Taking care of chronic disease: realizing approaches for Canada's aging ethnic population: a workshop

Abstract

Taking care of chronic disease: realizing approaches for Canada's aging ethnic population was a
workshop held in Vancouver, British Columbia, Canada in February 2011. The purpose of this
workshop was to begin to address an existing evidence gap on approaches to self management
support that meet the needs of immigrant older adults with chronic conditions. This gap was
identified by participants in a multi-stakeholder forum and subsequent community
consultations with Mandarin- and Punjabi-speaking older adults organized by the Immigrant
Older Adults: Care, Accessibility, Research and Empowerment (ICARE) team.
In response, we conducted an environmental scan that resulted in an annotated bibliography.
From this exercise we concluded that:
(1) Literature on self-management supports for ethnocultural minority older adults is sparse
and varied; (2) Evaluations of U.K. and Australian programs revealed that they predominately
appeal to “white middle-class people with long-term conditions who already viewed
themselves as effective self-managers”; (3) Viable alternative models of self-management
supports for ethnocultural minority older adults are not reported in the literature; and (4)
Individual self-management needs to be situated within a collective understanding of
empowerment.
Our workshop aimed to facilitate the exchange of ideas between a group of 32 diverse
Canadian stakeholders (plus five student volunteers) such as immigrant older adults with
chronic conditions and their friends and family members, policy makers, clinicians, multicultural
settlement workers, and academics. Ultimately, we seek to develop evidence-based
approaches to self-management supports that acknowledge the various challenges faced by
this disadvantaged population and build on existing strengths within our communities.

Full text

i
Taking care of chronic disease:
realizing approaches for
Canada's aging ethnic
population: a workshop
Final Report
12
th
July, 2011
Sharon Koehn,
a
Pavlina Jarvis,
a
& Karen Kobayashi
b
(a) Centre for Healthy Aging at Providence Health Care
(b) Centre on Aging, University of Victoria

i
Funded with the generous support of our sponsors:
The Institute on Aging, Canadian Institutes of Health Research (CIHR - Meetings Planning and
Dissemination Grant (#90605)
The National Initiative for Care of the Elderly (NICE)
Centre for Healthy Aging at Providence Health Care
(support in kind)
Many thanks as well to our participants
Steering Committee
Sharon Koehn & Karen Kobayashi (co-chairs), Sue
Mills, Cynthia Andruske, Kelly McQuillen /Sherry Bar,
Elaine Chow, Charlotte Jones, Maylene Fong, Jay
Bains, Janet Kushner-Kow
Planning Committee
Jennifer Baumbusch, Pavlina Jarvis, Sharon Koehn

ii
Contents
Taking care of chronic disease: realizing approaches for Canada's aging ethnic population: a
workshop ~ Executive Summary ................................................................................................. iv
Background and Purpose of Workshop .................................................................................. iv
Terms of Reference ................................................................................................................. iv
The Workshop .......................................................................................................................... v
Conclusions ............................................................................................................................. vi
Taking care of chronic disease: realizing approaches for Canada's aging ethnic population: a
workshop ~ Final Report ............................................................................................................. 1
Background and Purpose of Workshop .................................................................................. 1
ICARE ....................................................................................................................................... 1
World Café I: Understanding the needs of immigrant older adults with chronic disease ... 4
World Café II: Meeting the need for chronic disease self-management supports by
immigrant older adults ........................................................................................................... 4
Terms of Reference ................................................................................................................. 6
Panel Presentations .............................................................................................................. 10
World Café Discussions ......................................................................................................... 13
Conclusions ........................................................................................................................... 37
References Cited ................................................................................................................... 39
Appendices .................................................................................................................................... 44
Appendix A: Workshop Participants ......................................................................................... 44
Appendix B - Panel presenters and workshop facilitator bios .................................................. 46
Facilitator and Panellists ....................................................................................................... 46
Table Facilitators ................................................................................................................... 47
Appendix C - Guiding questions: World Café tables ................................................................. 50
World Café I .............................................................................................................................. 50
World Café II ............................................................................................................................. 51
Appendix D - Presentation Panel Slides .................................................................................... 52
Appendix E – Dimensions of Access to Self-Management Supports ........................................ 53
Endnotes ................................................................................................................................... 58

iii

iv
Taking care of chronic disease: realizing approaches for Canada's aging
ethnic population: a workshop ~ Executive Summary
Background and Purpose of Workshop
Taking care of chronic disease: realizing approaches for Canada's aging ethnic population was a
workshop held in Vancouver, British Columbia, Canada in February 2011. The purpose of this
workshop was to begin to address an existing evidence gap on approaches to self management
support that meet the needs of immigrant older adults with chronic conditions. This gap was
identified by participants in a multi-stakeholder forum and subsequent community
consultations with Mandarin- and Punjabi-speaking older adults organized by the Immigrant
Older Adults: Care, Accessibility, Research and Empowerment (ICARE) team.
In response, we conducted an environmental scan that resulted in an annotated bibliography.
From this exercise we concluded that:
(1) Literature on self-management supports for ethnocultural minority older adults is sparse
and varied; (2) Evaluations of U.K. and Australian programs revealed that they predominately
appeal to “white middle-class people with long-term conditions who already viewed
themselves as effective self-managers”; (3) Viable alternative models of self-management
supports for ethnocultural minority older adults are not reported in the literature; and (4)
Individual self-management needs to be situated within a collective understanding of
empowerment.
Our workshop aimed to facilitate the exchange of ideas between a group of 32 diverse
Canadian stakeholders (plus five student volunteers) such as immigrant older adults with
chronic conditions and their friends and family members, policy makers, clinicians, multicultural
settlement workers, and academics. Ultimately, we seek to develop evidence-based
approaches to self-management supports that acknowledge the various challenges faced by
this disadvantaged population and build on existing strengths within our communities.
Terms of Reference
The Chronic Care Model is a widely adopted multi-pronged strategy aimed at preventing and
managing the increasing incidence of chronic disease worldwide. Central to the model is the
notion of the “informed activated patient” who interacts with a “prepared proactive practice
team.”This model has since been expanded to better account for the social determinants of
health, or factors that influence chronic conditions and their care that fall outside the purview
of the health system.

v
Self-Management Support encompasses health care, social services, and community-based
initiatives aimed at supporting individuals and their families to live well with chronic conditions.
This broad definition is well-suited to immigrant older adults, since it appears that much of the
care they seek for chronic conditions (together with their families), is found in the community
and multicultural sectors rather than the health care sector, per se. In parallel with the
expanded chronic care model, it also highlights the importance of considering the interface
between the health system and broader community supports and the ways in which both
influence the personal skills of the individual, delivery system design, decision support and
information systems. This report seeks to contribute to our understanding of what is needed in
terms of supports from the community and supports from the health system in order to enhance
the ability of immigrant older adults to self-manage their chronic conditions.
The Workshop
Following a presentation panel (see below for details), participants were engaged in discussions
that adopted the World Café model in order to address two main questions:
(1) To what extent do current self-management support models address the needs of
immigrant older adults? (And what are the barriers to their use by this population?)
(2) What are ‘promising practices’ for this population and what can we learn from them?
Each of a total of six discussion tables (three per one-hour time frame) were led by 2-3
participants pre-selected on the basis of their experience and knowledge of these various
domains as well as their representation of the different stakeholder groups.
a. Panel Presentations
Panellists were selected for their varied expertise and experience with chronic-disease self-
management supports. Their presentations represented policy, clinical and academic
perspectives:
(1) Chronic Disease Self-Management Supports for Ethnocultural Minority Older Adults by Kelly
McQuillen (Director, Patients as Partners, B.C. Ministry of Health);
(2) Self Management Support Approaches: A Key Solution to the Problem by Sue Mills (Ph.D.,
New Investigator, BC Centre of Excellence for Women’s Health);
(3) Ethno-cultural minorities and chronic disease: Clinician–patient interactions by Charlotte
Jones (MD, PhD, Associate Professor of Medicine, University of Calgary); and
(4) Self-Management Supports for Ethnocultural Minority Older Adults: What We Know and
What We Don’t Know by Karen Kobayashi (PhD, Associate Professor of Sociology, University
of Victoria).
b. World Café Discussions
Subsequent to the workshop, all of the notes taken for each World Café table were
transcribed, as were posters developed to summarize the contributions of the three sets of
“traveling” participants to each table. We wanted to let the collective wisdom of our

