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These conditions arecharacterized by social inequities e.g., sexism, racism, ageism,heterosexism, ableism which influence the type of mental healthproblems women develop and impact on ho

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British ColumbiaCentre of Excellencefor W omen’s Health

Vancouver, BC

C A N A D A

Hearing Voices

Mental Health Care for Women

Women’s

By Marina Morrow with Monika Chappell

British Columbia Centre of Excellence for Women’s Health

BC Ministry of Health

Minister’s Advisory Council on Women’s Health

BC Ministry of Women’s Equality

Hearing Voices

Mental Health Care for Women

Women’s Health Reports

Copyright © 1999 by BC Centre

of Excellence for Women’s Health

All rights reserved No part of this

report may be reproduced by any

means without the written permission

of of the publisher,except by a reviewer,

who may use brief excerpts in a review.

ISSN 1481-7268

ISBN 1-894356-01-2

Lorraine Greaves, Executive Editor Celeste Wincapaw, Production Coordinator Janet Money, Senior Editor

Robyn Fadden, Copy Editor Karin More, Copy Editor Michelle Sotto, Graphic Designer

Main Office

E311 - 4500 Oak Street

Vancouver, British Columbia

RC451.4.W6M66 1999 362.208209711 C99-911035-7

I Acknowledgements 1

II Executive Summary 3

III Context 5

IV Looking Through a Gender Lens 9

A The Social Determinants of Mental Health 9

1 Poverty 11

2 Housing 12

3 Stigma 13

V Women-Centred Mental Health Care 18

A The Principles and Values of Women-Centred 19

Mental Health Care B The Gendered Nature of Caring 20

C Mental Health Care Concerns 23

D Debates 23

E Key Concerns 25

F Barrers Affecting Access to Service Provision 26

G Re-Victimization in the System 28

H Treatment of Choice 31

I Trauma, Violence and Mental Health 33

J Crisis Response/Emergency Services 35

K Case Management/ACT 36

L Inpatient/Outpatient Care and Institutional Care 37

M Vocational/Educational Supports 38

N Pregnancy, Parenting and Mental Health 39

O Substance Use and Mental Health 40

Contents

P Consumer Initiatives and Peer Support 41

Q Family Support 42

VI Diversity Issues 44

A Women Living in Poverty and Low-Income Women 44

B Women of Colour and Immigrant Women 45

C Aboriginal Women 48

D Older Women 50

E Young Women 51

F Lesbian and Bisexual Women 52

G Women with Disabilities 53

H Criminalized Women 54

VII Mental Health Reform 56

A The Mental Health Act 59

B Participatory Policy-Making 61

C Advocacy 63

VIII Visions for the Future 64

VIIII Best Practices for Meeting the Needs of Women in 68

the Mental Health Care System Appendix: Focus Group Research Participant Profiles 73

Women-Centred Mental Health Care Advisory Committee 75

Endnotes 76

References 81

Contents continued

This research was made possible through a unique fundingpartnership between the BC Centre of Excellence for Women’sHealth, the BC Ministry of Health, the Minister’s Advisory Council

on Women’s Health and the BC Ministry of Women’s Equality The

BC Division of the Canadian Mental Health Association providedfinancial administrative assistance to the project’s fieldwork All ofthese partners played an important role in the development of theproject beyond that of financial assistance We would especiallylike to acknowledge the work and commitment of Lorraine Greaves,Marcia Hills and Victoria Schuckel

We would like to acknowledge the extensive work and guidanceprovided by the members of the BC Centre of Excellence forWomen’s Health’s Women-Centred Mental Health Care AdvisoryCommittee: Loren Lee Breland, Corrie Campbell, Lorraine

Greaves, Marcia Hills, Patty Holmes, Sheryl Jackson, PaulineRankin, Sharon Richardson, Reeta Sanatani, Rosalind Savary,Victoria Schuckel, Pam Simpson, Jill Stainsby, Helen Turbett, GinaWallace, Kathleen Whipp, Mary Williams and Laurie Williams Wewould also like to acknowledge the support of the Women andMental Health Reform Discussion Group

Special thanks to Celeste Wincapaw and to all the other women

at the BC Centre of Excellence for Women’s Health who providedtheir support throughout the duration of the project Thanks to ErinBentley for her research assistance and work on the bibliographyand to Janet Money for her work as our editor Thanks also toMichelle Sotto for her graphic design work and to Robyn Faddenand Karin More for their careful proofreading Sasha McInnesgenerously shared information and resources; we thank her forthis and for believing in the critical importance of our work

I

Finally, we would like to thank all

of the individuals who gave theirtime to meet with us and weespecially acknowledge thosewomen who generously sharedtheir personal experiences with

us Their work and lives are thefoundation of this report

Women’s mental health cannot be understood in isolationfrom the social conditions of our lives These conditions arecharacterized by social inequities (e.g., sexism, racism, ageism,heterosexism, ableism) which influence the type of mental healthproblems women develop and impact on how those problems areunderstood and treated by health professionals and by society.

The differences between men’s and women’s experiences ofmental health concerns, and in particular, the links betweensocial conditions and women’s mental health, have been welldocumented.1 There is also an emerging body of literature on theways in which chronic mental health problems develop differently

in women and men (i.e., clinical differences) as well as research

on the connections between women’s mental health status,biology and women’s life cycle stages (e.g., Seeman, 1981 &

1983; Seeman & Lang, 1990) The recognition that mental health

is in part socially determined has led to commitments in somenational and provincial mental health policy frameworks toshift from a bio-medical understanding of mental health towards

a “bio-psycho-social” understanding.2 Additionally, somejurisdictions have singled women out as a group that needsparticular attention (e.g., BC Mental Health Plan, pg 27)

Nevertheless, this shift has yet to be fully realized in mentalhealth policy development and in the delivery of mental healthservices Interviews and focus groups with women who havechronic and persistent mental health problems,3 serviceproviders, women family members and caregivers in BritishColumbia reveal that a gendered analysis of policy and servicedelivery has not been systematically and consistently integratedinto existing policy and service delivery structures Serviceswhich recognize the specific needs of women are often dependent

on the will of individual service providers, and women’s mental

Executive Summary

II

Interviews and focus

groups with women

who have chronic

and persistent mental

reveal that a gendered

analysis of policy and

service delivery has

not been systematically

and consistently

integrated into existing

policy and service

delivery structures.

