Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part II: A qualitative analysis

Abstract Background The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.


| INTRODUC TI ON
Caregivers of individuals with mental health challenges, ranging from general distress to mental disorders, experience higher rates of mental health challenges compared to the general population. 1 Many feel confusion, fear, distress, and a sense of grief regarding their loved one's mental health challenges. Furthermore, caregivers face significant systemic challenges, often lacking the necessary mental healthcare resources; for example, they may face barriers accessing care and navigating changes to service delivery, while also experiencing stigma. [2][3][4][5] Caring for youth with mental health challenges can also present unique challenges, especially as 18%-22% of youth ages 12-17 years old meet the criteria for a mental disorder. 6 Caregivers often undertake unfamiliar roles and responsibilities with regard to supporting their youth, which can generate distress in their own lives. As a result, caregivers of youth with mental health challenges report high rates of caregiver burden, feelings of helplessness and ineffectiveness, and distress. 1,7 Caregivers of youth with mental health challenges can also experience financial strain and heightened stress due to their youth's mental health challenges. 8 In order to support caregivers of youth with mental health challenges, multiple intervention models have been developed. Notably, peer-based programs providing education and support for caregivers have demonstrated positive impacts. [9][10][11] Peer-based programs include a range of interventions entailing interactions between people who share lived experience on a specific issue. 12 In peer-based mental health services, such as peer education and support programs, participants show improved self-reported empowerment and hope along with increased self-esteem. 13,14 Moreover, peer-based programs can be cost-effective. 15,16 Involving peers in health comes with benefits that may not be as prominent in traditional clinical-led models, such as fostering trust and rapport with participants. 11 As a variation of peer-based programs, team-led programs are also available. Team-led programs are co-delivered by peers and mental health professionals together, a model that has also demonstrated benefits. 17 Family Connections (FC) is a manualized peer-based education, skills training, and support program originally created for family members of individuals with borderline personality disorder (BPD). This support model is typically implemented in groups within a community setting and focuses on providing information and skills training to improve family functioning, coping skills, and provide social support. 18 40 The FC model is based on skills and strategies drawn from Dialectical Behavior Therapy (DBT) 19 and includes psychoeducational components, skill-building, and support. It is informed by DBT's biosocial theory, which highlights the transaction between a person's biology (e.g. predisposition to emotional vulnerability) and their developmental environment. Accordingly, the FC group balances support for participants' well-being by teaching them skills to understand their family members and modify their behaviours and responses.
Previous studies evaluating the FC program illustrate benefits ranging from reducing grief levels to improving participants' sense of their knowledge and coping skills and improving family function. 18,[20][21][22] The FC program's impact on participant well-being has mainly been addressed through quantitative studies, focusing predominantly on BPD. 18,20,21,23  Although these studies demonstrate the positive impacts of the FC program in relation to BPD, there is a dearth of information on participants' qualitative experiences of the program, including caregivers supporting youth with mental health challenges outside of the BPD sphere; thus, it remains unclear which elements of the program contribute to these positive outcomes, and whether these findings extend beyond BPD Accordingly, the present study aimed to explore caregivers' experience of an FC program designed for caregivers of youth with diverse mental health challenges, providing a qualitative lens on FC impacts for caregivers outside of the domain of BPD.

