, A. (2019). Coach, care coordinator, navigator or keyworker? Review of emergent terms in childhood disability. Physical & Occupational Therapy in Pediatrics, 39(2), 119–123. https://doi.org/10.1080/01942638.2018.1521891
   PubMed Web of Science ®Google Scholar
• Palucka, A. M., & Lunsky, Y. (2012). Working in a trauma-informed way with clients who have a developmental disability. In N. Poole & L. Greaves (Eds.), Becoming trauma informed (pp. 109–120). Centre for Addiction and Mental Health.
   Google Scholar
• Parker, V. A., & Lemak, C. H. (2011). Navigating patient navigation: Crossing health services research and clinical boundaries. Advances in Health Care Management, 11, 149–183. https://doi.org/10.1108/s1474-8231(2011)0000011010
   PubMedGoogle Scholar
• Province of British Columbia. (2021). Multicultural B.C. https://www.welcomebc.ca/Choose-B- C/Explore-British-Columbia/Multicultural-B-C.
   Google Scholar
• Reid, A. E., Doucet, S., & Luke, A. (2020). Exploring the role of lay and professional patient navigators in Canada. Journal of Health Services Research & Policy, 25(4), 229–237. https://doi.org/10.1177/1355819620911679
   PubMed Web of Science ®Google Scholar
• Rollins, M., Milone, F., Suleman, S., Vojvoda, D., Sgro, M., & Barozzino, T. (2019). Patient navigators: Mapping the route toward accessibility in health care. Paediatrics & Child Health, 24(1), 19–22. https://doi.org/10.1093/pch/pxy057
   PubMed Web of Science ®Google Scholar
• Roth, B. M., Kralovic, S., Roizen, N. J., Spannagel, S. C., Minich, N., & Knapp, J. (2016). Impact of autism navigator on access to services. Journal of Developmental and Behavioral Pediatrics, 37(3), 188–195. https://doi.org/10.1097/DBP.0000000000000261
   PubMed Web of Science ®Google Scholar
• Rosenbaum, P., & Gorter, J. (2012). The ‘F-words’ in childhood disability: I swear this is how we should think! Child: Care. Child: care, Health and Development, 38(4), 457–463. https://doi.org/10.1111/j.1365-2214.2011.01338.x
   PubMed Web of Science ®Google Scholar
• Sullivan, P. M., & Knutson, J. F. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24(10), 1257–1273. https://doi.org/10.1016/S0145-2134(00)00190-3
   PubMed Web of Science ®Google Scholar
• Thyen, U., Sperner, J., Morfeld, M., Meyer, C., & Ravens-Sieberer, U. (2003). Unmet health care needs and impact on families with children with disabilities in Germany. Ambulatory Pediatrics, 3(2), 74–81. https://doi.org/10.1367/1539-4409(2003)003<0074:UHCNAI>2.0.CO;2
   PubMedGoogle Scholar
• Valaitis, R. K., Carter, N., Lam, A., Nicholl, J., Feather, J., & Cleghorn, L. (2017). Implementation and maintenance of patient navigation programs linking primary care with community-based health and social services: A scoping literature review. BMC Health Services Research, 17(1), 116. https://doi.org/10.1186/s12913-017-2046-1
   PubMedGoogle Scholar
• Wigham, S., Hatton, C., & Taylor, J. L. (2011). The effects of traumatizing life events on people with intellectual disabilities: A systematic review. Journal of Mental Health Research in Intellectual Disabilities, 4(1), 19–39. https://doi.org/10.1080/19315864.2010.534576
   Web of Science ®Google Scholar
• Wighton, M. B., Doucet, S., Levitt, A., & Sparling, M. (2021, April 15–16). Healthcare navigation: Where are we now and where to next? [Panel presentation]. Canadian Healthcare Navigation Conference.
   Google Scholar
• Young, A., Temple, B., Davies, L., Parkinson, G., & Bolton, J. (2008). Disabled children (0–3 years) and integrated services – The impact of Early Support. Health & Social Care in the Community, 16(3), 222–233. https://doi.org/10.1111/j.1365-2524.2008.00765.x
   PubMed Web of Science ®Google Scholar