health planning is ad hoc andunsystematic The implications

of this lack of a genderedanalysis are profound in terms

of consumer satisfaction, clinicaloutcomes and service utilization

Many barriers exist with respect

to advancing a women’s mentalhealth agenda These includeresistance to a genderedunderstanding of mental health

on the part of many policymakers and the rearrangement

of the fiscal and service deliverystructures of health care Werespond to the latter by criticallyexamining the impact of mentalhealth reform on women and byoffering analyses and guidanceregarding the implementation ofthe BC Mental Health Plan

We advocate both change fromwithin and a transformativevision of what mental healthcare can be We recommendreforms that will help the currentsystem better respond to theneeds and concerns of women,and at the same time we

advocate a paradigm shift thatacknowledges the inadequacy

of bio-medical explanations forunderstanding women’s mentalhealth

We advocate both

change from within

and a transformative

vision of what mental

health care can be.

In our work we attempt toadvance the understanding ofwomen’s mental health concerns,and to represent some of thedebates that are currently takingplace in the mental health reformprocess Our research shouldnot be viewed as comprehensive

or the final word, but rather as

an invitation to continue strugglingwith the complexities of the issues

we present

This project emerged from discussions that took place in theWomen and Mental Health Reform Discussion Group at the BCCentre of Excellence for Women’s Health.4 The impetus for thediscussions was the release of the 1998 BC Mental Health Plan.

While members of the Discussion Group appreciated the Plan’sconsideration of the specific needs and concerns of womenwith chronic and persistent mental health problems, they wereconcerned that no mechanisms existed to ensure that the plan’sgoals would be comprehensively carried out The current projectwas designed to assist in the implementation of the Mental HealthPlan as well as to provide a broader understanding of mentalhealth reform and its impact on women

All phases of this project were carried out under the guidance

of a 15-member Project Advisory Group that has representationfrom consumer survivors, service providers, mental healthplanners, researchers and policy makers The project wasconducted with the support of the BC Ministry of Health, the BCMinistry of Women’s Equality, the Minister’s Advisory Council onWomen’s Health, and the BC Centre of Excellence for Women’sHealth

At the outset, the Advisory Group felt it was essential to canvassthe views of a wide-range of stakeholders Plans were developed

to conduct interviews and focus groups with women who havechronic and persistent mental health problems, women familymembers, caregivers, mental health care workers, mental healthplanners, researchers and policy makers The strong leadership

of women consumer survivors on the Project Advisory Group5

facilitated the development of a methodology that ensured thatwomen who have had personal experience within the mentalhealth system6 would be central to the process

A feminist participatory actionframework that was consumer-centred evolved through acollaborative process betweenthe researchers and theProject Advisory Group.7

The experiences of a widerange of mental healthconstituents were used as

an axis point from which tounderstand mental healthreform and the larger structuresgoverning mental health Thisprocess ensured that theframework that emerged grewout of the context of actualexperience with the mental healthcare system as well as out ofrelated literatures and mentalhealth care policies The researchwas therefore “grounded” (Glaser

& Strauss, 1967; Creswell, 1998)

in that the researchers remainedopen throughout the fieldworkprocess to emerging issuesand themes, without fixing rigidly

on categories or frameworksprior to conducting the fieldwork

A triangulated method wasused (Lincoln & Guba, 1985;

Mathison, 1988) which involvedlooking at several data sources(in this case, focus groups,key informant interviews andthe literature and policy review)

simultaneously to better stand the area of study

under-The study involved:

· A critical analysis of literature

to determine current knowledgeand practice with respect towomen and mental health.8

· A critical analysis of existingmental health policy and legisla-tion (e.g., BC Mental Health Plan

and the BC Mental Health Act)

in order to identify whether andhow they integrate the particularconcerns of women consumers.Additionally, “gender lens”

analysis tools9 were examined

to determine their usefulness

as tools for examining mentalhealth policy

· Focus groups and keyinformant interviews Focusgroups were used to canvassthe views of women consumersand a broad range of mentalhealth service providers andwomen family members Keyinformant interviews allowedthe researchers the opportunity

to do in-depth interviews withconsumer advocates, anti-psychiatry activists, mentalhealth planners, policy makersand other key people involved

in the mental health system

Focus Groups

Twenty focus groups were

conducted in eight different

communities Of these groups

12 were conducted with

consumers and the remaining

eight with service providers.10

Women family members and

caregivers were represented

in each community and,

depending on the judgement

of the community developer,

attended either the service

provider group or the consumer

group

Care was taken to represent the

concerns of women consumers

who differ widely in their needs

according to their particular

social positioning (i.e., race,

culture, ethnicity, class, ability,

sexual orientation, age) and life

experiences;11 however, the

primary focus was on women

with serious mental health

challenges.12 For a more

detailed profile of the research

participants see Appendix A

Key Informant Interviews

Individuals were chosen to

represent particular

constituen-cies in the mental health system

(e.g., family advocates, policy

makers), to represent certain

innovative practices (e.g.,women consumers runningsupport groups for women ofcolour and immigrant women,women involved in providingtransitional housing for womenwith mental health issues), and

to represent those in opposition

to the practices generally found

in the mental health system(e.g., anti-psychiatry activists)

Other informants were chosenbecause of their overall knowl-edge and expertise in policymaking and mental health plan-ning either locally or nationally

Twenty key informant interviewstook place

The Research Sites

Research sites were chosenfor geographic representationbut also with particular communi-ties in mind That is, care wastaken to ensure rural and isolatednorthern perspectives as well

as the perspectives of Aboriginalwomen.13

Analysis of Material

The focus groups and keyinformant interviews were audio-taped Detailed notes were taken

by both researchers who attendedeach focus group Field noteswere taken after each session as

a way of reflecting on the cess and the emerging themes.Thematic analysis (Marshal &Rossman, 1995) was used toanalyze the data following aframework outlined by KateMcKenna and Sandra Kirby(1989).

pro-Looking at mental health through a gender lens reveals that bothphysiological and social differences between women and menhave an impact on mental health Research on the connectionsbetween mental health status, biology and women’s life cyclechanges (e.g., menarche and menopause) and on clinicaldifferences between women and men are providing importantcontributions to our understanding of gender and mental health.

