Understanding Family-Centered Carein the Mental Health System:

Perspectives From Family Members Caring for Relatives with Mental Health Issues

Introduction

• Family-Centered Care (FCC):

Welcoming and respecting family members as partners in caregiving, program planning, and policy-making (Johnson, 2000).

Definition of Terms

• Family – any significant person in the life of someone with mental health issues

• Mental health issues – wide range of MH conditions that include depression, anxiety, bi-polar disorder, psychosis, schizophrenia, impulsivity

• MH professionals – psychiatrists, psychologists, nurses, social workers, MH clinicians

• MH system – hospital in/out patient, community agencies, MH clinics

Definition of Terms

• Individual discrimination - “negative or disrespectful actions against [people with mental health issues and their families]” (Everett, 2009, p. 5)

• Structural discrimination - policies that intentionally or unintentionally restrict the opportunities of people with mental health problems and their families (Corrigan et al., 2004)

Historical Review

• Perceptions of family involvement fluctuate throughout history due to social, economic, and political factors

• Colonial times in NA, families were primary providers of care (Lefley, 1996; Terkelsen, 1990)

• Late 1800’s - early 1900’s, families blamed for failing to “manage” their “deviant” relatives, and for creating their MH problems, which justified their institutionalization (Jones, 2002; Nichols & MacFarlane, 2001)

Historical Review

• 1950’s – 1960’s – consumers and families advocate for human rights; institutionalization no longer economically or politically viable; people discharged into communities without adequate supports (Bassman, Baker & Packard, 2009; Hatfield, 1997)

• During this time, onus of providing care shifted back to the family, and the concept of FCC emerged

Literature Review

• Research in NA (CAMH, 2004; FMHA, 2006; MAG, 2010; MHCC, 2010) asserts:

– Families play a vital role in relatives’ recovery and need to be supported in that role

• Recommends:

– Collaborative partnerships with families– Provision of quality mental health information,

education, and support– Involvement of families in professional training,

research, and policy-making

Literature Review

According to CAMH, this “requires a shift in organizational practices and in the attitudes and behaviours of individual providers from a model in which professionals are seen as the only people in possession of expert knowledge to a model that is based on knowledge exchange and partnership” (2004, p. 2, emphasis in original).

• FCC being implemented - NAMI psychoeducation and support groups (Dixon et al., 2001, 2004; Drapalski et al., 2008; Lefley, 1996; Pickett et al., 2006).

• FM’s responding favourably (Campbell, 2004, Dixon, 2004; Gerson et al., 2009; Molewyk, 2002, Rethink, 2003).

Literature Review

• Some FM’s still express significant lack of collaboration, information, and support (Ballon, 2009; Buteau et al., 2008; Drapalski et al., 2008; Friesen, 2006; Worthington & Rooney, 2010)

• Client confidentiality (Ballon, 2009; Gonzalez, 2007; O’Grady, 2004) and funding limitations (FMHA, 2006; Martin & Johnson, 2007, Tsao (2008) often blamed for deficiencies

• Little focus in literature on discrimination as an obstacle to providing FCC

Literature Review

• Critical mental health literature argues that FCC contributes to discrimination by absorbing voices of family members into dominant discourses that draw on family responsibility.

• Critical mental health literature: – Baker, 2007; Bassman, Baker & Packard, 2009; Caras,

1998; Friesen, 2006; Jones, 2002.

• Neoliberalism and caregiving:– Brown, 1995; Carey, 2009; Furedi, 2006; Henderson,

2005; Teghtsoonian, 2009.

• Feminization of caregiving:– Canadian Caregiver Coalition, 2008; CMHA, 2004;

Conway et al., 2002; Health Canada, 2004; Pinquart & Sorenson, 2006; Scheyett, 1990.

Literature Review

• CMH argues that this focus on family responsibility has moral and economic implications:

– assumes people with mental health problems are too ill to care for themselves

– shifts burden of care onto “responsible” (often female) citizens

– conceals economic gain – obscures government accountability – constructs “informed” and “empowered” FM’s who are

offered a specific type of information– FM’s may internalize messages of pathology and become

aligned with biomedical, neoliberal agendas– FM’s voices may be silenced and suppressed

Theoretical Perspective

• Critical perspective:– focuses on inequitable distribution of resources (Neuman

& Kreuger, 2003)

• Foucauldian analysis: (Barker, 1998; Chambon, 1999)– Argues that knowledge is socially constructed through

operation of power– Power is often undetected because it is imposed indirectly

• Mechanisms of power include:– Dominant discourse– Binary identity categories– Governmentality

