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A Qualitative Exploration of Ontario Caregivers’ Perspectives of Their Role in Navigating Mental Health and/or Addiction Services for Their Youth

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A Correction to this article was published on 10 August 2023

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Abstract

Many youth experiencing mental health and/or addiction (MHA) concerns rely on their caregivers to find and access services. Considering that caregivers often play a significant role in their youth’s treatment trajectory, a descriptive qualitative study was used to explore how caregivers (n = 26) in the Greater Toronto Area perceive their role in navigating MHA care for their youth (ages 13 to 26). The Person-Environment-Occupation model was used to guide the thematic analysis. The findings reveal three main themes (1) the internal experience of caregiving, which describes caregivers’ emotions and thought processes; (2) the external factors impacting the caregiver’s ability to find and access youth MHA services, which explores systemic and social factors that impact navigation; and (3) the demands of the caregiving role. The discussion highlights the importance of supporting the wellbeing of caregivers as they navigate youth MHA services and can provide useful information for healthcare professionals and policy-makers to increase equitable access to youth MHA services.

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Data Availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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References

  1. Children and Youth. Ottawa, ON: Mental Health Commission of Canada, 2020. Available at https://www.mentalhealthcommission.ca/English/what-we-do/children-and-youth. Accessed 14 May, 2021.

  2. Pearson C, Janz T, Ali J. Health at a Glance: Mental and Substance Use Disorders in Canada Ottawa, ON: Statistics Canada. September 2013. Available at https://www150.statcan.gc.ca/n1/pub/82-624-x/2013001/article/11855-eng.pdf. Accessed 18 June, 2021.

  3. Kessler RC, Angermeyer M, Anthony JC, et al. Lifetime prevalence and age-of-onset distributions of mental disorders in the World Health Organization’s World Mental Health Survey Initiative. World Psychiatry 2007; 6(3):168–176. Accessed 18 June, 2021.

  4. Gitterman A. Ontario’s comprehensive mental health and addictions strategy. Report presented at the Child and Youth Mental Health Symposium, Toronto, ON. 2012.

    Google Scholar 

  5. Gulliver A, Griffiths KM, Christensen H. Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review. BMC Psychiatry 2010; 10(1):113–113. Available at https://doi.org/10.1186/1471-244X-10-113. Accessed 14 May, 2021.

  6. Logan DE, King CA. Parental facilitation of adolescent mental health service utilization: A conceptual and empirical review. Clinical Psychology: Science and Practice 2001; 8(3):319–333. Available at https://doi.org/10.1093/clipsy.8.3.319. Accessed 18 June, 2021.

  7. Caring Together: Families as Partners in the Mental Health and Addiction System. Toronto, ON: Canadian Mental Health Association, 2016. Available at https://ontario.cmha.ca/documents/caring-together-families-as-partners-in-the-%20mental-health-and-addiction-system/. Accessed 18 June, 2021.

  8. Health care in Canada: Access our universal health care system. Ottawa, ON: Government of Canada, 2021. Available at https://www.canada.ca/en/immigration-refugees-citizenship/services/new-immigrants/new-life-canada/health-care/universal-system.html. Accessed 4 March, 2023.

  9. Markoulakis R, Weingust S, Foot J, et al. The Family Navigation Project: An innovation in working with families to match mental health services with their youth’s needs. Canadian Journal of Community Mental Health 2016; 35(1):63–66. Available at https://doi.org/10.7870/cjcmh-2016-026. Accessed 14 May, 2021.

  10. Kids Can’t Wait: 2020 Report on Wait Lists and Wait Times for Child and Youth Mental Health Care in Ontario. Toronto, ON: Children’s Mental Health Ontario. Available at https://cmho.org/wp-content/uploads/CMHO-Report-WaitTimes-2020.pdf. Accessed 4 March, 2023.

  11. Looking for Mental Health Services. Toronto, ON: The Centre for Addiction and Mental Health. Available at https://www.camh.ca/en/health-info/guides-and-publications/looking-for-mental-health-services. Accessed 6 March, 2023.

  12. Shanley DC, Reid GJ, Evans B. How parents seek help for children with mental health problems. Administration and Policy in Mental Health and Mental Health Services Research 2008; 35(3):135–146. Available at https://doi.org/10.1007/s10488-006-0107-6. Accessed 14 May, 2021.