In this section we have chosen to focus more closely on thesocial determinants of mental health which have most oftenbeen neglected

A The Social Determinants of Mental Health

Men and women experience mental health concerns in differentways As Pat Fisher indicates:

“Issues of entitlement, power, differing socialization norms,experiences of previous exploitation and abuse, beliefs aboutmale privilege, etc all serve to influence the experience andcourse of women’s mental illness (1998:7).”

Caregiving and family responsibilities, economic insecurityand experiences of violence and abuse are common for women

These and other social conditions influence the ways in whichhelping professionals respond to women, the psychiatricdiagnoses women receive, and women’s ability to accessand beneficially utilize mental health services

For example, studies have found that women use mental healthoutpatient services more often than men (Rhodes & Goering,1994) Usage patterns also differ among diverse groups of womenfor example, some groups of women (i.e., Aboriginal women,immigrant women) may not have sufficient access to mental

Looking Through a Gender Lens

health services (Boyer, Ku &

Shakir, 1997)

Further, studies suggest thatwomen are more often diagnosedwith affective responses,14

personality responses andpost-traumatic stress response(Canadian Mental Health

Association, 1987; Peters, 1999)

A number of American logical studies suggest thatwomen outnumber men on allmajor psychiatric diagnosesexcept antisocial personalityresponse and alcohol abuse(Mowbray, Herman and Hazel,1992; Eaton & Kessler, 1985)

epidemio-Differences in the ways womenfrom diverse ethno-culturalbackgrounds are diagnosedhave also been found (Rodriguez,1993) These diagnostic

variances cannot be explainedsolely by physiological

differences between womenand men In fact, research hasshown that diagnostic tools anddiagnostic processes reflect thesystemic biases (e.g., sexism,racism, classism, heterosexism,ableism and ageism) found insociety more generally (Caplan,

1985 & 1995) The diagnosis

a woman receives can directlydetermine what forms of treat-

ment she is eligible for within themental health system, and willgreatly impact on the type andextent of care she receives

Historically, mental illnesshas been understood using apredominantly bio-medical model.The new BC Mental Health Planrecognizes that this model isinadequate for understandingand responding to mental illnessand recommends a “bio-psycho-social” model (p 17) Our re-search suggests that women’sexperiences of mental illnesscannot be fully understoodwithout reference to the socialenvironment in which they live.This environment is characterized

by social inequities (e.g., sexism,racism, ageism, heterosexism,ableism) For many womensocial conditions of inequity,

in particular experiences ofviolence, precipitated their entryinto the mental health system Inother instances social conditions,especially poverty, createdbarriers to women’s recoveryfrom mental health challenges

Key here is the recognition thatsocial support and access tofinancial resources are determin-ing factors in the type of mentalhealth care a woman can access

Key here is the

in the type of mental

health care a woman

can access.

Diagnoses

Women are more

often diagnosed with

· Poverty is the major buting factor to homelessness

contri-· Poverty makes womeneconomically dependent andtherefore more likely to stay inabusive relationships Combinedwith isolation, this can compoundwomen’s mental health problems

· The poverty of women oftenmeans the poverty of theirchildren

In each community, we heardabout how lack of resourcesfor women made their lives andthose of their children moredifficult The levels of socialassistance mean that womenare only able to access publiclyfunded services, making it almostimpossible for women living inpoverty to access any kind ofcounselling or alternative treat-ments The combined impact of

an unresponsive service systemand inadequate income supportoften results in women losingcustody of their children Thishas a dramatic impact on themental health of both womenand their children

The concerns of young, singlemothers were particularly acute

Often because their education

For example, if a woman isdependent on government-sponsored services, it is morelikely that her mental conditionwill be closely monitored andthat treatment choices will belimited On the other hand, if awoman has financial resources,

it is more likely that she will beable to access private serviceswhich circumvent scrutiny fromgovernment agencies and oftenthe labeling process that occursupon entering the mental healthsystem

1 Poverty

Poverty disproportionatelyimpacts on women (The NationalAction Committee on the Status

of Women, 1997) and therefore

is a major contributing factor towomen’s mental and physicalwell-being For a number ofdifferent reasons poverty has

a dramatic impact on women’sabilities to become well andmaintain that wellness:

· Poverty impacts on women’sabilities to access services,that is, women without financialresources have fewer treatmentchoices

In each community,

we heard about how

lack of resources for

women made their

lives and those of

their children more

difficult.

Violence

Women experience

higher rates of abuse,

more types of abuse

and more severe

abuse than the general

sexual abuse (Women

and Mental Health

Working Group, 1996;

Fisher, 1998, Firsten,

1991)

had been interrupted, theseyoung women had the leastlikelihood of being able to findstable employment.

When women attempt to seek

a level of assistance thatrecognizes the needs of peoplewith mental health problems(i.e., provincial disability benefits)they face myriad obstacles

Provincial ministries continue

to use physical disability as theprimary indicator for socialassistance needs (BC Coalition

of People with Disabilities, 1998)

Massive cuts to social services

in recent years are having direeffects on individuals living inpoverty These conditions aremagnified for women with mentalhealth challenges who oftencannot navigate through thesystem or advocate on behalf

of themselves or their children

Women’s ability to participate intheir communities is diminished

by poverty, and poverty furtherisolates and stigmatizes women

2 Housing

One of the most pressingconcerns for women in orleaving the mental health system

is access to safe, affordable

housing Currently, there is anacute housing crisis in manyregions of British Columbia

The full continuum of housingsupports includes: short termshelters or transition houses,supported housing, family carehomes, housing co-operativesand staffed residential facilities

Many Vancouver women areforced to live fearfully insub-standard apartment hotels

in the downtown core In ruraland remote areas there aresometimes no supportedindependent living spaces,and/or limited access toresidential care facilities

In our focus groups the issue

of safety in housing came uprepeatedly Women spoke abouthow residential care facilities withpredominately male occupantswere uncomfortable for them andabout how there were virtually nowomen-only housing complexesavailable

Women who have been forcedout of their homes because ofthe violence of a male partneroften cannot access transitionshelters, whose mandates mayrestrict them from housing womenwith mental health or substance

In rural and remote

areas there are

Although the data is

mixed on this issue,

women and men appear

to have different mental

health care utilization

patterns For example,

women tend to use

outpatient services more

than men (Rhodes &

Goering, 1994)

use problems, due to concernsabout disruptive behaviour andthe safety of other residents.