Theoretical Perspective

• Dominant discourses:“structures of knowledge, claims, and practices through which we understand, explain, and decide things” (Parton, 1999, p. 106)

• Binary identity categories:Discourses become internalized to shape identities– Biomedical discourse = scientific knowledge = expert vs. non-

expert – Psychiatric discourse = pathology = functional vs. dysfunctional– Neoliberal discourse = funding limitations = responsible vs.

irresponsible

• Governmentality:The subtle control of individuals through a variety of strategies, the most powerful being the creation of self-regulating, law-abiding citizens (Jeffrey, 2002; Rossiter, 2001).

Method

• Qualitative, exploratory research method• 4 female family members drawn from family

psychoeducation and support group• one hour interview per participant

• Limitations:– small, homogenous, voluntary sample– my personal and professional biases– Study can’t be generalized

Findings

FM = Family MemberCollaboration:

FM4: I probably would like to be included more…They don't seem to be interested in the day to day life and…how is that not of any value?...I just don't

understand that.

FM2: … I think they need to involve the families more…you’re a partner but you’re not really a partner. There’s a definite limitation.

Findings

Information:

FM1: I don’t even know that [the professional] really spoke to us…two minutes probably…I think that was when he was grabbing a coffee….

FM2: …there was no communication during any of the hospital stays. I'm telling you right now. There

wasn't any.

FM4: They would keep us informed, kind of…The very first time, we had an actual talk with…a social worker…but she was no longer there for the second visit…

Findings

Support:

FM1: I think I’m pretty well connected that we were able to get things moving, but the average person? No, how would they know what to do?

FM4: we know a lot of people in the community…it tends to open more doors…otherwise I…didn't know where

to go...

FM1: I think it takes that crisis…we’re talking real crisis, like this is dangerous…to get those supports.

FM2: I was trying to get some help for myself…I felt that I was asking…but nobody was hearing me and… I was desperate…I was in crisis…

Findings

Psychoeducation and Support Groups:

FM2: …it was amazing…just the talking…to know you weren’t alone…led me to believe that there was hope.

FM3: It was like you weren't alone…It was, “oh my gosh! People are actually experiencing the same things I am and it’s okay to feel like this”…

FM4: You think…nobody could know what we’re going through…and then you go to [family psychoeducation and support group] and you realize…there’s so many other people who are going through this too. It is helpful knowing that you’re not alone.

Findings

Respite and Financial Assistance:

FM2: I have a friend…but…she’s never…offered to help if I go away…which I feel I can’t do… and I work full- time and I’m a single mother…so it’s financially

stressful…this economy…it doesn’t help people like us.

Findings

Confidentiality:

FM1: …you are not my client…I am not talking to you, you need to get that.

FM4: Why are they so afraid to actually talk to the caregivers?

FM3: …I guess [the relative] should have that choice…but if a person had cancer…would the family members not be spoken to or not be given the…prognosis at some point?

Findings

Funding Limitations:

FM4: [mental health providers are] overworked and underfunded and they're probably trying to claw the same doors down that I am…but there's nothing you can do.

FM1: [the mental health provider’s] hands were tied…as far as how much service she could provide.

FM3: I know there's a money issue… I wish there was someone higher up that I could write to…

Findings

Discrimination:

FM1: yeah…[The mental health professional] looked at me like, “you are the worst mother”…[he asked] “why don’t you know where he is living?”…and

there was something else he said….like, “you don’t know what he’s been taking?”

FM3: I don't know…I can't really say that I have… one of the assertive things I did was …arrange for [my

relative] to see this [mental health professional] and…[he] was very cool with [my relative]…and I felt it was because he was sort of pushed into the situation…that was the only time I could recall.

Findings

Discrimination:

FM2: no, I don't think so…I think it's just such a dark subject…I've seen definite improvement over the years.

FM4: [the community mental health providers] have been very helpful….but…they’re underfunded and

understaffed…I had appointments and I mean it couldn't be helped, but I'd…leave work and the [provider] I was suppose to see was away or out and that was several times…it was fine…like I said, they’re a little underfunded, and it wasn’t a big deal…

Findings

Apply critical, Foucauldian analysis to explore how dominant discourses construct binary identity categories that create unequal power relations.