vi
participants speak for itself; however, we were also curious as to whether and how the
participants’ conversations reflected the strategic directions recommended by Mills et al.’s
(2011) framework for Chronic Condition Self Management Support.
Conclusions
There are numerous barriers and constraints preventing immigrant older adults from accessing
and fully benefiting from chronic disease self-management supports. These include constraints
at the systems, social, family and individual levels.
REACHing out to this relatively vulnerable subpopulation of older adults is therefore extremely
important. Raising awareness of chronic health issues, overcoming stigma and cultural beliefs
that regard chronic diseases as a normal part of aging and connecting individuals, families and
communities to services and programs were all seen as components of REACH. In order to
reach seniors, families need to be targeted. Immigrant older adults depend on their families,
specifically their adult children, to access and navigate the health care system.
The importance of BUILDING LINKAGES among health care providers and through community
partnerships was emphasized. For example, general practitioners need to “work with others,”
not in isolation. Service providers expressed the importance of “target[ing] health from a
community standpoint,” “ask[ing] the community what adaptations are needed”, “building
good community and increasing capacity”, and “building partnerships with community
infrastructure.” Participants also emphasized the limited capacity (time, infrastructure, funding,
training) of community partners to assume the full burden of providing self-management
supports for their clients; the health care system needs to change in order to facilitate their
increased involvement.
Also important is the provision of appropriate SUPPORTS TO HEALTH CARE PROVIDERS who
play an essential role in chronic disease self-management support. Changes are needed at the
systems level to facilitate an inclusive and culturally sensitive approach to self-management.
Workshop participants felt that building trust and a good relationship with GPs and other
health care providers is vital to the success of such programs. In addition to healthcare provider
education and training, health systems must provide incentives for health care providers to
spend more time with patients and address more than one problem at a time. Providers must
also be aware of available self-management supports for different communities to which they
can refer their patients.
Our multistakeholder dialogue underscores the importance of pursuing research that examines
what supports are needed for (a) community partners (including multicultural agencies, family
members, etc.) and (b) diverse health care providers to work collaboratively in order to ensure
that immigrant older adults have the skills they need to self-manage their chronic diseases. This
examination must take into account the interactive effects of social determinants of health on
both the prevalence and ways in which chronic diseases are experienced and the capacity of
individuals and communities to manage them. Research that distinguishes between different
types of support that are more salient at different points along the trajectory of a chronic

vii
disease is needed. Most critically, our research will continue to engage all stakeholder groups
so as to ensure its relevance and the uptake of any emergent recommendations.

1
Taking care of chronic disease: realizing approaches for Canada's aging
ethnic population: a workshop ~ Final Report
Background and Purpose of Workshop
Taking care of chronic disease: realizing approaches for
Canada's aging ethnic population was a workshop held in
Vancouver, British Columbia, Canada on February 11
th
, 2011.
1
The purpose of this workshop was to begin to address an
existing evidence gap on approaches to self management
support that meet the needs of immigrant older adults
2
with
chronic conditions. This gap was identified by participants in a
multi-stakeholder workshop (Spence, Koehn, & Kobayashi,
2009) and subsequent community consultations with Mandarin-
and Punjabi-speaking older adults organized by the Immigrant
Older Adults: Care, Accessibility, Research and Empowerment
(ICARE) team. In response, we conducted an environmental
scan that resulted in an annotated bibliography (Spence,
Nagatani, & Koehn, 2010). From this exercise we concluded
that:
1. Literature on self-management supports for ethnocultural
minority older adults is sparse and varied. Two evaluations
of the [Chronic Disease Self-Management Program, or]
CDSMP for older African-Americans indicate some
improvements in health behaviours and health status, slight
or no improvement in self-efficacy, and no change in health
service utilization (Gitlin et al., 2008; Rose et al., 2008).
2. Evaluations of U.K. and Australian programs, similar to the
CDSMP in that they are based on a model developed by
Lorig and her colleagues, revealed that they predominately
appeal to “white middle-class people with long-term
conditions who already viewed themselves as effective self-
managers”; males, indigenous people, people of non-English
speaking background and those with multiple
responsibilities were less likely to participate in these
courses (Rogers et al., 2008).
ICARE
The ICARE (Immigrant Older
Adults—Care Accessibility
Research Empowerment)
team was founded in 2009
with an infrastructure team
grant from the Women’s
Health Research Institute of
BC by co-PIs Dr. Sharon Koehn
(Centre for Healthy Aging at
Providence Health Care) and
Dr. Karen Kobayashi
(University of Victoria). With
this funding we developed
dense networks and consulted
with diverse stakeholders,
such as interdisciplinary
academics, clinicians,
multicultural settlement and
community service sector
staff, policy makers and older
adults.
Two research priorities and
working groups emerged from
this process: chronic disease self-
management supports and
community mental health. This
workshop is the result of the
successful application of the
‘chronic disease’ team for a
Meetings Planning and
Dissemination Grant (#90605)
from the Canadian Institutes of
Health Research
. Our work has

2
3. Viable alternative models of self-management supports for ethnocultural minority older
adults are not reported in the literature. The chronic disease self-management supports
literature specific to this population primarily examines the more informal self-care
practices of these populations. Available evidence indicates that a collaborative model of
self-management supports, specifically, a partnership between local community service
networks, primary care, and health authorities is most effective for marginalized groups.
Chronic care services should be embedded within existing community structures to ensure
ongoing participation and relevance (Dennis et al., 2008; Glazier, Bajcar, Kennie, & Willson,
2006; McDonald et al., 2004). Self-management supports models for ethnocultural minority
older adults must also consider barriers to health service access [e.g. health literacy] faced
by these populations (e.g., Baker et al., 2007; Kaufman et al., 2006; Kripalani et al., 2006;
Ntiri & Stewart, 2009). Cultural competency training within self-management supports
service delivery must extend beyond translation of program materials into an
understanding of the cultural context of the chronic disease experience (Huang, 2007;
Owens & Randhawa, 2004).
4. Individual self-management needs to be situated within a collective understanding of
empowerment (Aujoulat, Marcolongo, Bonadiman, & Deccache, 2008). Conventional self-
management supports models focus primarily on individual autonomy and personal
responsibility but neglect to address systemic barriers to access experienced by
marginalized communities. Instead of reinforcing the status quo, self-management supports
for ethnocultural minority older adults should build on family and community strengths and
bolster capacity to meaningfully engage in self-management (Sotomayor, Pawlik, &
Dominguez, 2007).
This review initially included literature published since 1990 from Canada and countries with
similar immigrant populations and/or health service delivery systems (principally the United
Kingdom and Australia). However, very few articles specific to self management supports for
immigrant older adults existed within these parameters. The review was thus expanded to
include data from the United States on African-American and Hispanic populations. The findings
reported above are therefore primarily based on research with these populations and may not
be as relevant to the distinct profile of ethnocultural minority older adults found in Canada and
British Columbia.
3
Accordingly, our workshop aimed to facilitate the exchange of ideas between diverse Canadian
stakeholders such as immigrant older adults with chronic conditions and their friends and
family members, policy makers, clinicians, multicultural settlement workers, and academics.
Here we record what we have learned from one another with the goal of laying the foundation
for future research collaboration. Ultimately, we seek to develop evidence-based approaches to
self-management supports that acknowledge the various challenges faced by this
disadvantaged population and build on existing strengths within our communities.

3
The thirty-two participants (plus five student volunteers) in the workshop were carefully
selected to represent each of the following stakeholder groups: immigrant older adults,
academics, clinicians (non-physician), physicians, government employees, health authority
employees, and multicultural settlement sector workers (see Appendix A). Most were from the
Lower Mainland of British Columbia (BC), Canada (including Vancouver, the North Shore,
Burnaby, Richmond, Coquitlam and Surrey), one traveled from Kamloops in the interior of BC,
four came from Vancouver Island, two from Calgary, Alberta, and one joined us from the
nearby U.S. city of Seattle.
4
Seniors and those working with a specific ethnocultural or
ethnolinguistic group represented the Punjabi, Chinese (Cantonese & Mandarin-speaking),
Iranian (Farsi-speaking) and Latin-American (Spanish-speaking) communities.
5
This workshop is
unique in bringing together this diverse combination of individuals to consult on chronic disease
self-management supports, in which they all have a vested interest. Upon registration,
participants were asked to rate their knowledge of the types of supports that immigrant older
adults need in order to self-manage their chronic diseases. Twenty-seven of the 32 registrants
responded to this question. The majority (16) felt that they understood the types of supports
needed “fairly well”, with the remainder responding as follows: “well” (7), “not very well” (3)
and “extremely well” (1). We suspect that this apparent lack of confidence relates to the
different types of knowledge that people possess as depicted in Figure 1, below.
Immigrants
Chronic disease
self-management
supports
Older adults
Figure 1: Different domains of knowledge
that contribute to an understanding of the issue
The inclusion of diverse stakeholders and their active engagement in the knowledge generation
process in this workshop sought to address this imbalance. Following a presentation panel
(detailed below), participants were engaged in discussions that adopted the World Café model
(The world café, 2010) in order to address two main questions:
Knowledge of all three domains (immigrants, older
adults, and chronic disease self management) and their
interactive effects is rare. Moreover, different types of
knowledge are typically not evaluated as equally
worthy, either by researchers or by those possessing
the knowledge. Anecdotally we know that self-
knowledge of one’s experience as an older immigrant
trying to self-manage a chronic disease (where all three
domains overlap) is greatly undervalued by older
immigrants themselves.