Some exceptions exist Forexample, Peggy’s Place inVancouver, and Savard’s House

in Toronto, both of which shelterpsychiatrized women

Women throughout the studyidentified the need for accessible,safe, affordable housing forthemselves and their children

The provincial housing ship recommended by the BCMental Health Plan15 is a goodstep but requires further commit-ment from both the provincialand federal government Fromthe federal end, the CanadianMortgage and Housing Corpora-tion should return to the provision

partner-of social housing to ensurethat the needs of all individualsare met In accordance withrecommendations made at theMental Illness and Pathwaysinto Homelessness conference

in Toronto (January, 1998) anational policy pertaining tohomelessness should bedeveloped which recognizeshomelessness as a determinant

of physical and mental health

3 Stigma

In one of our focus groups

a woman who had been nosed with dissociative identityresponse spoke about how thisdiagnosis had affected her bothwithin and outside of the mentalhealth system While hospital-ized she was ostracized bynurses and other health careprofessionals who were afraid

diag-of her The stigma for this womanran so deep that after revealingher diagnosis in the focus groupduring a discussion about label-ling, she broke down in tears andoffered to leave the group if otherpeople were afraid of her

Mental illness is highly tized in our society Stigma affectsboth men and women but thereare specific effects on women

stigma-Historically, mental illness waslinked to women’s reproductiveorgans and women were thereforeseen as more vulnerable to

mental deterioration Rigidsocietal attitudes about appro-priate female behaviour meanthat non-conforming women areoften labelled as mentally ill

Current societal and individualresponses to women displayingbehaviours which are categorized

Stigma affects both

men and women but

there are specific

serious mental

ill-nesses in women and

men may differ For

example, women are

more prone to changes

in mental health status

as a direct

conse-quence of their biology

and life cycle changes

(Women and Mental

Health Working Group,

1996)

as “mental illness” include fear,misunderstanding and punitive

or paternalistic measures

Women experiencing mentalhealth problems are not com-monly seen as credible personswho deserve respectful andcaring responses Myths aboutthe dangerousness of peoplediagnosed with mental illnessesexacerbate this stigma.16

Stigma extends into the mentalhealth system itself, wherecertain mental illness diagnosesare viewed as less desirablethan others Some of the moststigmatized diagnoses arethose most often given towomen, for example, borderlinepersonality response anddissociative identity response

Mental illness diagnosescommonly serve to limitindividual’s active participation

in the community For example,women in our focus groupsindicated that diagnostic labelshad been used in custody andaccess disputes to discreditthem as mothers

Anti-stigma education modeledafter anti-oppression work

is needed for health careprofessionals and the public

Early education would helpyoung people to grow up withless prejudice against people withmental health challenges Positiveand realistic representations ofthe contributions and recovery

of people with mental healthproblems offers an alternative

to demeaning stereotypes Theincreased participation of womenconsumers in the design of policyand service delivery would help

to reduce stereotypes and mythsabout mental health challenges

Recommendations

· A “social-psycho-bio” frameworkwhich places the first emphasis

on the social determinants ofmental health should be adopted

by all provincial jurisdictions

Already existing frameworkslike the 1993 Canadian Mental

Health Association’s A New

Framework for Support for People with Serious Mental Health Problems and other

Mental Health Promotionframeworks could be useful

in this regard should they porate a gender analysis MentalHealth Promotion is defined bythe Centre for Health Promotionas:

incor-A gender lens which

recognizes the social

“The process of enhancing the

capacity of individuals and

communities to take control

over their lives and improve

their mental health Mental health

promotion uses strategies

that foster supportive

environ-ments and individual resilience,

while showing respect for equity,

social justice, interconnections

and personal dignity (Willinsky &

Pape, 1997:3).”

Mental Health Promotion reflects

a paradigm shift in mental health,

away from a focus on illness to

a focus on wellness and how to

maintain and foster mental health

The focus in Mental Health

Promotion on the individual’s

social environment and on equity

and social justice is consistent

with the social determinants

approach to mental health we

are recommending

· Gender mainstreaming and the

development of a women’s mental

health agenda

The social determinants of

physical health are increasingly

being recognized at a

policy-making and health-planning

level (e.g., BC Ministry of

Health and Ministry Responsible

for Seniors, 1995 & 1998)

Additionally, gender lens toolswhich are used to analyze theimpact of policies on womenare increasingly being adopted bypolicy makers throughout Canada

A gender lens which recognizesthe social determinants of mentalhealth needs to be applied system-atically to mental health policiesand planning Gender lens toolsare limited, however, if they are notaccompanied by education and aparticipatory policy structure17

which allows formalized tions among different mental healthconstituents The use of a speciallens for policy analysis has beendescribed as restricting the analy-sis to the content or “actual ingre-dients” of a policy: its goals, valuesand benefits (Wharf, 1998: 52)

interac-These approaches give limitedattention to how policies actuallyemerge and why they have devel-oped the way they have (Wharf,1998) A process approach whichcombines gender lens tools witheducation and participatory policymaking is therefore necessary

Through the use of a gender lens,issues specific to the experiences

of women and men emerge Werecommend that these issues

be documented and those thatpertain to women be developed

into a women’s mental healthagenda This agenda wouldprioritize the full range of diversewomen’s mental health concerns

so that they can be addressedsystematically

© 1999 British Columbia Centre of Excellence for Women’s Health

In this section we examine our research participants’ specificconcerns about mental health care These concerns led us tothink about how models of women-centred care based on afeminist ethic of caring (e.g., Taylor & Dower, 1997; DiQuinzo