Biomedical Discourse

Expert/Non-Expert Identity Categories:

FM1: I was relieved…I was thankful…we knew it was good…they’ll take care of her…

FM4: …such a relief, she’s seeing a psychiatrist…

FM4: …now this is just my opinion, I'm not an expert on it……you start to feel like you’re not knowledgeable. They’re the professionals…

Findings

Psychiatric Discourse

Functional/Dysfunctional Identity Categories:

FM1: We had quite a diagnosis…”dysfunctional family system”…I didn’t feel that we were …

dysfunctional…but in hindsight we were…and westill are…

FM3: At one point the [professional] had…suggested that maybe…I would feel better going on some medication of my own.

Findings

Neoliberal Discourse

Responsible/Irresponsible Identity Categories:

FM2: …I’m a single parent and…what if something happens to me? What will happen to [my relative]?...I’m hoping that…family members are interested. I’m hoping my daughter will be…and my sister.

FM4: I just felt bad for them. I know it wasn’t their fault…and I don’t blame them…

FM2: I know [providers] are busy….very busy people …and I know that everybody does the best they can.

FindingsResistance

Expert/Non-Expert Identity Category:

FM3: After 2 or 3 years…I did go in and I did question [the professional’s] ability…because of the frustration of not seeing [my relative] improve.

FM4: I haven’t…done the degree…but…I have the expert knowledge of what I’m seeing…

FM4: If I'm dying with cancer, I'm going to get a second opinion. And are we not allowed a second opinion in the mental health field? I can't see why not.

FM2: Why can’t they just change psychiatrists?...I have a problem with that.

Findings

Resistance

Functional/Dysfunctional Identity Categories:

I ask if there is any way to frame her family situation as something other than dysfunctional.

FM1: crisis?...yeah…we were in a crisis situation…

Findings

Resistance

Responsible/Irresponsible Identity Categories:

FM3: …there needs to be more support for the caregivers…to help the hospitals…

FM2: I learned more in the…weeks I went to [the support group] than I have in [several] years…but anyway you learn…and it sometimes takes a crisis to learn… and maybe that's my fault…maybe I wasn’t

asking the right questions…I just didn’t know where to go…but…when you don't know…how would you know? There's something just lacking there.

Findings

FM1: I felt kind of like a mothering-pain-in-the-butt…

FM3: I do feel…that I come on too strong…that I’m too assertive…

FM4: It’s not my nature to be overbearing…but we have kind of been out of comfort zone…pressing…

Discussion and Implications

Recommend increased collaboration, information and support

• Does not address acceptance of individual and structural failures as inevitable and unchangeable aspects of the mental health system

• Family members in this study:– Feel involved, informed, supported by limited services– Exonerate mental health providers– Hesitate to assign blame, and if they do, it’s usually

directed at lack of government funding– Assume nothing can be done to improve funding– Blame themselves for not being more knowledgeable– Do not explicitly name discrimination as root cause of

deficiencies– Do not seem to express anger

Discussion and Implications

What can professionals do?

• Transformative work involves understanding processes by which the world is socially constructed to sustain inequality

• Believing that “since these things have been made, they can be unmade, as long as we know how it was that they were made…” (Foucault, 1983, as cited in Chambon, 1999)

• Recognizing “that the present is not natural and need not be taken as inevitable or absolute” (Chambon, 1999, p. 70)

Discussion and Implications

Recommendations for Change:

• Encourage family members and their relatives to ask questions, challenge authority, and expect equality

• Invite family complaints, welcome their anger, and facilitate their participation and leadership at all levels

• Question our own resistance to power-sharing, and our own discomfort with messiness of client and family involvement

• Uncover our own internalized discriminatory beliefs and behaviours

• Contest funding limitations and consider ways to utilize existing resources differently

Exploring Alternatives

• Family-Centered Care Working Groups and Family Councils – To facilitate collaboration, information, education and

support among providers, family members, and consumers

• Family Wellness Recovery Action Planning (FRAP) – Ann Thompson– A practical family self-help wellness recovery education

series

• Mental Health Trialogue Network Ireland (www.trialogue.co)– To increase understanding of MH from diverse

perspectives in respectful roundtable discussions– Draws on collective “expertise” of family members,

consumers, providers, community members

Conclusion

Ultimate goals of this research:

• stimulate critical thinking and discussion

• disrupt ideological aspects of FCC by critically questioning its role in the reproduction of inequality

• highlight complexities of family involvement

• illuminate our potential complicity in the perpetuation of discrimination

• engage in “strategic” participation to promote a more equitable and supportive mental health system

Thank you!

Questions?

smcneil@fourcast.ca