4
To what extent do current self-management support
models address the needs of immigrant older adults?
(And what are the barriers to their use by this
population?)
What are ‘promising practices’ for this population and
what can we learn from them?
Each of a total of six discussion tables (three per one-hour time
frame) were led by 2-3 participants pre-selected on the basis of
their experience and knowledge of these various domains as
well as their representation of the different stakeholder groups
(see Appendix B – Panelist and Table Facilitator Bios). All other
workshop participants rotated every 20 minutes between each
of the three concurrent groups. The role of the table hosts was
twofold: (a) to provide enough information on the assigned topic
to provide a foundation for participants to offer their views
and/or ask questions; and (2) to ensure that all participants
contribute at least once to the discussion. Each ‘team’ of hosts
was given a topic that related to their expertise. They were
asked to be prepared to speak for no more than five minutes of
the 20 allocated to each rotating group, and to provide us with
2-4 questions per team that would guide their efforts to elicit
the engagement of participants in that topic. The advisory team
reviewed these questions in order to ensure that they were (i)
aligned with the workshop goals and guiding questions; (ii) clear
and succinct; and (iii) that each table’s questions were relatively
distinct from the others’.
World Café I: Understanding
the needs of immigrant older
adults with chronic disease
(A) Understanding the influence
of socio-cultural factors (Dr. Sue
Mills and Dr. Karen Kobayashi)
(B) Community-based practice
and consultation (Ms. Laura Ng,
Ms. Elizabeth Stacy)
(C) The Chronic Disease-Self-
Management Program –Punjabi
(Dr. Patrick McGowan, Mr. Jay
Bains, Ms.Saroj Sood)
World Café II: Meeting the
need for chronic disease self-
management supports by
immigrant older adults
(A) The challenges of delivering
self-management supports at the
HA and primary care levels (Ms.
Maylene Fong, Dr. Shirley Sze)
(B) Health literacy and self-
management (Dr. Marina Niks;
Dr. Connie Coniglio)
(C) Gaps between evidence,
policy and practice (Ms. Carole
Gillam, Mr. Juan Solorzano)

5
The questions listed in Appendix C reflect our suggested amendments and were used by hosts
to guide their relatively open discussions with each group of approximately ten participants.
These discussions were recorded in detail by our volunteer note-takers and the hosts were
charged with the responsibility of preparing a poster at the end of the table sessions. This was
limited to one piece of flip chart paper, to which they had the option of affixing 1-2 pieces of
letter size paper with bullet points of the content of their 5-minute presentation on the topic.
The goal of the poster was to capture approximately three key themes that arose out of their
discussions with each of the three groups. These succinct syntheses were subsequently
delivered to all participants in presentations of no more than five minutes per team. Given
these parameters, hosts were remarkably successful at staying within their time limits to deliver
strong messages that clearly captured the discussions and held the attention of all present.
The World Café model was adopted as one of several strategies to ensure that all relevant
stakeholder voices were heard within and beyond the workshop. Based on extensive
discussions among members of the advisory team and the World Café table hosts, we also
decided to group participants relative to the their connection to the subject matter as follows:
Relationship to CDSMS
6
& immigrant older
adults
Stakeholder types grouped together
Conceptual/planning Academics; government and health authority
decision-makers
Experiential (as members of immigrant
communities)
Older adults; multicultural sector service
providers
Health services delivery Health authority employees; physicians
In so doing we hoped to maximize the likelihood of each person’s participation due in part to
similarities in communication styles (e.g., professional vocabularies, framing of the issues) and
lived experiences. We also anticipated that perceptions of power imbalances among them that
serve to silence the least powerful would be reduced. In the ensuing full group discussion we
hoped to encourage a greater cross-fertilization of ideas among the different groups of
stakeholders. Interestingly, however, only those individuals who self-identified and were
viewed by others as leaders chose (or felt qualified) to speak in this arena. By contrast,
participants were reluctant to end their lively discussions in which all were actively engaged at
the World Café tables, underscoring the appropriateness of this format for this diverse group of
stakeholders.

6
Terms of Reference
Chronic Disease Self-Management Supports
The Chronic Care Model is a widely adopted multi-pronged strategy aimed at preventing and
managing the increasing incidence of chronic disease worldwide. Central to the model is the
notion of the “informed activated patient” who interacts with a “prepared proactive practice
team” (Wagner, Austin, & Von Korff, 1996; Wagner et al., 1999). This model has since been
expanded to better account for the social determinants of health, or factors that influence
chronic conditions and their care that fall outside the purview of the health system, as reflected
in the diagram below (Barr et al., 2003).
Figure 2: The expanded chronic care model (Barr et al., 2003).
There are many definitions of Chronic Disease Self-Management and Self-Management
Support that reflect the context within which they were developed and the purpose for which
they were created. The chronic condition self-management support framework and community
of practice project team, led by Dr. Sue Mills, had this to say:

7
[I]ndividuals and their families self-manage chronic conditions in the context of
their daily lives which often include interactions with a wide range of services.
From this perspective, [Self-Management Support] encompasses health care,
social services, and community-based initiatives aimed at supporting individuals
and their families to live well with chronic conditions (Mills, Brady, Sargious,
Ziabakhsh, & Jayanthan, Forthcoming 2011).
This broad definition of self-management supports is well-suited to immigrant older adults,
since it appears that much of the care they seek for chronic conditions (together with their
families), is found in the community and multicultural sectors rather than the health care
sector, per se. In parallel with the expanded chronic care model, it also highlights the
importance of considering the interface between the health system and broader community
supports and the ways in which both influence the personal skills of the individual, delivery
system design, decision support and information systems. This report seeks to contribute to
our understanding of what is needed in terms of supports from the community and supports
from the health system in order optimize the ability of immigrant older adults to self-manage
their chronic conditions.
It is therefore important to specify how these two core concepts—self-management and self-
management support—are defined within the domain of health, on the one hand, and
community on the other. Here we draw on the definitions used by B.C.’s Ministry of Health to
understand how they are conceptualized within the health care context:
 Chronic Disease Self-Management refers to the tasks that individuals must undertake
to live well with one or more chronic conditions. These tasks include having the
confidence to deal with medical management, role management and emotional
management of their conditions.
 Self-management support is understood as the systematic provision of education and
supportive interventions by health care staff to increase patients’ skills and confidence
in managing their health problems, including regular assessment of progress and
problems, goal setting, and problem-solving support.
7
Reporting on the projects of the Diabetes Initiative of the Robert Wood Johnson Foundation,
®
Fisher et al. (2007. p. 221S) suggest that “self management can be viewed in broad contexts of
(1) communities, structures, and organizations that provide the base for (2) the resources and
supports that are available to people and (3) the self-management behaviors that result.” This
expansion of Wagner’s chronic care model thus recognizes “the built environment, community
organizations, worksites, informal social networks, and families” (2007, p. 222S), as well as
health care organizations, as relevant to individuals’ daily self-management experiences.
Expansion of our understanding of these contributing factors is essential if we are to
successfully support self-management efforts.

8
A review of research in this area by Sanders and Rogers (2008, p.16) identified the many ways
in which social networks and support influence how people with chronic conditions “are
supported inside and outside of formal health service provision”:
“[S]upport (or lack of it) from existing networks [plays a role] in adapting to
chronic illness” (Sanders & Rogers, 2008, p.17). Also important is the
maintenance of ‘‘valued social roles, coherent identities and a ‘normal life’’’
(Townsend, Wyke, & Hunt, 2006, p. 185). Social support also impacts “recovery
from chronic illness episodes (e.g. see review by Kaplan & Toshima, 1990). For
some individuals and groups, aspects of social support are not easily separated
out from individual self management. . . . [T]he structure and content of social
networks may [also] impact on who gains access to, and engages in, self-
management programs. There is evidence that such programs may be operating
an ‘inverse care’ law (Hart, 1971), with recruitment skewed in favor of those who
are more affluent and see themselves as good self managers; whilst those who
could benefit the most are least likely to engage with such programs
(Kennedy,Rogers, & Gately, 200[6])” (Sanders & Rogers, 2008, p.17).
These various interpretations of chronic disease self management and self management
support are reflected throughout the literature, in practice and in everyday reference to the
topic by the lay public. It is therefore important to specify what we mean when we use these
terms, in order to be clear about the types of supports needed and the relationship among
them. Future research questions must be precise in this regard. However, this precision is not
possible in the context of lively discussion among diverse stakeholders. Participants in our
forum would often not distinguish between the nature of self management versus the barriers
to acknowledging a need to self-manage, for example. Similarly, they did not always articulate
whether they were referring to formal or informal self-management supports. This ambiguity is
therefore apparent in our reporting of the World Cafe discussions.
Immigrant older adults
Older adults are the most rapidly expanding population in Canada, expected to grow from
13.7% today to almost 24% by the year 2031 (BC Ministry of Health Services, 2004). Equally
dramatic has been the increase of ethnocultural older adults, who now comprise more than
one quarter of Canadians 65 years and over (Statistics Canada, 2006). A report just released on
the findings of the 2008 Canadian Survey of Experiences with Primary Health Care (Health
Council of Canada, 2010) found that 72% of Canadians aged 65+ reports having at least one of
seven selected chronic conditions. Moreover, while people in this age group are most likely to
have multiple chronic health conditions, they are least likely to receive some kind of self-
management support.