& Young, 1997) might be useful for the mental health system

In order to address these concerns we make specific mendations which pertain to each care issue raised Theserecommendations are meant to reflect the women-centredmental health care values and principles that we outline below

recom-The general principles of a women-centred care model include: 18

· Recognition of women’s diversity

· Recognition of women’s self-determination and autonomy

· Recognition of women’s strengths rather than a focus onnegative stereotypes

· Recognition of the value of women and their lived experiences:being listened to and believed

· Recognition of the interconnections between physical, mentaland spiritual health

· Recognition of the ways in which male physiology andbehaviour have been used as the norm for understandingphysical and mental health and how it is inappropriate to applythese understandings to women

· Provision of continuity of care

· Provision of options to utilize women-only services and toaccess women caregivers

· Recognition of women’s roles as mothers and caregivers

includ-Women-Centred Mental Health Care

V

ing the provision of child care

to allow women better access

to a wider range of services

We recommend the adoption ofthese principles in addition tothe principles and values ofwomen-centred mental healthcare that we present below

These principles and valueshave been derived throughconsultation with the diverseconstituencies of women wespoke with

A The Principles and Values of Women-Centred Mental Health Care

· Recognition that the stigmasurrounding mental illness hasspecific effects on women

· Recognition of the socialdeterminants of mental healthand their impact on womenacross the life span

· Recognition of the role ofphysical and sexual abuse inwomen’s and girls’ lives and howthis impacts on mental health

· Recognition of how inequitiesthat oppress women arereproduced in mental healthcare policy and service designand delivery

· Recognition that women must

be actively involved in decisionmaking around their treatment andmust have a choice of treatments

· Recognition of the important role

of self-help and peer support

· Recognition that women withmental illness diagnoses often

do not have access to existingwomen-centred services

· A new language which lates a shift in focus to wellnessand the process of healing

articu-· Equal access for all women tomental health care

· Recognition that women carrythe burden of caregiving

These principles should be used

to guide the development ofservices and as the basis forservice-provider education Forexample, training on women’smental health challenges would

be part of the curriculum forprofessionals and they wouldreceive training updates yearly.19

Women consumer survivorswould help to develop, implementand monitor training

In developing and implementingwomen-centred mental healthcare, the diversity of women must

These principles

and values have

been derived through

be recognized Diversity amongwomen means that not all womenwill experience mental healthproblems and the mental healthsystem in the same way There-fore, the particularities of

women-centred approaches tomental health care in jurisdictionsthroughout Canada must bederived through consultationwith diverse constituencies ofwomen

Although some of the women

we spoke with had not foundfeminist service organizationshelpful, women’s use of feministservices which often standoutside of the traditional mentalhealth system (e.g., transitionhouses, immigrant women’sorganizations, ElizabethFry Society, etc.), suggeststhat women are receivingmental health care from under-acknowledged sources Thispattern provides clues to whatalternative support models might

be useful for women Serviceswhich recognize the socialdeterminants of health, respect

a woman’s privacy, securityand social support needs arenecessary Feminist organi-zations that are working fromwomen-centred care models can

play a critical role in maintainingwomen’s mental health and should

be formally recognized Alliancesand “cautious”20 partnershipsneed to be drawn between womenconsumer survivors, feministfront-line workers and mentalhealth care providers

B The Gendered Nature

of Caring

In any discussion of centred care it is critical toacknowledge that much of thecaregiving of individuals withserious mental health challenges

women-is carried out informally by familymembers who are most oftenwomen This is particularlytrue as governments transferresponsibilities for health services

to the community Women often dothis work in addition to all theirother caregiving responsibilities(of children, male partners andageing parents) As EvelynDrescher, the author of a recentCanadian report on women’sunpaid work indicates, “Thereluctance to call ‘caring’ and

‘caregiving’ WORK is perhapsone of the most critical factors

in reinforcing the notion thatcaregiving is a private ratherthan public or collective social

members who are

most often women.

© 1999 British Columbia Centre of Excellence for Women’s Health

responsibility” (1998:1) Further,she indicates:

“Without a framework foranalysis informed by an under-standing of unpaid work as astructural economic issue,

‘caregiving’ will continue to berelegated to ‘soft’ social policydiscussions and welfare models

This will result in caregivers andtheir ‘dependents’ at best being

‘taken care of’ within publicpolicy Unpaid caregivers willremain ‘dependents’ or indeed,

‘social parasites’ rather thanstakeholders who should haveaccess to social resources as aright of their work This argumentbears directly on our understand-ing of the rights of citizenship, not

to mention economic rights ashuman rights (Drescher, 1998:1).”

Drescher’s analysis is highlyrelevant to our understanding ofmental health reform and itsparticular economic impact onfamily members and caregivers

Specifically, it resonates with ourparticipants’ views that thegovernment has a responsibility

to caregivers and cannot simplydownload care responsibilities tofamily members without adequatefinancial resources and support

In looking at mental health issues

as they relate to family membersand caregivers it is necessary

to take into account their faceted roles which include:

multi-· Caregiving and support to one ormore family members with mentalhealth problems

· Advocacy in the mental healthsystem for family members whohave mental health challenges

· Acting as key “stakeholders”who can help formulate policy andservice delivery responses in themental health system

· Acting as consumers who havespecific needs for support withrespect to their caregiving roles

Recommendation

A gender lens should be applied

to any work related to ing family support and caregiving.Applying a gender lens to theseissues will allow for:

understand-· A better understanding of who isproviding care to individuals withmental health problems and underwhat conditions

· A better understanding of thephysical, mental, financial andbroader economic costs of caring