  13. Brannan AM, Athay MM, de Andrade ARV. Measurement quality of the Caregiver Strain Questionnaire-Short Form 7 (CGSQ-SF7). Administration and Policy in Mental Health and Mental Health Services Research 2012; 39(1–2):51–59. Available at https://doi.org/10.1007/s10488-012-0412-1. Accessed 27 April, 2022.

  14. Hoenig J, Hamilton MW. The burden on the household in an extramural psychiatric service. In: Freeman HL, Farndale WAJ, (Eds.). New Aspects of the Mental Health Services. London, UK: Pergamon Press, 1967, pp. 612–635. Accessed 27 April, 2022.

  15. Brannan AM, Heflinger CA. Caregiver, child, family, and service system contributors to caregiver strain in two child mental health service systems. Journal of Behavioral Health Services & Research 2006; 33(4):408–422. Available at https://doi.org/10.1007/s11414-006-9035-1. Accessed 27 April, 2022.

  16. Brannan AM, Heflinger CA, Foster EM. The role of caregiver strain and other family variables in determining children’s use of mental health services. Journal of Emotional and Behavioral Disorders 2003; 11(2):77–91. Available at https://doi.org/10.1177/106342660301100202. Accessed 27 April, 2022.

  17. Song K, Markoulakis R, Levitt A. Predictors of strain for Canadian caregivers seeking service navigation for their youth with mental health and/or addictions issues. Health & Social Care in the Community 2022; 30(2):735–743. Available at https://doi.org/10.1111/hsc.13188. Accessed 18 June, 2021.

  18. McCabe KM, Yeh M, Lau A, et al. Racial/ethnic differences in caregiver strain and perceived social support among parents of youth with emotional and behavioral problems. Mental Health Services Research 2003; 5(3):137–147. Available at https://doi.org/10.1023/a:1024439317884. Accessed 27 April, 2022.

  19. O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine: Journal of the Association of American Medical Colleges 2014; 89(9):1245–1251. Available at https://doi.org/10.1097/ACM.0000000000000388. Accessed 9 December, 2022.

  20. Law M, Cooper B, Strong S, et al. The Person-Environment-Occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy 1996; 63(1):9–23. Available at https://doi.org/10.1177/000841749606300103. Accessed 27 April, 2022.

  21. Sandelowski M. Whatever happened to qualitative description? Research in Nursing & Health 2000; 23(4):334–340. Available at https://doi.org/10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g.

  22. Sandelowski M. What’s in a name? Qualitative description revisited. Research in Nursing & Health 2010; 33(1):77–84. Available at https://doi.org/10.1002/nur.20362. Accessed 14 May, 2021.

  23. Markoulakis R, Levitt A. Considerations in developing a feasibility study of a mixed-methods pragmatic randomized controlled trial of navigation for youth with mental health and/or addiction concerns and their families. In: SAGE Research Methods Cases: Medicine and Health. SAGE Publications, Ltd., 2020. https://doi.org/10.4135/9781529742923

  24. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006; 3(2):77–101. Available at https://doi.org/10.1191/147808870. Accessed 14 May, 2021.

  25. Heflinger CA, Brannan AM. Differences in the experience of caregiver strain between families caring for youth with substance use disorders and families of youth with mental health problems. Journal of Child and Adolescent Substance Abuse 2006; 15(3):83–104. Available at https://doi.org/10.1300/J029v15n03_06. Accessed 18 June, 2021

  26. Yatchmenoff DK, Koren PE, Friesen BJ, et al. Enrichment and stress in families caring for a child with a serious emotional disorder. Journal of Child and Family Studies 1998; 7(2):129–145. Available at https://doi.org/10.1023/A:1022935014502. Accessed 27 April, 2022.

  27. McCann TV, Lubman DI, Clark E. First-time primary caregivers’ experience accessing first-episode psychosis services. Early Intervention in Psychiatry 2011; 5(2):156–162. Available at https://doi.org/10.1111/j.1751-7893.2010.00246.x. Accessed 1 June, 2022.