| Study setting
This study was part of the Research and Action for Teens (RAFT) study, a multi-pronged, multi-cente program of research that included an effectiveness evaluation of the FC program adapted for caregivers of youth with mental health challenges. The RAFT study was conducted across three cities in Ontario, Canada (Toronto, Ottawa, and Thunder Bay). 18,24 Participants in the RAFT Family study were recruited through flyers, notice boards, and email servers across all three communities to participate in the FC program and associated research project. Inclusion criteria were as follows: (a) 18 years of age or older, (b) literacy in English, (c) family member or caregiver of an adolescent (ages [14][15][16][17][18] scoring in the clinical range on at least one subscale of the Child Behavior Checklist (CBCL), as reported by the participating family member; caregivers reported a variety of youth disorders represented in the sample, and (d) did not have an adolescent child participating in the other arm of the RAFT study providing a youth intervention. Individuals interested in participating received a full description of the study and were screened by a research assistant to determine eligibility. Written informed consent was obtained from participants prior to enrolment.
A quantitative evaluation of the RAFT Family study is provided in a companion manuscript. 25 As part of the RAFT Family study, the current qualitative substudy took place at Toronto and Ottawa sites. The Thunder Bay site was not included in the qualitative study due to logistical issues associated with conducting in-person interviews in this location. In this study, interviews were conducted with participants who took part in the FC program post-treatment. All caregivers actively taking part in the RAFT Family study in Toronto and Ottawa between April 2013 and May 2014 were invited to take partin the qualitative study. All of the interviews were carried out by KW, a psychiatry resident at the time.

| Sample
The sample of the current study consisted of 13 caregivers who participated in the RAFT Family study (Toronto and Ottawa locations) and consented to be interviewed. The invited participants were distributed among the two treatment sites (Toronto = 10; Ottawa = 3).
Of the 13 participants, seven were female, and six were male. The participants ranged in age from 40 to 55. See Table 1 for additional demographic information.

| Intervention
The FC program was based on Fruzzetti & Hoffman's 26 FC program and adapted for family members of youth with mental health challenges. 26 FC is a 12-week group-based intervention traditionally led by trained family members with personal experience supporting a loved one with mental health challenges, in community settings. However, in this study, groups in Ottawa were peer-led in a community-based peer-run organization, while the groups in Toronto were team-led (by a caregiver and a service provider) in a tertiary care center, as an adaptation to meet local organizational requirements to permit implementation. Each group session ran for approximately 90 minutes. All family members received a manual describing the skills covered.

| Data collection
Caregivers took part in semi-structured interviews at the end of the

| Data analysis
The primary a priori defined topic that we examined was the impact of the FC program on caregivers. Data were analyzed using More than $60 000 8 3 Number of family members in household thematic analysis through an interpretive process. 28 All transcripts were analyzed and coded by one member of the research team with relevant lived experience, who was a graduate student at the time.
The codes were refined through collaborative and in-depth discussions, and a consensus of codes was interpreted during the analytical process. Inter-rater reliability was established on 20% of the transcripts with a second coder. The coding process was conducted collaboratively through in-depth discussions among team members with backgrounds in psychology to generate themes and subthemes that guided the interpretation of the data. The analysis closely followed four phases of theme development: (a) initial identification of possible themes; (b) the articulation and construction of themes; (c) relating themes back to existing knowledge; (d) developing a logic or storyline from themes related to our research question. 28 Key quotes were selected from the data and presented to further illustrate findings.
The consolidated criteria for reporting qualitative research (COREQ) guidelines were followed to ensure a comprehensive reporting of our study. 29 Research Ethics Board approval was obtained from the Centre for Addiction and Mental Health (CAMH) and the Royal Ottawa Health Care Group Research Ethics Board. Family members within the RAFT study were engaged as service providers.

| RE SULTS
Our analysis identified three major themes regarding caregivers' experience with the FC program: (a) the intervention increased caregiver's ability to manage their youth's mental health challenges; (b) participating in the program enhanced caregiver's inter-and intrapersonal spheres; (c) caregivers' experience with the program led to proposed improvements to the program. Emerging from the analysis were several subthemes that helped capture the complexity of each key theme as it relates to the FC program.

| Participating in the program enhanced caregiver's inter-and intra-personal spheres
During and after their participation in the FC program, caregivers Reflecting on their experiences after the FC program, caregivers reported feeling more willing to provide frequent support to youth. Some noted that this shift was accompanied by an acknowledgement from their youth that they felt more supported and understood by their caregivers.