9
Recent immigrants who move to Canada after age 65 have poorer overall health compared to
their Canadian-born counterparts (Gee, Kobayashi, & Prus, 2004), and chronic disease
morbidity is elevated in certain minority populations. For example, foreign-born populations
from South Asia experience higher rates of diabetes mellitus and heart disease (Fikree & Pasha,
2004; Gupta, Singh, & Verma, 2006; Raymond et al., 2009); yet knowledge of these diseases
and their management is relatively low among these populations (Ford, Mai, Manson, Rukin, &
Dunne, 2000; Grunau, Ratner, Galdas, & Hossain, 2009). Older immigrants are variously
challenged in their efforts to access health care relative to the intersecting effects of their
charter language abilities, socioeconomic status, gender, immigration category and status,
place of residence and so on. Oppressions experienced throughout the life course influence
their social capital which may be further diminished in the face of role reversal and loss of
status, as well as discrimination experienced post-migration (Guruge, Kanthasamy, & Santos,
2008; Koehn & Kobayashi, 2011; Koehn, 2009; Koehn, Spencer, & Hwang, 2010; Sadavoy,
Meier, & Ong, 2004).

10
Panel Presentations
Panellists were selected for their varied expertise and experience with chronic-disease self-
management supports. Their presentations represent policy, clinical and academic
perspectives. Brief overviews follow, but readers are directed to Appendix B for information on
the panellists and Appendix D for the presentation slides.
Chronic Disease Self-Management Supports for Ethnocultural Minority Older Adults
Kelly McQuillen (Director, Patients as Partners, B.C. Ministry of Health)
Objectives:
 To provide a high-level overview of Patients as Partners
 To focus on Patients as Partners’ framework for with supporting chronic disease self-
management at the provincial level
 To describe current community self-management programs in BC
 To introduce the BC logic model and Provincial self-management support evaluation
Outline:
 Introduce Primary Health Care Charter, Triple Aim, Family Centred Care and the Three
Charters (re: individual, system, community)
 The expanded chronic care model; BC definitions of self-management and self-
management support
 Descriptions of the BC Chronic Disease Self-Management Program (CDSMP)–Punjabi
version (McGowan); Health Care Professionals Delivering Self-Management Support
program
 Population-based chronic conditions management, Self-Management Support Steps of
Expertise for BC, logic model (and associated activities) developed by Impact BC,
provincial workgroup to evaluate self-management education and support efforts
Self Management Support Approaches: A Key Solution to the Problem
Sue Mills (Ph.D., New Investigator, BC Centre of Excellence for Women’s Health)
Objectives:
 To explore how social determinants of health (including social and physical
environments) as well as more micro factors, such as personality, knowledge, skills etc.,
influence individuals’ and their families’ capacity to manage chronic disease.
 To identify how these factors influence people’s ability to access and participate in self-
management support interventions, particularly more disadvantaged groups who
experience greater social inequalities.

11
 To illustrate how the delivery, design and content of many self-management support
interventions fail to account for these important factors and some encouraging
directions that are attempting to address these limitations.
Outline:
 Statistics: Not all members of society are equal in regards to developing chronic
conditions (prevalence in different sectors of the population), nor are they equal in how
they do once they are diagnosed (health outcomes, comorbidities). These inequalities
lead to inequities.
 Factors that make the difference: social determinants of health.
 Research evidence outlining examples of ways in which the social determinants of
health influence how people manage their chronic conditions.
 Current dominant approaches to self-management interventions and research evidence
on how social determinants of health-related factors are influencing how particular
subgroups are accessing and using SM interventions.
 Relevance of content of self-management interventions to complex social contexts and
limitations of current approaches in considering social determinants of health
 Promising directions forward.
Ethno-cultural minorities and chronic disease: Clinician–patient interactions
Charlotte Jones (MD, PhD, Associate Professor of Medicine, University of Calgary)
Objectives:
 Outline major known determinants of health.
 Review literature on clinician-patient interactions.
 Review published studies and knowledge outlining interventions to optimize clinician-
patient interactions.
Outline:
 Institute of Medicine report: Unequal Treatment.
 Quality of the clinical encounter - patient and physician roles: physician uncertainty;
quality of patient-physician relationship; patient mistrust and refusal; patient reactions
to clinician’s beliefs and attitudes.

12
 What helps? Symmetry of beliefs (patient:physician); physician education re: existence
of stereotyping and bias; performance feedback; public awareness of inequity; research
on access and utilization disparities; evidence-based resource allocation; address
barriers to access (e.g. language, etc.); improve continuity within systems; community-
based and multi-disciplinary approaches to treatment; community capacity building;
community liaisons.
 Legal/policy/regulatory guidelines that support health care provider-patient
relationships: equality of public and private systems; case load limits, time flexibility,
multidisciplinary teams, representative hiring practices.
Self-Management Supports for Ethnocultural Minority Older Adults: What We Know and What
We Don’t Know
Karen Kobayashi (PhD, Associate Professor of Sociology, University of Victoria)
Objectives:
 To provide an overview of Self-Management Support for Ethnocultural Minority Older
Adults: An Annotated Bibliography.
 To assess the quality and limitations of studies available on this topic.
Outline:
 Self-management support for marginalized or disadvantaged populations, older
populations and ethnocultural minority groups.
 Self-management support for immigrant older adults: CDSMP adaptations for immigrant
older adults; alternative self-management programs (to CDSMP) for immigrant older
adults; Cultural competency in self-management support; CDSM, coping, and lifestyle
practices among immigrant older adults.
 Health literacy and self-management supports.
 Complementary and Alternative Medicine: self-management support, older adults,
ethnocultural minorities, immigrant older adults.
 Capacity-building/community development: self-management support, older adults,
ethnocultural minorities, immigrant older adults.
 Conclusions – where we need to go from here?

13
World Café Discussions
Subsequent to the workshop, all of the notes taken for each World Café table were transcribed,
as were the posters developed to summarize the contributions of the three sets of “traveling”
participants to each table. These were then imported into the data management program,
Atlas.ti 5.0 ®. Both inductive and deductive coding strategies were employed simultaneously.
We wanted to let the collective wisdom of our participants speak for itself; however, we were
also curious as to whether and how the participants’ conversations reflected the strategic
directions recommended by Mills et al.’s (Forthcoming 2011) framework for Chronic Condition
Self Management Support. This draft framework is the outcome of an international roundtable
of policy and academic experts on self management supports for chronic conditions convened
in Vancouver by Dr. Mills in June, 2009. The Framework, currently under development,
identifies eight guiding principles and seven strategic directions aimed at “fostering a culture
that creates structures, enacts policies, and offers services to reduce the impact of chronic
conditions and support people’s self-management behaviours” (p. 6).
Codes for each of the following strategic directions were applied to the transcribed text in
addition to the inductive codes that emerged from the data. Each framework code coincided
with a unique cluster of inductive codes as follows:
Framework code and definition # of
quotations*
Co-occurring inductive codes**
FW – ENGAGEMENT: “support people
with chronic conditions and their families
to be meaningfully engaged in decision
making, planning and evaluation of self-
management support initiatives.”
7 Capacity building {5}
Education {20}
Health literacy {20}
FW- ACCESS, REACH, RANGE: “expand
reach and range of, and access to self-
management support interventions,
programs, and services in healthcare
systems and communities. Relates to
identifying and reducing barriers,
educating providers and program leaders
(cultural competency training, etc.).”
41 Constraints {44}
Cultural competency building {6}
CULTURAL CONTEXT {31}
Education {20}
FW - LINKS {18}
Health literacy {20}
Language barrier {12}
Level - Family {13}
Level - Individual {5}
Level - Systems {31}
Social Isolation {3}
Social media {9}
Staff {7}
Working with community {16}