· The development of

recom-mendations that will best meet

the needs of both male and

female family members and

caregivers

C Mental Health Care

Concerns

The perspectives of service

providers, women caregivers and

consumers surrounding mental

health care and the delivery of

services sometimes overlapped

and at other times differed In

some instances the views of one

group directly conflicted with the

views of another Intra-group

differences were also apparent

There was agreement among all

of our respondents that women’s

needs were not being met in the

current system, especially those

needs related to women’s past

experiences of violence and

trauma and the need for women

to have a wider range of support

and treatment options Service

providers, women and caregivers

gave many examples of how

the care women receive is

fragmented and does not address

their needs as whole persons

Although some women had

positive experiences, they were

largely dependent on the

know-ledge and support of individualservice providers In otherwords, care that is sensitive

to the concerns and life ences of women is unsystematicand ad hoc

experi-D Debates

A number of debates wereapparent in our study Acknowl-edging these debates andfinding ways to work with thesedifferences is a critical component

of mental health reform Here wedraw out three of the debatesthat emerged in our study Howthese debates are materializedwill become apparent in ourdiscussion of care concerns

Debates about where resources in mental health should be focused

Service providers and consumersurvivors expressed concernsthat mental health reform, specifi-cally the focus on “serious mentalillness” in the BC Mental HealthPlan, would mean that somegroups of women would be unable

to access services and support

Many of our respondents wereconcerned that restricting servicemandates would mean that somewomen with serious mental healthproblems would “fall through the

cracks” and that their illnesswould be exacerbated as aresult of not being able toaccess services At issue here

is how “seriously mentally ill”21

is defined and who makes thisdetermination Our respondentswere particularly concernedthat commonly used diagnosticcriteria for accessing serviceswould exclude care to womensuffering major mental healthproblems as a result of thingslike borderline personalityresponse

Despite the fact that theconsumers in our focus groupshad diagnoses of major mentalillness, they still advocated thatthe mental health system have

a broader mandate in order tohelp prevent the development

of serious mental health lems Some of our respondents,however, felt that since themental health system in recenttimes has ignored the needsand concerns of people withchronic and persistent mentalillnesses that it was essential thatresources be re-allocated

of fiscal constraint

Debates about involuntary treatment

These debates centre on whether

or not there are ever situations

in which it is appropriate to forcetreatment on an individual and theextent to which the governmentshould legislate and regulateinvoluntary treatment This debatemost often arises in situationswhere individuals who have beendiagnosed with a mental illnessdecide to forgo treatment and areperceived by their caregiversand/or family members to have apoorer quality of life as a result ofrefusing treatment This debate

is heightened in situations whereindividuals are seen to be adanger to themselves or others

On the other side of this debateare many psychiatrized womenwho feel that forced treatmentoverrides their civil and humanrights and is a paternalistic andsocially controlling response toindividual choices about psych-iatric treatment and lifestyle

Debates about the utility of a

bio-medical model for

under-standing mental health problems

There is a wide range of both

experiential and clinical debate

about the utility of the bio-medical

model with its attendant use

of psycho-pharmaceuticals for

understanding and treating

mental illness The majority

of our participants felt that a

combination of biological, social

and psychological explanations

are needed to understand

mental health problems These

respondents were most often

in favor of the availability of a

wide range of treatment options

for women

Anti-psychiatry activists, on

the other hand, draw attention

to the predominance of the

bio-medical paradigm and the

ways in which the practice of

psychiatry is interdependent with

the pharmaceutical industry

These individuals often reject

the use of medication and other

traditional psychiatric treatments

In this section, we begin with

a brief summary of the concerns

raised by each group of our

research respondents

(caregivers, service providers

and consumers) This summary

is followed by a more detaileddiscussion of the concerns mostoften raised by our respondents

Barriers to accessing services,re-victimization in the system,treatment of choice and theimpact of violence and trauma

on mental health emerged as themost significant issues overall

In each of these sections theperspectives of consumersurvivors, service providers andwomen caregivers are integrated

E Key Concerns

Key Concerns for Women Consumers

· Barriers to accessing services

· Re-victimization in the system

anti-violence workers and mentalhealth workers

Key Concerns for Caregivers/

· Recognition that the burden

of caregiving falls to women

F Barriers Affecting Access to Service Provision

One woman who had adual diagnosis (i.e., dissociativeidentity response/bi-polar

response) indicated that twosignificant barriers existed forher One was that because ofthe lack of understanding, skillsand experience in treating mul-tiple or dissociative responses,many mental health careprofessionals were hesitant tohelp her Additionally, she hadbeen turned down for care bythe local mental health team whoperceived her as high-functioningand able to manage her owncase Although this had given her

a lot of control over her own

situation, she indicated that

in times of crisis she reallyneeded support that she couldnot access: “When I need help,

I NEED help I need to build arelationship with my generalpractitioner now so that when Isay I need help, that door doesn’tclose.”

Women in our focus groupsentered the mental health system

in a variety of ways Most oftenwomen came in through anemergency crisis (e.g., hospitaladmission or hospital emergencyroom) although some womenwere also referred by a generalpractitioner

Under-service

Women in our focus groups spokeabout how they had been refusedtreatment or about how they feltunder-served by the mental healthsystem In many cases this

appeared to be a result of theparticular mandates of services.For example, some womensuffering from serious mentalhealth problems told stories aboutbeing turned away from emer-gency because they did not fitcommonly used diagnostic criteriafor accessing services

concerns they had

about their mental

well-being were often

trivialized or reduced

to their physiology

as women.

This barrier appears, in part, toresult from the focus of currentmental health resources onindividuals who are diagnosedwith “serious mental illnesses” orwho suffer serious impairments

as a result of their condition

Concerns were expressed abouthow this determination is beingmade by service providerswho are often working withoutadequate resources That is,service providers may not beable to fully assess an individualand may therefore make theirdecisions about who can accessservices based only on anindividual’s psychiatric diagnosis

Since women are more oftendiagnosed with affectiveresponses, personalityresponses and post-traumaticstress response — all of whichare considered “less serious” —

we heard concerns that theseBritish Columbian women willnot be able to access adequatesupports under new mentalhealth plan guidelines

Insensitivity/Inadequate Attention

to Physical Health Care Issues

A related issue is women’sphysical and mental healthconcerns not being takenseriously by their general

practitioners Women indicatedthat their physical complaintswere often dismissed as psycho-somatic or “all in their heads” or,conversely, concerns they hadabout their mental well-beingwere often trivialized or reduced

to their physiology as women

Transition House Mandates

A further barrier to access,but this time, access to women-serving organizations, occurredfor women who were experiencingviolence in their intimate

relationships and have mentalhealth challenges Concernsabout resident safety andappropriate staff training meansthat some transition houses arereluctant to house women withserious mental health problems

Very few transition houses inCanada are specifically designed

to support women who have beendiagnosed with mental illnesses

Transition house workersrecognized this limitation of theirservices and called for moretraining and support to housewomen with serious mentalhealth challenges An initiative

is currently underway in BritishColumbia which will bringwomen-serving organizationstogether with mental health

“It was NOT helpful

to be in a care facility

with men when I was

in crisis and was

trying to leave my

abusive husband.”

workers to learn how they canbetter support women withmental health challenges.

