Mothers’ Care- Seeking Journeys for Daughters with depression Sarah Gallant, University of Prince Edward Island Coauthors: Dr. Kate Tilleczek & Dr. Brandi Bell CAHSPR conference, May 24th 2017

Overview Purpose & Significance Research Questions Methodology Main Findings Implications

Purpose & Significance To understand Atlantic Canadian mothers’ experiences in seeking and accessing mental health care for their adolescent daughter’s depression Understanding facilitators and barriers in care to improve the system. Gap in the research Mothers’ voices Depression care-seeking experiences Atlantic Canadian context

Research Questions What are the care-seeking experiences of mothers of adolescent girls with depression in Atlantic Canada? Guiding questions: What power dynamics do mothers experience in the mental health system, education system, and family life while seeking care for their daughters? What supports are needed for mothers of daughters with depression to facilitate their care-seeking journeys?

Study Design Narrative Study Critical/Feminist Interpretive Framework Chronological stories Context Visual methods illustrate interactions, crises, and turning points Narrative and thematic analysis Critical/Feminist Interpretive Framework Gender roles and spoken injustices Power dynamics

Data Collection ACCESS-MH study data sources (secondary analysis): Semi-structured interviews Patient journey mapping *Pseudonym Karen*’s journey map

Main Findings

Narratives & Journey Maps Non-linear journeys and disconnect between systems Problematic wait times Crisis points at hospitals “It's an amazing process though because from a parent's perspective you think that it'll be linear and you'll see this progress and then they're sick and then they're going to get better. But in this case you think they're better and then they dip and come back, so there's a lot of up and downs with it.” -Tanya

Theme: Marginalization & Loss of Control In the mental health system In the education system “[Psychologist] was very hurtful from a parental perspective in that a burden of guilt was placed on us, right off the bat. “This is something you did to your child. You've given your child this problem.” And from a parental perspective, that's devastating.” –Tanya “So they [school staff] try to help to the best of their abilities but there’s such a ... this lack of understanding, and education and knowledge. And it’s so complex from one person to the next on how it affects people… So there’s no one formula of this is what you do if somebody was having a panic attack. And I think just for people to understand that is really difficult.” –Alice

In the family “And even still the other day, you know, [daughter’s grandmother] was like, “Why is she still on that medication?” You know, “It’s been over a year. She doesn’t need to be on that.” I’m like, “She needs to be on that for the rest of her life and that’s what it’s going to be.” You know, she’s like, “Well, I don’t think that’s right.” -Alice

Theme: Becoming Empowered In the mental health system In the education system “I've been pushing kind of back against the system. Not rudely but just trying to speak up more. I started to ask a lot of questions. “Why is it this? Why is it not this? Can you be certain? Can you do a referral anyway?”” -Macy “I said [to principal], “If you had a student that came in here in a wheelchair, you would bend over backwards to make revisions to your programmes so that person is comfortable with their disability.” I said, “Why can't you recognise that mental health issues are also the same debilitating things?” And he was like “Well, I'd never really thought of it that way.”” -Karen

In the family “And I mean, going through this experience has really opened up our relationship… And, I mean, we had a good relationship before but now it’s kind of gone to another level where [my daughter] can talk to me. And I’ve talked to her about my experiences and everything too, where I hadn’t before.” -Alice

Theme: Hope for the Future Consistency Collaboration Youth mental health education “So just having those roundtable discussions is great... But figuring out a way to facilitate it so the parents are feeling supported and are feeling empowered with a plan when they leave that table at the end of the day.” -Alice

“So yes, from the education side of the institutional access to care, I think there really needs to be a better dialogue between the health system and the education system at a systemic level, at an institutional level, to make sure that the care that children are receiving in school, because they are being cared for there as well as being educated, goes with the care that they need for good health.” -Tanya “They’re [hospital staff] trying to get them [youth] out, like they're just trying to get that bed free because they have somebody else that needs to come in. And that's not right, like they need to be looked after - it's not a revolving door. It shouldn't be a revolving door.” -Karen

Conclusion Mothers seeking care for their daughter’s depression experience marginalization and a loss of control in the care-seeking journey, while also fighting to becoming empowered in helping their daughters receive appropriate treatment Mothers’ narratives illustrate the need for more consistency in care, collaborative support, and youth mental health education as factors that would facilitate depression care-seeking journeys in Atlantic Canada

Implications Increase understanding among health providers, educators, and the public of barriers, facilitators, impact of approach to care, & importance of empowerment in care journeys Policy Implications: Create connections between mental health and education systems Family-centered and compassionate approach to mental health care Service navigation for parents More opportunities for youth mental health training for educators

Thank you!