Continuity of Care in Children’s Mental Health: Parent, Youth and Provider Perspectives

Abstract

Continuity of care, how individuals experience care over time as coherent and linked, is considered an ethical principle of care. While continuity has been examined extensively in the adult health literature, there is a paucity of studies examining continuity in children’s mental health care. Using qualitative semi-structured interviews with parents, youth, and service providers, the current study found themes and issues unique to this healthcare context, such as coordination across sectors; risks to discontinuity, such as transitions; and consequences of discontinuity, such as parents acting as liaisons. Implications of these findings are discussed.

Appendix

Additional Quotes from Participants

Participants quotes are presented under Reid et al.’s (2002) broad categories of relational, informational, and management continuity and within the sub-themes identified within these broad themes.

Relational Continuity

Attachment and Connection

Parents described the relationship as being with the CMH agency as a whole: “I have a better rapport with [Agency] because [Agency’s] workers sit back and let me do my thing. They know my strengths.” A youth expressed his/her experience of immediate connection at intake: “Everybody’s really nice and you feel comfortable, like, pretty much right off the bat.”

Consistency

Many participants discussed consistency with multiple providers within the same agency. “I can’t speak on behalf of other families, [but] my experience has been amazing. I’ve finished with the same workers that I’ve started with.” Providers emphasized consistency of contact as one of the most important aspects of continuity of care. “The number one thing… [is] having the same clinician or worker as much as possible”.

Trust

Trust emerged as a key component of relational continuity. For example, youth felt that “trust is the most important thing.” As one youth expressed, “You can’t expect someone just to open up straight away. You need to earn [my] trust.” Service providers discussed how mandatory reporting of abuse/neglect to child welfare impacted on trust. “I find that can be so damaging to the therapeutic relationship …you’re saying trust me, share your secrets, let’s work on these things; but oh, I need to call the authorities, and report you now.”

Flexibility and Commitment

Parents and youth commented flexibility and commitment of agency staff in meeting their families’ needs, which at times meant making exceptions to rules to better serve them. As a youth described, “I’ve seen [counselor] for a year, and you’re only supposed to be there for three months.” Flexibility was also important from the perspective of service providers: “What I found with [Agency] in the time that I’ve been here is, is that nothing is written in stone… Things go based on what makes sense for the client.”

Relational Continuity Through Transitions

All service providers discussed transitions between intake and the initial assessment or treatment. A provider explained: “We really try to get the person who’s doing the initial consultation to also do the brief intervention, [which creates] wonderful continuity of service for the client.”

A parent described the difficulties her child experienced in transitioning to new providers. “He’s had three different counselors in less than a year, at [Agency], which is very hard for [him].” One youth explained one aspect of the challenge related to transitioning to a new provider: “I had formed a really good relationship with her but then she left. So it was hard for me to open up to a brand new person.”

One parent commented on how well it went when her daughter transferred to a new provider: “they already had somebody waiting for her, which was great.”

Informational Continuity

Sharing information within an agency, and between sectors, emerged as a key theme, which was conceptualized under informational continuity. When informational continuity was lacking, families often took it upon themselves to liaise between providers, and often had to repeat their stories.

Sharing Information Within an Agency

One of the way parents, youth and providers noted that communication was “ongoing” between treatment team members in “weekly rounds or some other form.” A youth noted, “No one was left out of the loop.” Sharing information between agencies, as a provider noted, helped with transitions between providers: “…if I know that family has to transfer to a different program I would work with the clinician… and give some background information and try to do some overlap sessions, just to make it as seamless as possible to the family.”

Sharing Information Between Sectors

One provider’s comment captures the problem of follow through on recommendations made in reports: “you had kids discharged with certain recommendations, [and these] recommendations aren’t followed.” Many parents described how they had to organize meetings in order to share information between different providers. Similarly providers commonly described their efforts at connecting with others involved in care: “I made the effort to make sure everybody knew what everybody else was thinking.” This theme did not emerge with youth.