Other Barriers

Across the province and larly in rural areas there is adearth of mental health servicesthat are either designed toassist women from non-EuropeanCanadian backgrounds or

particu-provide generic services with

an awareness of the particularconcerns of diverse groups ofwomen

Many women noted that theydid not feel comfortable usingservices, such as drop-ins,clubhouses or supportedindependent living environments,all of which disproportionatelyserve men A woman in a ruralarea said, “It was NOT helpful

to be in a care facility with menwhen I was in crisis and wastrying to leave my abusivehusband.”

Finally, financial barriersprovided a significant deterrent

to women wanting to accessservices outside of the formalmental health system, includinglong-term counselling

Recommendations

· Recognize that mental healthproblems exist along a continuumand ensure that the currenttargeting of resources to the

“seriously mentally ill” does notresult in discrimination againstwomen If access to specifictypes of services (e.g., hospitals)are to be further restricted, morecommunity support options must

be made available to those whofall outside the mandate

· Broaden access and response

to a diverse range of women.Access issues for women forwhom English is not a firstlanguage or for whom othercultural barriers might exist arecomplex Anti-racism anddiversity training is needed formental health workers Thepromotion of alliances betweenmental health organizations andorganizations working withspecific populations is necessary

G Re-Victimization in the System

In some communities where thelocal hospital does not have apsychiatric unit or trained staff,jail cells are used to hold womenuntil they can be transported to

the nearest psychiatric hospital.

Women were often chemically

restrained through medication,

in such instances

Feminist writers have

docu-mented a wide range of abuses

in the system – ranging from

the ways in which women are

patronized by male medical

professionals to the ways in

which their claims are dismissed

(Ehrenreich & English, 1973;

Caplan, 1985) In addition,

feminists have written about

physical and sexual abuse by

professionals (Davidson, 1997;

Firsten & Wine, 1990; Penfold,

1998) Additionally, there has

been discussion about the

vio-lence committed against women

by male patients or visitors, due

to inadequate safety provisions

in institutions and on acute care

wards

Discussions about violence and

abuse within the mental health

system has also focused on

debates about the use of physical

and chemical restraints (Shimrat,

1997; Lyons, 1999) and the use

of electroconvulsive therapy

(ECT) Despite the many dangers

of ECT and no definitive evidence

that it alleviates psychiatric

symptoms, it continues to be

used as a treatment for severedepression and is most oftenused as a treatment on elderlywomen (Bohuslawsky, 1999)

Physical and chemical restraintsappear to be routinely used inacute mental health crises

Women also described instances

in which chemical constraints andelectroconvulsive therapy (ECT)were used in ways that they feltwere directly punitive of abehaviour a doctor did not like

All of the regions we visited, withone exception, have hospitalswith isolation rooms that werealso routinely used Although it isrecognized that these rooms areoften used to protect aggressiveand suicidal individuals, uniformly,women and service providersindicated that these rooms coulduse improvement Most are verybarren and have no toilet facilities

In one rural community we heard

of a woman who was held forthree days in a seclusion roombecause no beds were available

She had no access to a toiletexcept by escort and the toiletwas visible on a video monitor atthe front desk

The women and service providers

in our study were split in theirviews about the need for chemical

and physical restraints and forisolation rooms However, allagreed that the accompanyingindignities (e.g., being stripped

of one’s clothing, being handledroughly, etc.), were re-traumatiz-ing and felt that more humaneways were needed to help calmpeople in acute crisis The use ofrestraints, especially for womenwith histories of sexual violation

or abuse, can be further logically damaging (Smith, 1995)

psycho-Deaths and injuries through theuse of restraints have beendocumented (Weiss, 1998)

Several of our participantsrevealed they had been sexuallyabused by a professional Theconsequences of this abusewere substantial, often resulting

in further mental health problemsand a reluctance to seek help

Women in our study ized some of the ways inwhich they were prescribedmedications as abusive Inparticular, some women feltthat psychiatrists and generalpractitioners prescribedmedications without givingadequate information aboutimportant side effects orinteractional effects with otherdrugs (e.g., loss of sex drive,

character-lactation, no menses, sedation)and sometimes dangerous sideeffects (e.g., permanent

changes to the brain, tardivedyskinesia22) Others felt thatthey were being used as “guineapigs” to test new drugs on themarket

In smaller communities wherethere are no resident psychiatristsand individuals are dependent ontwice-monthly visits, medicationswere often monitored by generalpractitioners who did not havethe special training to ensure thatsymptoms, side effects andmedication dosages were appro-priately monitored

Recommendations

· Participatory treatment modelsshould be established whichwould allow psychiatrized women

to have advance input intotreatment planning should they

be unable to make decisionsduring an emergency crisis Forexample, women should be able

to have input as to what kinds oftreatment they would authorize in

isolation rooms and ECT straints, isolation rooms andECT should never be used aspunitive measures or for staffconvenience There are exampleswhere staff of institutions havereceived training to enable them