14
FW - EVIDENCE building: "advance
evidence on the effectiveness and
appropriateness of self-management
support interventions and other kinds of
self-management support-related
initiatives”
12 Education {20}
Level - Systems {31}
Resources {12}
Working with community {16}
FW - QUALITY improvement: "improve
quality of self-management support
services, programs and interventions"
11 FW - QUALITY improvement {11}
Constraints {44}
CULTURAL CONTEXT {31}
Doctor/Patient Relationship {5}
Health literacy {20}
Level - Systems {31}
Resources {12}
FW – LINKS: “ forge and strengthen
linkages within and between sectors,
policies, programs, and service providers"
18 Education {20}
FW- ACCESS,REACH,RANGE {41}
Level - Systems {31}
Social media {9}
Staff {7}
FW – LEADERSHIP: “foster leadership,
commitment and accountability for self-
management support at all levels of
health care and social and community
services."
3 Education {20}
Working with community {16}
FW - INFRASTRUCTURE building: “build
infrastructure to support self-
management support initiatives and
provide resources and funding to support
these initiatives."
4 Level - Systems {31}
Table 1: Associations between CCSMS Framework and inductive codes for World Café
discussions
*The term ‘Quotations’ in Atlas.ti refers to segments of text to which a specified code is assigned and may encompass a single word up to the
entire document. The program enables the generation of reports by code while still identifying the source document which, in this case, refers
to all materials associated with each of the World Café tables.
**{#} refers to the number of quotations for this code

15
While Mills et al.’s framework has yet to be finalized, our findings support the distinctions it
makes between each of the seven strategic directions. The clusters of inductive codes
associated with each are relatively unique. Our data provide examples of actions for each
and/or illustrate their different dimensions. Using the framework as a lens through which to
organize our inductive categories facilitates their translation into action and provides direction
as to gaps in understanding and evidence.
It is evident from Table 1 that the key strategic direction needed is “to expand the reach and
range of, and access to SMS interventions, programs, and services in healthcare systems and
communities.” This in turn overlaps with the importance of forging and strengthening “linkages
within and between sectors, policies, programs, and service providers." This framework does
not incorporate all of our inductive codes, however.
8
We also feel that the complex notion of
access warrants some clarification.
The seven dimensions of access to self-management supports depicted in Figure 3 were
originally identified relative to access to health care for vulnerable populations by means of a
critical interpretive synthesis of the literature on that topic (Dixon-Woods et al. 2005, 2006).
Koehn (2009) has subsequently applied the framework to primary data on immigrant older
adults and found that it fully and systematically accounted for the phenomenon of access and
the way in which vulnerabilities arise in relation to it. Here we have adapted the framework to
the broader scope of self-management supports that extend beyond the health care system to
include formal social care supports as well as the support received through less formal
networks and mechanisms. Each dimension of access was evident in our data from the World
Cafe table discussions and is elaborated below. Visual depictions of most dimensions can also
be found in Appendix E.
Sorting data into these seven dimensions was easily accomplished because distinct groups of
our inductive codes could be readily associated with each of the seven categories.

32
Figure 3: Dimensions of access to self-management supports
Accessing self management supports
S el f-/family
identificationof
need
Navigation:
identifying
supports, getting
there
Patient’s
presentati onof
thei r claim for
support
Provider’ s
assessment of
that claim
Patient’s
acceptance
/ rejection of
support offer
Ease of access
to support
(fl exibili ty,
location, time…)
Local conditions
aff ecting acces s
(polici es ,
reputati on…)

33
Seven dimensions of access to self-management supports
Self-/family-identification of need to self-manage
The first step in gaining access to self-management supports is determining that you need to
self-manage and deserve to be supported in your efforts to do so. Our participants described
four barriers to the identification of the need for self-management of chronic disease by the
immigrant older adults under discussion.
First, the increasing dependence of the elderly was noted by several participants. As with all
older adults, dependence in some aspects of life may increase with declining health and
increasing frailty. For immigrant seniors, however, migration to an alien sociocultural and
linguistic environment in late-life can add to this dependency. Cultural factors also come in to
play. Men are often thought to be better equipped than women to make decisions for family
members. More commonly we heard that seniors viewed their adult children as their ‘safety
net’ in later life and relied upon them to determine if and how they should seek care.
Immigration policies that render sponsored parents and grandparents dependent for their first
ten years in Canada and limit the services to which they have access also reinforce this
dependency. One participant also noted that adult children may intercede with care providers
to protect elderly parents from a fatal diagnosis. We should note, however, that our own
research shows that considerable variation exists within cultures and it is unwise to generalize
such beliefs to an entire population, since cultures are known to transform over space and time
(Koehn, Neysmith, & Kobayashi, under review). Finally, there is research and even legislation
that examines the increasing inability of immigrant families to provide for the needs of their
ailing elderly parents.
There was considerable discussion about the normalization by many older immigrants of the
pain and suffering they experience in old age. This took several forms. Without knowledge of
healthy aging and specific chronic diseases, the two were thought to be inevitably intertwined
and therefore nothing could be done about it. Some felt that the suffering they experienced
was their “fate” (e.g., Karma, or ‘health is governed by the Sun’). Another interpretation was
that tolerating suffering was a virtue. A related theme is the unwillingness to acknowledge a
chronic condition because of the stigma associated with illness and death in some cultures.
The fact that many older immigrants have very limited financial resources is reflected in the
unwillingness of some to spend money on treatment when they’re ‘just going to die anyway’.
Comments like this also relate to the considerable loss of self-esteem that many immigrant
older adults endure when they are sponsored by their adult children. With no or little income
and few opportunities to engage in paid work, many experience role reversals with the younger
generation and a considerable demotion in status. Without an understanding of the difference
in diagnoses, older immigrants sometimes share unwanted medications with others who
cannot afford them.

34
Finally, our participants told us that older immigrants often will not initiate a search for care for
their chronic conditions, seek out ways to self-manage them, or look for support with this task,
because this type of care is not available in the countries from which they have arrived. Nor do
they have the language skills or access to information to be able to find out about services in
Canada, particularly if they are new to the country. Increasingly this type of information is being
channelled through social media such as Facebook and Twitter, to which many older
immigrants do not have access.
Navigation
Once the decision to seek care is made, people must invest a great deal of effort and resources
to find their way to and through the health and social-care systems. The ability to do so
depends, to a great extent, on their access to informal supports, such as family members who
most often provide transportation, translation and interpretation services.
Participants mentioned both individual and systemic barriers, both of which are acknowledged
by the concept of ‘health literacy’ referring to “The ability to access, understand, evaluate and
communicate information as a way to promote, maintain and improve health in a variety of
settings across the life-course” (Rootman & Gordon-El-Bihbety, 2008). Older persons in general
tend to have lower health literacy. Some older immigrants are further handicapped in this
regard by their lack of charter language skills, recency of immigration, and low/no literacy in
their own language (more often true of older women). Without these skills it is harder for older
immigrants to gain knowledge of the benefits of self management and the health and social
care systems as well as written materials that can support these efforts. Accessing
transportation is also very difficult with limited language and literacy skills. Other barriers, such
as limited mobility, little or no income, and limited time or motivation (e.g., due to childcare
responsibilities or the nature of the chronic condition itself) further isolate immigrant older
adults from the care and supports they need.
As a result, their adult children are required to take on the role of interpreters and cultural
brokers for their aging parents. It is therefore beneficial to target information on self-
management supports at this younger generation as well. There are numerous ethical concerns
with conveying sensitive information to an older adult via a younger family member (who may
be an abuser, who may not be able to convey gender-specific information, who may not be
confident in their interpretation skills and fear they have not conveyed the necessary
information accurately, etc.). The role of liaison, transportation provider and interpreter for
older parents is also stressful in terms of the competing demands on their time as parents, as
employees, etc. As a result, not all adult children can assume this responsibility and not all older
immigrants have children in Canada. Others are therefore needed to assist and advocate for
older immigrants. Examples are volunteer drivers from within the community and ‘culture
brokers’ who can liaise between the older adult and the health and social care systems.

