Rural Perspective on Continuity of Care:
Pathways and Barriers to Care for Children
with Emotional and Behavioural Disorders

What is the "Pathways and Barriers to Care" Project?

In December 2001, The Canadian Health Services Research Foundation funded a two-year study examining the issue of access to care for children and youth with emotional and behavioural disorders in rural areas. Specifically, the research is aimed at better understanding the facilitators and barriers to community and hospital-based mental health care in rural and remote communities, from the perspectives of both service providers and families.

Why is this research important?

Research shows clear evidence of unmet need for mental health services for children and youth, including obstacles to access, imperfect screening, and limited use of services. Recent statistics demonstrate that:
  • 20% of Ontario's children and youth under 18 years suffer from a mental health disorder
  • Only one in six children in need of mental health services receives formal treatment
  • It is typically at least two years before appropriate help is received
  • Approximately 80% of families leave treatment before completion

This situation is exacerbated in rural and remote areas where help is not easily accessible due to geographic, economic and cultural factors. An understanding of the pathways to care experienced by family caregivers in rural and remote communities is critical to the development of effective local policy initiatives to improve access to services in rural areas of the province. Furthermore, policies, programs and research efforts that recognize the family perspective will gain valuable information that is attainable in no other way.

What are we doing?

The Rural Pathways Project utilizes qualitative methods to obtain the voice of families and service providers. We conducted interviews with 30 parents who live in the rural catchment areas of Sudbury and Owen Sound and have a child, 4-17 years of age, who has received a diagnosis of an emotional and/or behavioural disorder. As well, 30 service providers in the Sudbury and Owen Sound areas were interviewed, including children’s mental health professionals, private practitioners, policy makers, and community civil servants such as teachers and police officers.

Prior to conducting the individual interviews, four focus groups were held with community stakeholders in the children's mental health system in order to obtain a comprehensive overview of the system and identify issues faced in the delivery of services on a day-to-day basis. Focus group discussions also contributed to the development of a semi-structured interview guide for the individual interviews.

What are we finding?

Preliminary analysis of interview data indicates three overall thematic areas that describe the main barriers and facilitators to care for children and youth in rural and remote Ontario. These include personal, systemic and environmental factors. Barriers to care identified by parents and service providers include the experience of stigma, the difficulty in getting a diagnosis due to the invisibility of the illness, and the lack of public and private transportation. Alternatively, the three main facilitators to care within the thematic categories include "go-getting" (parents acting as advocates for their children), service providers breaking the rules in order to minimize wait lists, and personal relationships that develop in rural environments.

How can you get more information?

In December 2003, the Rural Pathways Final Report will be distributed to key community stakeholders. As well, throughout the project the knowledge gained from the research process is being shared with service providers, policy makers, and other researchers. If you are interested in learning more about the Rural Pathways Project, please contact Dr. Katherine Boydell, The Hospital for Sick Children, (416) 813-8469 or Dr. Raymond Pong, Centre for Rural and Northern Health Research, (705) 675-1151, ext. 4357.

Conference presentations based on this research

(Names in bold denote CRaNHR investigators and research staff.)

Tilleczek, K., K. Boydell, R.W. Pong, T. Volpe, and E. Wilson. "Pathways and Barriers to Mental Health Care for Rural Children and Youth". Poster presented at the 5th International Symposium, "Future of Rural Peoples". Saskatoon, Saskatchewan; October 19-23, 2003.

Volpe, T., K.M. Boydell, R.W. Pong, K. Tilleczek, and E. Wilson. "Pathways to Mental Health Care for Children in Rural and Remote Communities." Workshop presented at Canadian Mental Health Association Making Gains conference. Niagara Falls, Ontario; September 30, 2003.

Boydell, K.M., R.W. Pong, T. Volpe, N. Greenberg, K. Tilleczek, and E. Wilson. "Family Member and Service Provider Perspectives on Pathways to Mental Health Care for Children in Rural Communities." Poster session presented at the 10th Annual Conference of the Center for Research and Training in Family Support and Children's Mental Health. Portland, Oregon; June 26-28, 2003.

Tilleczek, K. "Muted Resilience: Social Paradox and the Health of Northern Children and Youth." Paper presented at Progressive Sudbury Conference, Laurentian University, Sudbury, Ontario; May 2-3, 2003.

Boydell, K.M., R.W. Pong, T. Volpe, N. Greenberg, K. Tilleczek, and E. Wilson. "Rural Realities in Children's Community Mental Health." Presented at the 16th Annual Research Conference: A System of Care for Children's Mental Health: Expanding the Research Base. Tampa, Florida; March 3-6, 2003.

Boydell, K.M., R.W. Pong, T. Volpe, K. Tilleczek, and E. Wilson. "The Rural Experience of Continuity of Care: Results of Community Consultations." Poster presented at Canadian Association of Pediactric Health Centres Annual Conference. Toronto, Ontario; June 9-12, 2002.