  28. Sadath A, Muralidhar D, Varambally S, et al. Caregiving and help seeking in first episode psychosis: A qualitative study. Journal of Psychosocial Rehabilitation and Mental Health 2014; 1(2):47–53. Available at https://doi.org/10.1007/s40737-014-0013-2. Accessed 1 June, 2022.

  29. Tanskanen S, Morant N, Hinton M, et al. Service user and carer experiences of seeking help for a first episode of psychosis: A UK qualitative study. BMC Psychiatry 2011; 11(1):157–157. Available at https://doi.org/10.1186/1471-244X-11-157. Accessed 1 June, 2022.

  30. Zhou Z, Wang Y, Feng P, et al. Associations of caregiving knowledge and skills with caregiver burden, psychological well-being, and coping styles among primary family caregivers of people living with schizophrenia in China. Frontiers in Psychiatry 2021; 12:631420–631420. Available at https://doi.org/10.3389/fpsyt.2021.631420. Accessed 1 June, 2022.

  31. Monnapula-Mazabane P, Petersen I. Mental health stigma experiences among caregivers and service users in South Africa: A qualitative investigation. Current Psychology 2021; 1–13. Available at https://doi.org/10.1007/s12144-021-02236-y. Accessed 1 June, 2022.

  32. Hopkins L, Kuklych J, Pedwell G, et al. Supporting the support network: The value of family peer work in youth mental health care. Community Mental Health Journal 2021; 57(5):926–936. Available at https://doi.org/10.1007/s10597-020-00687-4. Accessed 1 June, 2022.

  33. Bowles K, Markoulakis R, Weingust S, et al. Family and youth mental health needs and outcomes in a navigation service: A retrospective chart review. Journal of the Canadian Academy of Child and Adolescent Psychiatry 2020; 29(4):218–228. Accessed 1 June, 2022.

  34. Mayberry LS, Heflinger CA. How caregivers make meaning of child mental health problems: Toward understanding caregiver strain and help seeking. Families in Society: The Journal of Contemporary Social Services 2013; 94(2):105–113. Available at https://doi.org/10.1606/1044-3894.4286. Accessed 1 June, 2022.

  35. Myers NAL, Alolayan Y, Smith K, et al. A potential role for family members in mental health care delivery: The family community navigation specialist. Psychiatric Services 2015; 66(6):653–655. Available at https://doi.org/10.1176/appi.ps.201300569. Accessed 1 June, 2022.

  36. Markoulakis R, Bowles K, Chan S, et al. Changes in perception of caregiving experience following caregiver peer support within a mental health and addictions navigation service. Community Mental Health Journal 2021; 58(4):740–748. Available at https://doi.org/10.1007/s10597-021-00879-6. Accessed 27 April, 2022.

  37. Markoulakis R, Turner M, Wicik K, et al. Exploring peer support needs of caregivers for youth with mental illness or addictions concerns in family navigation services. Community Mental Health Journal 2017; 54(5):555–561. Available at https://doi.org/10.1007/s10597-017-0191-y. Accessed 1 June, 2022.

  38. Kowalewski K, McLennan JD, McGrath PJ. A preliminary investigation of wait times for child and adolescent mental health services in Canada. Journal of the Canadian Academy of Child and Adolescent Psychiatry 2011; 20(2):112–119. Accessed 27 April, 2022.

  39. MacDonald K, Ferrari M, Fainman-Adelman N, et al. Experiences of pathways to mental health services for young people and their carers: A qualitative meta-synthesis review. Social Psychiatry and Epidemiology 2021; 56(3):339–361. Available at https://doi.org/10.1007/s00127-020-01976-9. Accessed 27 April, 2022.

  40. Hawke LD, Barbic SP, Voineskos A, et al. Impacts of COVID-19 on youth mental health, substance use, and well-being: A rapid survey of clinical and community samples. The Canadian Journal of Psychiatry 2020; 65(10):701–709. Available at https://doi.org/10.1177/0706743720940562. Accessed 27 April, 2022.

  41. Markoulakis R, Da Silva A, Kodeeswaran S, et al. Youth mental health and/or addiction concerns and service needs during the COVID-19 pandemic: A qualitative exploration of caregiver experiences and perspectives. Child and Adolescent Psychiatry Mental Health 2022;16(1):35. Available at https://doi.org/10.1186/s13034-022-00471-0. Accessed 27 April, 2022.