35
Efforts to make the health care system more responsive to those with low health literacy
include translation of key documents into different languages, and guarantees that both
original and translated documents are written in ‘plain language.’ Other media that do not rely
on literacy are also essential to convey important information. Considerable emphasis in health
literacy discussions was placed on the doctor-patient relationship, to be addressed below. For
example, some family physicians ask their patients how they would like to receive information
about their chronic conditions. More extensive efforts to address organizational issues so as to
ensure continuity of care throughout our very complex health care systems are also necessary,
as is investment in interpreter services and locally accessible self-management supports.
Presentation of a claim for self-management support or –provider-patient interactions
For both immigrants and older people in general, the process of presenting well in order to
demonstrate the authenticity and legitimacy of a claim to support is complex. Language and
cultural incongruence between the health-care recipient and provider, already discussed,
clearly limits the ability of the recipient to make a credible claim. Most importantly, this takes
more time. Older patients in general are known to need more time with physicians, as are those
with multiple chronic conditions for whom management is complex. Our participants
repeatedly raised concerns about the current funding model for family physicians which instead
encourage physicians to stipulate that they can only treat one illness per fifteen-minute visit.
One participant noted that new incentives for physicians to spend more time with patients with
multiple chronic conditions are forthcoming. More widespread changes of this nature are
needed in order for physicians and/or other health care providers to spend the time they need
with older immigrant patients to ensure that they have developed sufficient rapport and an
appropriate style of communication (possibly with the assistance of an interpreter) to fully
understand the patients perspectives on health and healing and to determine what they need
in order to successfully manage their chronic condition(s).
Non-profit community organizations can play a role in improving supports by informing family
doctors in their neighbourhoods of the services they provide. Physicians and other health care
providers in turn need to take the time to become acquainted with these language and culture-
appropriate supports in order to be able to provide immigrant patients, particularly older
adults, with concrete referrals to additional supports. Several of our participants nonetheless
warned that the community sector cannot be expected to assume full responsibility for
translation/interpretation and chronic disease self-management supports without the
resources to train and pay committed staff (as opposed to much more transient volunteers)
who can work responsibly with them.
A few participants also expressed concerns about the judgements that some health care
providers make about their older immigrant patients based on ageist or culturalist/racist
assumptions that influence their decisions to refer them to appropriate treatment or supports.
Health care providers therefore need training in patient communication techniques and the
self-examination of their own biases.

36
Acceptance/rejection of offer of support
Offers of support may be rejected by those in need for many reasons. These include differences
in the perception of their utility between care provider and recipient, cultural taboos or stigma,
the fact that the supports recommended are not feasible, due—for example—to competing
demands on time, such as the need to provide care for a grandchild or spouse, among others.
These issues emerge throughout the World Café table discussions and have been identified in
previous sections.
Participants also pointed to two types of incongruence that may result in the rejection of
chronic disease self management supports offered by health care providers. The first speaks to
a lack of representation of consumer or client populations among health authority staff.
Correcting this imbalance has been complicated in the past by restrictions on advertising for job
candidates of specific ethno-linguistic backgrounds. Even when ethno-linguistic minorities are
hired, gender distributions and other sub-cultural or religious distinctions made within a
particular cultural group must be heeded in order to match patients with care providers. And
this type of matching is typically only feasible for larger cultural groups with a sufficient pool of
trained health care providers to draw from.
A second type of incongruence that may result in a patient’s rejection of support is that
between the medical model of disease—the framework within which most self-management
supports are offered—and cultural models of health and illness held by older immigrants that
may be less individualistically focused or more holistic in nature. As previously noted,
community organizations are well-equipped to assume this role, but will require additional
resources if they are to be effective. The assurance of quality should be maintained by
establishing measures of trustworthiness for community agencies providing such supports.
Community leaders should be recruited and trained to lead educational workshops, but undue
reliance on volunteers is not recommended.
Systemic issues– suitable options
Dixon-Woods et al. (2005) use the metaphor of a membrane through which people must find
their way in order to gain access to the services or supports that they need. Services that have
low “permeability” (e.g., require referrals, have limited access hours etc.) require the
mobilisation of many resources (such as language skills, transportation, health literacy,
knowledge of the system, time, etc.) of which older immigrants are typically in short supply.
Many of these issues have been addressed in the previous sections. Strategies to increase the
‘permeability’ of the system suggested by our participants are as follows (and see Appendix E):
 Culture brokers / interpreters on medical teams
 Culturally congruent SMS models and staff
 Training of HC providers: National Cultural Competence website
 Group medical visit - peers with condition, family members, more time

37
 Culturally appropriate coaching
 Focus on health literacy of care provision context
 Flexible funding of supports - non-'health' (community) services
Local conditions affecting access
Local conditions that influence the production of candidacy range from geographic proximity to
services to provincial policies, the effects of which can be profound. Our participants strongly
emphasized the importance of working closely with local and ethnocultural communities
(including immigrant societies) and building community capacity in order to increase
community awareness and develop affordable, effective and sustainable supports. Involving the
community maximizes enrolment; they know where to find people and how to motivate them
to participate. Communities are also more effective than researchers at lobbying government.
MPs and MLAs should be invited to community events to share good and bad experiences,
successes and struggles alike.
Conclusions
Of the three dominant themes that emerged from our World Cafe discussions, “Reach” is most
fully developed. This primary theme is also a strategic direction that is identified in the
framework document, “Building bridges: An international framework for promoting self-
management support in the care of chronic conditions” (Mills et al., 2011), as follows:
Expand reach and range of, and access to self-management support interventions,
programs, and services in healthcare systems and communities. Relates to
identifying and reducing barriers, educating providers and program leaders (cultural
competency training, etc.).
This strategic direction can only be attained if we attend to the key points raised under our two
other most dominant themes, “Building Linkages” and “Health Care Provider Supports.”
There are numerous barriers and constraints preventing immigrant older adults from accessing
and fully benefiting from chronic disease self-management supports. These include constraints
at the systems, social, family and individual levels. REACHing out to this relatively vulnerable
subpopulation of older adults is therefore extremely important. This theme was reiterated in all
groups. Service providers emphasized the need to target hard-to-reach patients. These are
seniors who are not seeking help for a variety of reasons. For example, they may be isolated
and have difficulties in accessing programs due to transportation issues, language and health
literacy barriers or may accept chronic disease and suffering as a normal part of aging.
Raising awareness of chronic health issues, overcoming stigma and cultural beliefs that regard
chronic diseases as a normal part of aging and connecting individuals, families and communities
to services and programs were all seen as components of REACH.

38
In order to reach seniors, families need to be targeted. The important role of families was
brought up repeatedly across all groups. Immigrant older adults depend on their families,
specifically their adult children, to access and navigate the health care system.
Service providers discussed strategies in reaching out to them. Their suggestions included using
social media, such as radio and TV; utilizing currently established programs and services;
holding meetings at places where people traditionally gather; working together with
community leaders (persons of influence who are well respected in the community); training
and working with peer volunteers.
The importance of BUILDING LINKAGES among health care providers and through community
partnerships was emphasized in all groups. For example, general practitioners (GPs) need to
“work with others,” not in isolation. Service providers expressed the importance of “target[ing]
health from a community standpoint,” “ask[ing] the community what adaptations are needed”,
“building good community and increasing capacity”, and “building partnerships with
community infrastructure (temples, etc.).” Participants also emphasized the limited capacity
(time, infrastructure, funding, training) of community partners to assume the full burden of
providing chronic disease self-management supports for their clients; the health care system
needs to change in order to facilitate their increased involvement. True partnerships need to be
built with appropriate resources, where “NGO’s, community organizations and volunteers”
work together with the healthcare system and patients. As the projects of the Diabetes
Initiative of the Robert Wood Johnson Foundation
®
have demonstrated, “working together
extends the range, variety, and coordination of services and supports available” (Fisher et al.,
2007, p. 220S).
Also important is the provision of appropriate SUPPORTS TO HEALTH CARE PROVIDERS who
play an essential role in chronic disease self-management support. Changes are needed at the
systems level to facilitate an inclusive and culturally sensitive approach to chronic disease self-
management. Workshop participants felt that building trust and a good relationship with GPs
and other health care providers is vital to the success of chronic disease self-management. This
can be facilitated if there are incentives for health care providers to spend more time with
patients and address more than one problem at a time.
There was a strong emphasis on working with health care providers to raise their awareness of
available chronic disease self-management supports for different communities to which they
can refer their patients. Healthcare provider education and training (cultural competence) were
viewed as essential to the enhancement of chronic disease self-management supports for
immigrant older adults. Suggestions included volunteers to coach healthcare workers on how to
interact with patients from other cultures; using “cultural brokers”; incorporating cultural
competency training as a health policy for staff; and hiring and retaining staff from different
cultures.