Re-to effectively work without theuse of restraints.23

· Institute a zero tolerance policyfor sexual abuse Sexual abuse

by medical and mental healthprofessionals is unacceptableand should be prosecuted Giventhat women with mental healthchallenges are more vulnerable

to abuse (in part, because theircredibility would be questionedshould they report), muchstronger measures are needed

to protect women and to enforceprofessional codes of ethics

The Task Force on the SexualAbuse of Patients, commissioned

by the College of Physiciansand Surgeons in Ontario in

1991, is an example of anattempt to monitor and addressthis problem

· Women must be advised ofthe risks of medications Mentalhealth professionals need toclearly advise their patients ofthe health-related risks ofpsychotropic medications24

and be able to provide informationabout how to safely come offmedications Wherever possible,complementary therapies andalternatives to medication should

be tried

Additionally, more research isneeded to determine the impact

of medications on women’snormal life cycles (menses,menopause, pregnancy) Forexample, research suggeststhat the peak hospital admissiontime for women with diagnoses

of schizophrenia is at childbirth(Women and Mental HealthWorking Group, 1996)

H Treatment of Choice

One woman who had beenusing alternatives to medicationfor several years and was feelingvery good noted, “I was notsupported in this by my generalpractitioner, but I am taking moreresponsibility for my own health

And this was seen as radical inhow you live your life! Recovery

is never seen as a possibility,just management.”

The mental health systempredominantly responds tomental health concerns throughthe prescription of psychotropic

Trauma and violence

in women’s lives can

medications Concerns aboutover-medication, especially ofelderly women (e.g., Oglov,1998), and of inadequate re-search into women’s responses

to psycho-tropic medicationshave been raised

Within the current system,despite a commitment to a

“bio-psycho-social” framework,the first response to women isprimarily one of clinical assess-ment and treatment throughpharmaceuticals There is muchevidence to suggest that there is

a rise in bio-medical treatmentmodels and that psychiatry isincreasingly being directed by thesupport of major drug companies

According to the IMS Health andInformation Company whichmeasures pharmaceutical indus-try sales, psychotherapeutic drugsales are booming and representthe second most common class

of drugs prescribed in Canada(IMS, 1999 cited in Fayerman,1999)

Consumers active in theanti-psychiatry movement(Shimrat, 1997; Capponi, 1992

& 1997; Blackbridge & Gilhooly,1985), some mental healthprofessionals (Cohen & Jacobs,1998;) and even psychiatrists

have questioned the nance of biological explanationsfor mental illness (Breggin,1991; 1994; 1996; Kaiser, 1996)

predomi-Within the current mental healthsystem psychiatrists are the mostwidely recognized experts andoften the only ones to whomwomen have free access Thissituation perpetuates a medicalresponse to mental illness andhas created a two-tiered system

in which women with moneyand resources can access amuch broader range of treatmentoptions than can women withlower incomes

Recommendations

· Ministers of Health in eachprovince must examine types ofmedical/health services that arecovered or subsidized throughmedical service plans and takesteps to include alternative andcomplementary therapies andcounselling

· Mental health providersmust facilitate women’s activeparticipation in treatment planning.Women must be supported intheir choice of treatment optionswhether this consists of

medication, alternative and/or

complementary therapies orthe use of traditional healingpractices.

I Trauma, Violence and Mental Health

One young Aboriginal womandescribed the abuse in her lifeand its consequences: “Suicide

is a big problem here We’re told

to keep silent, that we are babies

if we talk I lost my best friendand then finally got help I want to

be a grandparent, I want to seethat my daughter gets help

I reached out last week because

I didn’t want to commit suicide

I held on to that rope and thatsame day my cousin hung him-self I think of my mom She was

in an abusive relationship andstayed with him for years Shewas always told to stay there andstand beside him I was in anabusive relationship for sevenyears and my mom told me tostay, that it will get better

I am now the only parent to mykids I drank after an abusiveexperience and had an accidentand the father of my kids died I

am tired of all of it I want betterthings out of life.”

Trauma and violence in women’slives can be both a precursor

to psychiatric diagnoses, and acomplicating factor for womenalready experiencing mentalhealth difficulties

Numerous studies have foundthat sexual and physical abusehistories are common amongwomen and girls who have beendiagnosed with mental illnesses(Swett & Halpert, 1993; Fisher,1998; Alexander & Muenzenmaier,1998; Muenzenmaier, Meyer,Struening & Ferber, 1993; V/RHBWomen’s Health Planning Project,1999; CMHA, 1993) For instance,

a study of trauma histories amongwomen and men at British

Columbia’s provincial psychiatrichospital, Riverview, revealed thatlarge numbers of women havehistories of physical and sexualabuse: 58 per cent of women hadbeen sexually abused before theage of 17 (Fisher, 1998) TemiFirsten (1991) in her study ofwomen psychiatric inpatientsfound that 83 per cent hadexperiences of severe physical

or sexual abuse as children oradults What these studiessuggest is that symptoms oftrauma may be misdiagnosed asmental illnesses Further, thesestudies suggest that more investi-gation is needed to understand

the role of violence and trauma inthe etiology of mental illness.

Many of the women in our focusgroups disclosed that they hadhistories of having been physi-cally or sexually assaulted either

as children, as adults or both

For some women the abusewas ongoing at the time of thefocus group Evidence thatexperiences of violence wereoften what brought women intothe mental health system wasapparent Many of these womendescribed symptoms that areassociated with responses toabuse and with the copingmethods used to deal with abuse(e.g., depression, disassociation,anxiety or substance use)

Women reported that they wererarely asked about their experi-ences and rarely disclosedabuse in initial contacts withmental health professionals

Their symptoms were oftenpsychiatrically diagnosed andmedications were prescribed

One woman noted that when shevolunteered that she had beenabused, she was told by herpsychiatrist that it was all a baddream, even though she hadphysical injuries

Women who are experiencingmental health problems areoften more vulnerable to sexualand physical abuse For example,women in our focus groups indi-cated that histories of trauma andviolence made it difficult for them

to articulate personal boundarieswhen living in institutional set-tings

of support are required which donot employ intrusive or coercivemeasures (Whipp, 1992)

· Train anti-violence front-lineworkers to provide support towomen who have mental healthproblems and who are alsoexperiencing violence

· Provide support for long termcounselling and peer supportgroups for women with mentalhealth issues There is an

The main impetus for

that will ultimately

improve the quality of

life for women who

have serious mental

health challenges.