Repeating Their Story

A parent described the difficulties repeating their sensitive stories: “If you’re going there for sensitive issues that happened to you, you don’t want to be telling different people because it’s private and it’s hard to come out and say what happened to you.” A provider noted the difficulties s/he heard about from families: “I hear from families when they have to go through that process again and [about] the stress of having to tell their stories again to different people.”

Management Continuity

Family and child/youth involvement in treatment, and case management emerged as key themes that were conceptualized under management continuity. Coordination across the various sectors serving families with MH problems was a uniquely important aspect in continuity of children’s MH care.

Family Involvement

Parents involvement varied based on the type of treatment offered and child’s developmental level. Parents of youth were not as involved in their child’s treatment compared to younger children. As a parent expressed, “I don’t know if I’m going to hear any more except for what he chooses to reveal to me… I’m not bitter or anything. It’s good to have another adult perspective that’s not your parent’s.” Youth also varied in their desire to have their family involved. One youth was pleased with his/her family involvement: “Like they go with me every time I go and if I can’t remember an answer, well, they’ll help me remember.” Service providers emphasized the importance of including the family in all aspects of care: “… we don’t make any decisions without the family.” However, if team meetings were during the “9 to 5” day or if families were “so burned out by the time the child gets here” that they “lose that ability to invest.”

Youth Involvement

Youth involvement varied as a function of the problem, and their desire to be involved. For example, a youth explained how with an eating disorders program, there was less opportunity for involvement because of the nature of eating disorders, “…you didn’t have a say because your say would always be, ‘I have an eating disorder.’ So you [would] not get better.”

Case Management

The few parents who mentioned receiving case management/coordination services were satisfied with their coordinators. One parent described a coordinator who worked as a liaison for all of the programs in their city. “He coordinates; tries to get the best help for a child; whatever they need - he’s really, really good.” Another parent described her child’s primary service provider as “the pivotal person in directing, guiding [my child] from this person to that person… she’s been the coordinator of the flow, which has been very good.” One issue raised by a provider was the need to be clear regarding how case managers were assigned: “I think the rule of thumb is, whoever has the most contact with the client is supposed to be the case manager. That doesn’t always happen.”

Coordination

Service providers noted the fragmentation of services across sectors and the different government ministries who provide funding for different sectors. Most providers shared the following perspective on coordination: “You carry that philosophy in your head - your working partnerships are your best strengths in the community and you let those go at your peril.” Yet there was a tension between an “awareness of a need to coordinate” and a “lack [of] resources [and] time to do the ideal.”

Cross-Sector Coordination

Participants discussed how services were coordinated (or not) across children’s MH, education, medical, child welfare and juvenile justice.

Education Sector

Not all parents chose to include the school as part of their child’s treatment. One parent stated that, at her child’s request, she did not disclose to the school personnel any information regarding her child’s MH issues. Other parents, in contrast, expressed frustration with how the school dealt with their child’s behaviour problems. Youth also reported variable experiences with respect to their school’s involvement. For example, a youth described how “The school was really understanding”.

Medical Sector

One parent explained how her FP knew about a program only because his son had been through it. “I’m not sure what my family doctor’s knowledge of the program would have been if he hadn’t had a son going through that.”

Child Welfare

Parents had a range of experiences with the child welfare sector, from very positive to very negative. According to a parent with extensive experience with CMH services, “Years ago CAS offered programming like [this agency] does; the only thing they offer now is policing.” [Children’s Aid Society (CAS) are child welfare organizations within the province of Ontario]. One parent was advised to call CAS for help by a provider at the CMH agency. “Where I’m from… Children’s Aid can come and take your kids away. Now, I have a completely different perception of their services because they’re not there to criticize you… They’re there to point you in a better direction.” While youth did not comment on CAS involvement specifically, a youth in CAS care for most of his/her life described how “they don’t really help me whatsoever.” Several providers alluded different mandates (i.e., child protection), sometimes interfered the ability to work collaboratively. “Sometimes there’s a feeling like our mandates are at cross purposes, and so people come in feeling like we can’t support each other’s work… the safety of the child versus the process of treatment.”