39
Our multistakeholder dialogue thus underscores the importance of pursuing research that
examines what supports are needed for (a) community partners (including multicultural
agencies, family members, etc.) and (b) diverse health care providers to work collaboratively in
order to ensure that immigrant older adults have the personal skills they need to self-manage
their chronic diseases as per the Expanded Chronic Care Model. This examination must take
into account the interactive effects of social determinants of health on both the prevalence and
ways in which chronic diseases are experienced and the capacity of individuals and
communities to manage them.
Sanders and Rogers (2008) point the way to useful critical (realist and constructionist)
theoretical and methodological approaches to this work. Especially valuable is research that
distinguishes between different types of support that are more salient at different points along
the trajectory of a chronic disease. These and other distinctions “are likely to assist with
mapping the nature of support mechanisms and range of resources linked to everyday ways of
living with chronic conditions within specific residential areas” (2008, p.28) Qualitative
methods are especially useful “for examining aspects of relationships and community
structures that are often hard to measure” (2008, p. 32) but mixed method approaches are
optimal if we choose to focus on the relationship between social networks and health
inequalities. Most critically, our research will continue to engage all stakeholder groups
included in this forum so as to ensure its relevance and uptake of any emergent
recommendations.
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Appendices
Appendix A: Workshop Participants
Facilitators (F), Table Facilitators (TF), Presenters (P)
Jay Bains (TF)
South Asian Program Coordinator, Chronic Disease Self Management
Program
Centre on Aging, University of Victoria
& Activity Director, Guru Nanak Niwas AL,
Progressive Intercultural Community Services, Surrey
jaybains@eastlink.ca
Sherry Bar
Patients as Partners
Primary Health Care, BC Ministry of Health Services
Sherry.Bar@gov.bc.ca
Jennifer Baumbusch
Assistant Professor
School of Nursing, University of British Columbia
Jennifer.Baumbusch@nursing.ubc.ca
Elaine Chow
Neurologist (Taiwan); Instructor of Western Internal Medicine
PCU College of Holistic Medicine, Burnaby
elainechow@shaw.ca
Connie Coniglio (TF)
BCMHA Health Literacy Network chair,
BC Mental Health and Addictions, Provincial Health Services Authority
cconiglio@bcmhs.bc.ca
Maylene Fong (TF)
Clinical Practice Leader-Chronic Disease Prevention and Management
Vancouver Coastal Health
Maylene.Fong@vch.ca
Angeles Frost
Senior, Latin American community
Fariba Ghodousi
Cultural Interpreter (Farsi-speaking)
Vancouver Coastal Health (North Shore)
Fariba.Ghodousi@vch.ca
Carole Gillam (TF)
Executive Director, Primary Health Care
Vancouver Coastal Health
Carole.Gillam@vch.ca
Clemencia Gomez
Executive Director
South Granville Seniors Centre
cgomez@southgranvilleseniors.ca
Maggie Ip
Senior & community volunteer
S.U.C.C.E.S.S.; Chinese community
maggiewuip@gmail.com
Pavlina Jarvis
Project Coordinator
ICARE-Chronic Disease SMS team
Centre for Healthy Aging at Providence
pjarvis@providencehealth.bc.ca
Alula Jimenez-Torres
Program Manager
NAPCA Healthy Aging Program
Seattle, WA, USA
alula@napca.org
Charlotte Jones (P)
Associate Professor & Medical Director
Division of Endocrinology and Metabolism
Departments of Medicine and Community Health Sciences,
University of Calgary
jones@ucalgary.ca
Karen Kobayashi (P, TF)
Associate Professor & Research Affiliate
Department of Sociology/Centre on Aging,
University of Victoria
& NICE Aging & Ethnicity theme team co-lead
kmkobay@uvic.ca
Sharon Koehn (F)
Research Associate & Clinical Assistant Professor
Centre for Healthy Aging at Providence Health Care
& Faculty of Medicine, University of British Columbia
skoehn@providencehealth.bc.ca
Janet Kushner Kow
Geriatrician & Clinical Assistant Professor
Vancouver Coastal Health/Providence Health Care
& Faculty of Medicine, University of British Columbia
JKow@providencehealth.bc.ca
Daniel Lai
Professor
School of Social Work, University of Calgary
& NICE Aging & Ethnicity theme team co-lead
dlai@ucalgary.ca
Marissa Mantle
Student Volunteer
Nursing, UBC
mantles@shaw.ca
Patrick McGowan (TF)
Associate Professor & Research Affiliate
Centre on Aging, Chronic Disease Self-Management Program
University of Victoria
mcgowan@dccnet.com

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Facilitators (F), Table Facilitators (TF), Presenters (P)
Kelly McQuillen (P)
Director, Patients as Partners
Primary Health Care, BC Ministry of Health Services
Kelly.McQuillen@gov.bc.ca
Sue Mills (P, TF)
New Investigator
BC Centre of Excellence for Women's Health
smills@cw.bc.ca
Amir Moztar-Zadeh
Student Volunteer
Gerontology, SFU
ama32@sfu.ca
Laura Ng (TF)
Diabetes Educator
Chronic Disease Prevention & Management,
Vancouver Coastal Health
Laura.Ng@vch.ca
Marina Niks (TF)
BC Health Literacy Roundtable
Douglas College
niksm@douglas.bc.ca
Jennifer Quan
Student Volunteer
Faculty of Medicine, UBC
jyquan@gmail.com
Dora Replanski
Community Health Researcher
Multicultural Health Committee,
Affiliation of Multicultural Societies and Service Agencies of BC
amssahealth@amssa.org
Cheryl Rivard
Patients as Partners coordinator
Vancouver Coastal Health
Cheryl.Rivard@vch.ca
Marina Rometsch
Student Volunteer
mnr8826@hotmail.com
Mohinder Sidhu
Senior & community volunteer, Punjabi community
South Vancouver Neighbourhood House
mohrrr@gmail.com
Juan Solorzano (TF)
Chronic Disease Services Leader
Vancouver Coastal Health (North Shore)
Juan.Solorzano@vch.ca
Saroj Sood (TF)
Senior, chronic disease self-management peer leader, Punjabi
community
Guru Nanak Niwas Assisted Living
Progressive Intercultural Community Services, Surrey
sarojsood1@hotmail.com
Elizabeth Stacy (TF)
Research Coordinator
iCON Chinese Online Health Network, eHealth Strategy Office
Faculty of Medicine, University of British Columbia
elizabeth.s@ubc.ca
Shirley Sze (TF)
Physician Lead for the Practice Support Program
Interior Health
wmsze@telus.net
Wyatt Wang
Mandarin seniors group facilitator
SUCCESS – Richmond
wyatt.wang@success.bc.ca
Brandon Wong
Manager, Business Development
HealthLink BC,
BC Ministry of Health Services
Brandon.Wong@gov.bc.ca
Andrew Wong
Student Volunteer
Faculty of Medicine, UBC
arwong@interchange.ubc.ca

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Appendix B - Panel presenters and workshop facilitator bios
Facilitator and Panellists
Sharon Koehn, PhD, is a Research Associate at the Centre for Healthy Aging at Providence
Health Care. She is the co-lead of the Immigrant Older Adults: Care, Accessibility, Research and
Empowerment (ICARE) team. Trained as a medical anthropologist, she has been conducting
interdisciplinary community-based research with immigrant older adults since 1990.
Kelly McQuillen is the Director of Patients as Partners, Integrated Primary and Community Care,
with the BC Ministry of Health Services. She is committed to patient-and family-centered care
as an innovative approach to the care, redesign and quality improvement. Her current position
enables and facilitates patient and family voice, choice and representation in the care, quality
improvement and system redesign of integrated primary and community care in BC.
Sue Mills, PhD. does research looking at how women in disadvantaged groups self-manage their
chronic conditions and how current self-management related policies and interventions reflect
those experiences. She is also developing an international framework for how we should move
forward in self-management research, policy and practice.
Charlotte Jones, PhD, is currently an associate professor of medicine at the University of
Calgary. She practices as an adult Endocrinologist and is medical director of the Calgary Zone
Alberta Health services Hypertension and Cholesterol Center. She has been involved in
developing and implementing the CHAMP (Cardiovascular health, awareness and management
program) programs. These programs have been implemented in numerous communities across
Alberta. Her CHAMP programs in the Indo-Asian community are in the process of being
disseminated across Canada.
Karen M. Kobayashi, PhD, is an Associate Professor in the Department of Sociology and a
Research Affiliate at the Centre on Aging at the University of Victoria. On the research front,
she co-leads the ICARE team with Sharon Koehn and the Ethnicity and Aging theme team for
the National Initiative for the Care of the Elderly (NICE) with Daniel Lai.

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Table Facilitators
World Cafe I:
(A) Sue Mills, Karen Kobayashi (see above, presenters)
(B) Laura Ng, Elizabeth Stacy
(C) Patrick McGowan, Jay Bains, Saroj Sood
Laura Ng is a Diabetes educator. She teaches and administers the Vancouver Chinese Diabetes
Education Centre. Laura has experience working with Chinese diabetes clients and clients with
diverse ethnic backgrounds in home health settings. She is involved in chronic disease
prevention work.
Elizabeth Stacy is a research coordinator at the eHealth Strategy Office where she focuses on
community-based projects working with multicultural and First Nations communities in the
province. She has worked on the intercultural Online Health Network (iCON) supporting
communities across BC in developing skills and confidence in chronic disease self-management
through culturally relevant and language appropriate in-person events and online resources.
Patrick McGowan directs the University of Victoria Centre on Aging, Ladner office. Patrick
implements self-management programs throughout the province and trains health care
professionals in self-management support strategies.
Jay Bains is a CDSMP trained and certified Master Trainer, affiliated with University of Victoria,
Centre on Aging as South-Asian Program Coordinator.
Saroj Sood came to Canada in 1980 as an experienced social worker from India. Since her
retirement in 1992 she has been actively involved with the Indo-Canadian Seniors Centre and
other projects in her community. Most recently, Saroj was trained as a Chronic Disease Self-
Management Program Leader for Punjabi-speaking seniors. She moved to an Assisted Living
facility designed to accommodate Indo-Canadian seniors in 2007.

