Help - I need somebody: the experiences of families seeking treatment for children with psychosocial problems and the impact of delayed or deferred treatment

Key Implications for Decision Makers

  • Families need assistance in their help-seeking, starting at their point of contact with the "system."A single point of co-ordinated intake for child and youth mental health services may work in larger communities but may not be needed in smaller communities.
  • Cross-sectoral collaboration is essential. Child welfare, schools, physicians, and the justice system need to work to facilitate access to specialized mental health services and in the provision of collaborative care.
  • Families' involvement with other agencies and other sectors, and their service status (for example, waiting for assessment, waiting for treatment) at each agency they have contacted, needs to be routinely assessed when families contact a children's mental health centre.
  • Families who have contact with four or all five of the sectors involved in children's mental health services need help managing co-ordination of care across sectors. Providing these services at the children's mental health centre where families first become involved makes the most sense.
  • About one-fifth of families have "chronic,"ongoing involvement with mental health services. Providing them with ongoing follow-up at regular intervals is better than assuming these children have an acute illness that requires a single treatment.
  • Methods of decreasing barriers to accessing service need to continue. Novel self-help interventions should be tested.
  • The definition of waiting for mental healthcare needs to be refined. Waiting times for specific, core services need to be defined and then tracked.

Executive Summary
The present study examined where and why parents look for help for children with psychosocial problems among parents who had called a children's mental health centre in Ontario. The project aimed to address two broad issues related to access to mental healthcare for children, aged four to 17 years old, with psychosocial problems: 1) How do families access mental healthcare [that is, where (for example, number of agencies) and why (for example, referral) parents seek treatment for children with psychosocial problems]? 2) What are the impacts of poor continuity of care [that is, treatment not being provided in a timely manner as indicated by being on a waiting list, having services deferred, referred elsewhere]?

Approach
A total of 300 parents, recruited from 16 children's mental health centres across Ontario, completed a telephone interview. The interview included standardized measures of child and parental adjustment and family functioning and asked about all contacts with professionals and agencies parents had made during the previous year in an effort to obtain help for their child and services received. Participants had to be the parent or legal guardian of a child aged four to 17 years old.

Findings
Families had a diversity of patterns of involvement across sectors and agencies/professionals. Somewhat surprisingly, parents rather than the system initiated some families' involvement with the juvenile justice system, child welfare, and the school system. Referrals were a major reason why parents contacted specific agencies/professionals. As expected, physicians were the most common source of referrals. However, mental health professionals and school personnel were also common sources of "referrals,"as were family and friends.

Involvement by sector and help-seeking
Most families were in contact with three or more sectors during the previous year, and 15 percent were in contact with four or all five sectors. Within the mental health sector, many families (53 percent) were involved with two or more agencies during the previous year. When help-seeking within the mental health sector was examined on a month-by-month basis, about one-fifth of families had contacted or were involved with multiple agencies in a given month, while a small percent were simultaneously involved with an agency while contacting additional agencies for help. Greater intensity of help-seeking was related to greater child problems and the availability of resources within the community.

Impacts of poor continuity of care
The second broad objective of this project, to examine the impact of poor continuity of care, could not be realized. Parents accessed a variety of services over time from multiple agencies and across multiple sectors. Only one-third of families were waiting for an assessment and/or treatment at the time of the interview. Further, to examine the impact of waiting lists would require assessment of children's or parents' adjustment at the time of contacting an agency and then immediately prior to receiving services. However, data with this level of specificity could not be obtained. For these reasons the current project could not examine the impact of poor continuity when defined as being placed on a waiting list. Given our findings on the complexity of help-seeking and service utilization across families and agencies, it is uncertain if examining the impact of waiting lists on adjustment is the right question to be asked for this population. Examining whether being placed on a waiting list or being deferred increases families' help-seeking efforts and the subsequent costs, for the system and for families, of undergoing assessments at multiple agencies may be more relevant.

Implications
(a) Families need assistance in their help-seeking, starting at their point of contact with the "system."A single point of co-ordinated intake for child and youth mental health services may work in larger communities. In smaller communities, children's mental health centres are best positioned to manage this. (b) Cross-sectoral collaboration is essential. Child welfare, schools, physicians, and the justice system need to work to facilitate access to specialized mental health services and to provide collaborative care. (c) Families' involvement with other agencies and other sectors, and their service status (for example, waiting for assessment, waiting for treatment) at each agency they have contacted, needs to be routinely assessed when families contact a children's mental health centre. (d) Families who have contact with four or all five sectors involved in children's mental health services need help managing co-ordination of care across sectors. Providing these services at the children's mental health centre where families first become involved makes the most sense. (e) About one-fifth of families have "chronic,"ongoing involvement with mental health services. Providing them with ongoing follow-up at regular intervals is better than assuming these children have an acute illness that requires a single treatment. (f) The definition of waiting for mental healthcare needs to be refined. Waiting times for specific, core services need to be tracked at each children's mental health centre. (g) Methods of decreasing barriers to accessing service need to continue. Novel self-help interventions should be tested.