  42. Boydell KM, Pong R, Volpe T, et al. Family perspectives on pathways to mental health care for children and youth in rural communities. The Journal of Rural Health 2006; 22(2):182–188. Available at https://doi.org/10.1111/j.1748-0361.2006.00029.x. Accessed 27 April, 2022.

  43. Honey A, Alchin S, Hancock N. Promoting mental health and wellbeing for a young person with a mental illness: Parent occupations. Australian Occupational Therapy Journal 2014; 61(3):194–203. Available at https://doi.org/10.1111/1440-1630.12111. Accessed 27 April, 2022.

  44. Rosenzweig JM, Brennan EM, Ogilvie AM. Work-family fit: Voices of parents of children with emotional and behavioral disorders. Social Work 2002; 47(4):415–424. Available at https://doi.org/10.1093/sw/47.4.415. Accessed 1 June, 2022.

  45. Cabassa LJ, Piscitelli S, Haselden M, et al. Understanding pathways to care of individuals entering a specialized early intervention service for first-episode psychosis. Psychiatric Services 2018; 69(6):648–656. Available at https://doi.org/10.1176/appi.ps.201700018. Accessed 1 June, 2022.

  46. Chen FP, Gearing RE, DeVylder JE, et al. Pathway model of parental help seeking for adolescents experiencing first-episode psychosis. Early Intervention Psychiatry 2016; 10(2):122–128. Available at https://doi.org/10.1111/eip.12159. Accessed 1 June, 2022.

  47. Skubby D, Bonfine N, Tracy H, et al. The help-seeking experiences of parents of children with a first-episode of psychosis. Community Mental Health Journal 2015; 51(8):888–896. Available at https://doi.org/10.1007/s10597-015-9877-1. Accessed 1 June, 2022.

  48. Markoulakis R, Chan S, Levitt A. The needs and service preferences of caregivers of youth with mental health and/or addictions concerns. BMC Psychiatry 2020; 20(1). Available at https://doi.org/10.1186/s12888-020-02801-y. Accessed 18 June, 2021.

  49. Rollins M, Milone F, Suleman S, et al. Patient navigators: Mapping the route toward accessibility in health care. Paediatrics & Child Health 2018; 24(1):19–22. Available at https://doi.org/10.1093/pch/pxy057. Accessed 18 June, 2021.

  50. Protecting Youth Mental Health: The U.S. Surgeon General’s Advisory. Washington, DC: U.S. Department of Health and Human Services Office of the U.S. Surgeon General, 2021. Available at: https://www.hhs.gov/surgeongeneral/priorities/youth-mental-health/index.html. Accessed 25 March, 2023.

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Authors and Affiliations

  1. Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada

    Rachel Wong BHSc, MScOT, Anna Podolsky BA, MScOT & Roula Markoulakis PhD

  2. Sunnybrook Research Institute, Toronto, ON, Canada

    Anthony Levitt MD, FRCPC, Andreina Da Silva BA & Roula Markoulakis PhD

  3. Family Navigation Project, Sunnybrook Health Sciences Centre, 1929 Bayview Avenue, RM 205, Toronto, ON, M4G 3E8, Canada

    Anthony Levitt MD, FRCPC & Sugy Kodeeswaran MHSc

  4. Hurvitz Brain Sciences Program, Sunnybrook Health Sciences Centre, Toronto, ON, Canada

    Anthony Levitt MD, FRCPC

  5. Department of Psychiatry, University of Toronto, Toronto, ON, Canada

    Anthony Levitt MD, FRCPC

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  1. Rachel Wong BHSc, MScOT
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  2. Anna Podolsky BA, MScOT
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  3. Anthony Levitt MD, FRCPC
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Correspondence to Roula Markoulakis PhD.

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The Sunnybrook Health Sciences Centre (#040–2018) and University of Toronto (#41719) research ethics boards approved the study.

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Wong, R., Podolsky, A., Levitt, A. et al. A Qualitative Exploration of Ontario Caregivers’ Perspectives of Their Role in Navigating Mental Health and/or Addiction Services for Their Youth. J Behav Health Serv Res 50, 486–499 (2023). https://doi.org/10.1007/s11414-023-09843-6

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