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World Cafe II:
(A) Maylene Fong, Shirley Sze
(B) Marina Niks, Connie Coniglio
(C) Carole Gillam, Juan Solorzano
Maylene Fong manages the Healthy Living Program in Vancouver Community. This is a health
promotion/chronic disease prevention program for the high risk population. She is also the
clinical practice lead (Clinical Nurse Specialist) for the Adult Older Adult home care program in
home health. Maylene provides clinical lead in all areas of community practice with a focus on
chronic disease.
Shirley Sze has been a Family Physician in Kamloops for 30 years. Presently, she is working at
Vascular Improvement Program and Palliative Care Team. Shirley is the Physician Lead for the
Practice Support Program for Interior Health Program, involved in teaching and developing the
Self Management and Mental Health Modules. She is also a Faculty member for the Health
Literacy Collaborative 2009.
Marina Niks works in the field of Health Literacy developing and implementing collaborative
interventions and community based research projects. She has been involved in convening two
Roundtables to articulate a provincial Health Literacy Strategy and is part of the BC Health
Literacy Network.
Connie Coniglio is the Director of Health Literacy at BC Mental Health and Addiction Services
(BCMHAS), an agency of the Provincial Health Services Authority. Connie is responsible for the
direction and management of health literacy initiatives under the BCMHAS provincial mandate.
Ongoing initiatives in Connie’s portfolio include the Kelty Resource Centre, the Multicultural
Translation Project, and the BC Partners for Mental Health and Addictions Information.
Carole Gillam is the Executive Director Primary Care Vancouver Coastal. She participates with
Ministry of Health and General Practice Services Committee in policy development. Carole is
currently conducting Doctoral research into the professional relationship between patient-as-
partners in self-management and nurses’ understanding of chronic disease management.

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Juan Solorzano is the Team Leader, Chronic Disease Services Leader for Vancouver Coastal
Health, and has led the design and development of a comprehensive chronic disease strategy
for the North Shore. His duties include strategic planning of health care services, stakeholder
consultation, community outreach, partnership building, physician engagement and program
design & evaluation. Juan also supervises a number of the ambulatory clinics in the Medical
Day Centre at West Community Health Centre and Lions Gate Hospital that includes nurses,
dieticians, exercise specialist, social workers and clerical staff.

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Appendix C - Guiding questions: World Café tables
World Café I
Understanding the influence of socio-cultural factors
(Dr. Sue Mills and Dr. Karen Kobayashi)
 Do social support factors, i.e., quantity and quality of relationships with family and
friends, influence the ways in which EMOA self-manage their chronic conditions? If so,
in what ways?
 Do cultural factors, i.e., more “traditional” norms, values and beliefs about health and
illness, influence the ways in which EMOA self-manage their chronic conditions? If so, in
what ways?
 Do social factors, i.e., gender, SES, geographic place of residence, influence the ways in
which EMOA self-manage their chronic conditions? If so, in what ways?
 How might we consider these factors (1-3) in the development and/or revision of
approaches to self-management interventions (or self-management support initiatives
more broadly)?
Community-based practice and consultation
(Ms. Laura Ng, Ms. Elizabeth Stacy)
 Given what you know about what’s out there in terms of CDM/SMS supports, what
practical information and tools do people need?
 What might health professionals/ government/ immigrant service workers, patients…
need to know?
 What do you have to say that people need to hear? (“…I have ideas but don’t know who
to tell.”)
 What are some creative ways to involve immigrant communities in CDM/SMS
programming and the system.
 What types of outreach would help immigrant older adults in different communities?
Could technological solutions be used? If so, how?
The Chronic Disease-Self-Management Program – Punjabi
(Dr. Patrick McGowan, Mr. Jay Bains, Ms. Saroj Sood)
 What are challenges and barriers that may make it difficult for Punjabi seniors to
participate in group self-management programs?
 What factors facilitate community sustainability of self-management?

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 What can self-management leaders and volunteers do to benefit the larger community?
World Café II
The challenges of delivering self-management supports at the HA and
primary care levels
(Ms. Maylene Fong, Dr. Shirley Sze)
 Time - how to go about setting aside dedicated time to create self-management goals
and effective follow-up? Are time requirements for EMOA different versus other older
adults?
 What types of preparation and toolkits would one require to deliver SM supports at the
HA and primary care levels?
 How can the HA and primary care providers raise the awareness for SM support within
their organizations for EMOA first and then amongst the EMOA community? Are they
doing a good job at present?
 How best to link EMOA to SM supports in the community and how do we create SM
supports at the HA and primary care level that will respond to the particular needs of
the EMOA?
Health literacy and self-management
(Dr. Marina Niks; Dr. Connie Coniglio)
 In your experience, how does Health Literacy impact the ability of EMOAs to self
manage their chronic diseases?
 What role do NGOs, community organizations and/or volunteers play in supporting
EMOAs self-management of chronic diseases? Is it working? How? What difference does
it make?
 What challenges do you see in NGOs, community organizations and/or volunteers
supporting EMOAs’ self-management of chronic diseases? What is needed to facilitate
the appropriate use of the sector?
Gaps between evidence, policy and practice
(Ms. Carol Gillam, Mr. Juan Solorzano)
 Some research suggests that seniors from ethno-cultural minorities may require
different approaches in self-management support. In your opinion, what are the key
pieces of evidence that suggest that current policies and practices need to be revised?

52
 With your understanding of existing policies, identify the main discrepancies between
new evidence and current policy/practice.
 What are some of the main challenges you anticipate in making the necessary
policy/practice changes, and how would you address them?
 List the top three recommendations you would give to a decision maker able to
influence policy and practice in this area?
________________________________________________________________________
Appendix D - Presentation Panel Slides
Attached as a separate document

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Appendix E – Dimensions of Access to Self-Management Supports

54

55

56

57

58
Endnotes
1
We gratefully acknowledge our funders for this workshop: The Institute on Aging, Canadian Institutes of Health
Research (CIHR – Meetings Planning and Dissemination Grant #90605), and the National Initiative for Care of the
Elderly (NICE). Support in kind was also received from the Centre for Healthy Aging at Providence Health Care
(CHAP) and the Department of Gerontology at Simon Fraser University.
2
Our focus for the ICARE team and this workshop was on first generation immigrant older adults. However, we
refer at times to a broader group of ethnocultural minority older adults, a term which encompasses both new
immigrants as well as those who have lived all or most of their lives in Canada or the United States. This expanded
inclusion criterion is necessitated by the limited research on either group. Moreover, we believe that while there is
much to differentiate them, some lessons can be learned from ethnocultural minorities who by virtue of their
outward physical appearance have been racialized, as are many new immigrant older adults.
3
The two largest groups of immigrants to Canada since 1991 are of Chinese and South Asian origins. These two
populations also lay claim to the highest proportions of immigrant older adults (Turcotte & Schellenberg, 2007).
Similarly in BC, almost equal proportions of older immigrants to BC from 2005 to 2009 arrived from Mainland
China and India, together comprising 55% of all older immigrants to the province during that period (WelcomeBC,
2010). More than half of all senior arrivals to BC reported no charter language ability. This is especially true of
those who arrive under the Family Class (i.e., parents and grandparents sponsored by children/grandchildren). In
BC, these sponsored older immigrants constitute the majority of recent seniors’ arrivals at more than 86%
between 2005 and 2009 (WelcomeBC, 2010) and most of these are from India and China (BC Stats, 2006).
4
The focus of her organization (NAPCA) is on immigrants from Asian Pacific countries, particularly the Philippines
and Vietnam, as well as Chinese-speaking and South Asian countries. This individual is charged with developing
chronic disease management supports for older adults form these populations. International exchange is therefore
feasible and potentially fruitful.
5
This does not include the many academics, physicians and others in the group who were also from diverse
backgrounds, but do not work exclusively with one group.
6
CDSMS is a commonly used acronym for Chronic Disease Self-Management Supports. A variant is CCSMS, for
Chronic Condition Self-Management Supports.
7
Health care context definitions are courtesy of Kelly McQuillen, Patients as Partner, BC Ministry of Health
Services.
8
Inductive codes that do not overlap with the framework were Beliefs around SM {13}; Level - Social Networks {8};
Navigating systems {5}; Peer Leaders {3}; Quality of life {2}; Transportation {3}