| Caregivers' experience with the program led them to propose improvements
Caregivers' experience with the FC program shaped their recommendations around improvements to materials and facilitation, program structure and program components.

| Materials and facilitation
Caregivers expressed appreciation around the psychoeducational materials and style of the facilitators. However, participants also suggested improvements to the group materials. For example, one caregiver expressed wanting to see more examples in the information sheets and handouts paired with the 12-week curriculum.
Another participant suggested having the materials emailed to them prior to the sessions so they could review them in advance.

| Program structure and components
A common suggestion about improving the program was to prolong the length of the sessions and program itself. Some caregivers suggested ideally extending the program past 12 weeks. One respondent shared: I think in the ideal world, you would probably have about 16 of these sessions and then just follow ups, so maybe meetings once a week, or sorry, once a month or something, because you have to keep practicing it.
Because the parents who are in these groups, they're under a lot of stress. Yes, we're there for 2 hours, but our learning capacity is not what it is when we have healthy children. (Participant 13) A few caregivers proposed additional content, such as additional stand-alone sessions on mindfulness and self-care. One participant suggested that time might be reserved at the end of each session to do the assigned homework rather than requiring participants to take it home; they also suggested that even having time after class to simply reflect would be useful. One caregiver shared how they would have enjoyed an FC blog or conference to further discuss the material.
A few caregivers found aspects of the sessions to be overwhelming. For instance, some participants found that listening to other parents' experiences was overwhelming or distressing and brought up emotions they experienced as difficult or painful. They felt that extra supports could be offered to offset this potentially overwhelming experience.
Overall, the majority of caregivers enjoyed the program and would recommend it to others. For instance, one participant shared: I would highly recommend it, just -even if you aren't able to learn the skills, just be in the room with other people who understand your experience. (Participant

2)
Another suggested that the FC program be made more widely available and accessible.

| Strengths and limitations
One of the strengths of this study is that it highlights the experiences of caregivers and their perspectives on both the value and limitations of the FC program through a qualitative approach. Involving family member consultants during the program design and an individual with lived experience during the analysis was also a strength. Moreover, as previous FC studies focus primarily on BPD, this study extends beyond that diagnostic framework to demonstrate benefits among caregivers of youth with mental health challenges in general. Lastly, a unique feature of this study is the integration of both peer-and team-led approaches in community-based and tertiary care settings. The study's positive findings across these models provide insights regarding flexible components to support future implementation efforts.
This study had several limitations. The participant sample was a small and self-selecting group, with limited demographical differences (e.g., ethnic background). Therefore, the sample may not reflect all caregivers participating in the FC programs and limits the generalizability of these findings. Moreover, our participants were chosen from the Toronto and Ottawa locations-both large urban cities. As the FC program runs across Canada, including more remote settings, our participants may not accurately reflect caregivers' experiences in less populated and rural areas. Lastly, the peer-led site had the smallest number of participants; this may limit the extent to which comparisons can be made between delivery models.

| CON CLUS ION
Our findings demonstrate the positive impact of the FC program for caregivers of youth with mental health challenges beyond the previous focus on BPD. Changes in caregiving styles, intra-and interpersonal awareness, and extended models of peer-and team-led approaches all play important roles. These implications highlight the FC program as a promising program that may substantially improve caregivers' lives and should therefore be considered for implementation by organizations serving youth with mental health challenges and their caregivers. Future research on family-based studies should examine barriers and facilitators to flexible implementation and scale-up to bring lasting effects for caregivers.

ACK N OWLED G EM ENTS
We would like to thank our community partners the Ottawa Network for Borderline Personality Disorder, The Children's Centre in Thunder Bay, and the Child, Youth, and Family Program at the Centre for Addiction and Mental Health in Toronto for their assistance and collaboration with this study. We would like to thank Lynn Courey and the Sashbear Foundation for their contributions to the project and Ayah Ellithy for supporting the analyses.

CO N FLI C T O F I NTE R E S T
The authors declare no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request.