The Schizophrenia Society of Canada and its provincial partners revised its mission to focus on “improving the quality of life for people affected by schizophrenia and psychosis.” In May 2008, the SSC commissioned a Canada-wide survey to learn how it can support people living with schizophrenia and their families to recover the best quality of life possible. Through a qualitative and qualitative survey and cross Canada focus groups, 1,086 people shared what QOL means to them.

1. Project Background
In 2007 the Schizophrenia Society of Canada (SSC)
revised its mission “to improving the quality of life (QOL)
for those affected by schizophrenia and psychosis”. A
survey was undertaken in 2008 to broaden the meaning of
quality of life from a lived perspective.
Purpose of survey:
Allow consumers and families to self-define QOL.
• Adds depth to new mission.
• Identifies consumer / family priorities & QOL elements.
• Informs SSC education, programming & advocacy.
• Strengthens SSC legitimacy to speak for members.
• Inform work of Mental Health Commission of Canada.
QOL measure limitations
• Bio-psycho-social perspective of medicine.
• QOL tools do not address concept of recovery.
• Used to assess treatment & service outcomes.
• Focus on clinical outcomes and adverse effects.
• QOL tools reflect ‘researcher defined’ measured.
• Recognized as ‘subjective experience’.
• QOL of family caregivers largely ignored.
Survey Process
• Survey design included SSC & provincial leadership.
• Reflected QOL & recovery concepts from the literature.
• Confidential on-line & hardcopy survey.
• Survey in French & English.
• Distributed - SSC networks & stakeholder groups.
• Qualitative and quantitative questions.
• Focus groups in three regions.
Who participated? Total 1,086
SURVEY PROFILE
• 6 separate facilitated, semi-structured groups.
• 433 Consumers & 570 family members.
• 72% consumers were male.
• 80% of family members were female (46% - mothers).
• Average age consumers - 37 yrs.
• Average age family 56 years.
• 53% consumers live independently,
• 27% live with family, 15 live in supported housing.
• 100% English consumers dx schizophrenia vs. 83%
French consumers.
• Average hospitalizations = 5 times.
• Length of of illness = average 19 years
Focus Group
• 81 participants (39 consumers & 42 family)
• Participant profile similar to surveys.
• St. Johns, NFL, Montreal Quebec & Calgary, Alberta
Acknowledgments
This project was funded by the SCHIZOPHRENIA
SOCIETY OF CANADA FOUNDATION. Many thanks to
Chris Summerville, Florence Budden, Pamela Forsythe,
Judith McKenzie & Ryan Clarke for their support along with
the provincial societies and consumer groups.
Messages for health professionals
• Foster hope & promote recovery practices.
• Support self-defined QOL goals.
• Medications are important. But so is QOL.
• Include people as partners in planning & shared
decision-making.
• Listen, respect & learn. See ‘people’ first.
• Consider the body, mind and spirit in your focus.
• Look at people within their family & community.
• Provide practical help (income, housing, work…)
• Encourage peer-to-peer support.
• Include family/caregivers in treatment planning.
• Support & educate families to improve coping.
• Deal with stigma & discrimination - your own &
others.
Neasa Martin: Researcher, Co-investigators: Chris Summerville & Florence Budden,
Sponsored by Schizophrenia Society of Canada
Direction to SSC
Promote hope & recovery as key messages.
Develop recovery oriented educational resources.
Address stigma & discrimination - promote rights.
Promote family as important partners in care.
Align advocacy efforts to maximize QOL:
• Employment is a priority.
• Support friends, family and community support.
• Advocate for system reform aligned with QOL.
• Advocate for safe, affordable housing.
QUALITY OF LIFE
As defined by people living with schizophrenia and their families…
TOP QOL MEASURES
Being seen as capable - 96%
Acceptance by family - 96%
Belief in recovery - 96%
Peace & contentment - 94%
Support & information – 94%
Feeling safe in community – 93%
Involvement of friends – 92%
Medications - 90%
Hope & Optimism -90%
Sense of belonging – 90%
Social & recreational activities – 90%
Positive relations with professionals – 89%
Support of family – 87%
“The illness is not you – it is just a part of you.”
“My life is just like anyone else’s. We all need help
in different areas.”
EMERGING THEMES
Hope, optimism & belief in recovery
Consumers believe recover is possible.
They need others to share this hope and be optimistic.
Families want to believe - but loose faith in the face of illness.
Friendship & family support is critical
Both say that friends fade away & family is not always
supportive.
Social exclusion is felt as a deep and painful loss.
The loss of friends, family and work breaks bonds to
community. Leads to self-stigma.
Support of peers is critical to recovery.
By default families meet most needs.
Strong desire for purpose & meaning
People WANT to work.
Work gives financial security, social support.
Not enough focus is paid to work issues.
Disability pensions are a barrier to employment.
Medications & professional support
91% take medications - very important to their QOL.
People are ambivalent - side effects QOL.
Too much focus placed on medications.
Control of illness is not the same as QOL.
Professional don’t listen - families agree.
Multiple supports needed for independence.
Access to treatment services essential.
Employment services &/ or financial support.
Community based services.
Many supports not available or are misaligned.
Family is being left out
Majority want family involved - not being asked.
Families feel left out, ignored & criticized.
Major source of stress -  QOL for both.
Families have unique info. & support needs.
Balanced lifestyle brings contentment
People create meaningful lives - despite their illness.
Finding meaning by helping others supports their recovery.
Balance includes meaningful work, leisure, friends, exercise,
joy, learning, community, spirituality…
Families need to find balance too
Constant worry, lack of balance, fear of illness, and reduced
supports negatively affects their mental health.
Consumers want their family to focus more on their own
needs.
Stigma & discrimination is real
People want to be treated equally - they’re are NOT!
Basic rights are denied within health care.
They feel harshly judged, excluded, feared by family, police,
employers, media, professionals and neighbours.
Schizophrenia Society of Canada
4 Fort Street, Winnipeg, MB R3C1C4
Tel: 1-204-786-1616
Toll Free: 1-800-263-5545
www.schizophrenia.ca
Consumers What Limits QOL Caregivers
69%
Symptoms of illness
90%
63%
Unemployment
76%
62%
Insufficient Income
84%
62%
Side effects of medications
84%
59%
Feelings of depression
86%
55%
Loneliness & Isolation
91%
48%
Lack of purpose & meaning
87%
46%
Hopelessness for the future
88%
41%
Poor physical health
72%
35%
Inadequate housing
74%
23%
Alcohol & Drug use
73%
22%
Police Involvement
65%
For further information