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Chronic Disease
Self-Management
Supports for Ethnocultural
Minority Older Adults
Kelly Mc Quillen, Director
Patients as Partners, BC Ministry
of Health Services
Patients as Partners improveshealth care in three ways
Population
Health
Experience
of Care
Per Capita
Cost
The Triple Aim, www.ihi.org
Healthy
People!
Happy
People!
And we can
afford it!
Patients as Partners – BC definition
Patients and families are partners in primary health care when they are supported and encouraged to :
�participate in their own health care
�participate in decision making about that care
�participate at the level they choose
�participate in quality improvement and health care
redesign in ongoing and sustainable ways
Core principles of family-centered care
• Dignity and Respect
• Information Sharing
• Participation
• Collaboration
Institute for Family-centered Care
http://www.familycenteredcare.org/
Patients as Partners
Improvement Charters
2008-2011
Individual
Health
Care
Shaping the
Primary Health
Care System
Bringing in
the Community
The Expanded Chronic Care Model
• We want “Informed Activated Patients” and “Prepared, Proactive Practice Teams”
• The mechanism to achieve this is through:
1. Community self-management programs
2. Health care professionals using self-
management support strategies
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.
The US Institute of Medicine 2004
Information
• From the program
• From other participants
Practical Skills
• Getting started skills (e.g., exercise)
• Problem-solving skills
• Communication skills
• Working with health care professionals
• Dealing with anger/fear/frustration
What do people learn in SM programs?
More Practical Skills • Dealing with depression• Dealing with fatigue
• Dealing with shortness of breath• Evaluating treatment options
Cognitive Techniques• Self-talk• Relaxation techniques
What people learn, cont.
Community Self-Management
Programs in BCChronic Disease Self-Management Program
Punjabi /Chinese Chronic Disease Self-Management Programs
Chronic Pain Self-Management Program
Diabetes Self-Management Program
Active Choices Program
Arthritis Self-Management Program
Matter of Balance Program
Youth Self-Management Pilot
Bounce Back , CMHA
BC Health Links , Dial-a-Dietitian
UBC InterCultural On-Line Network
Impact BC, Peer Support Network
Punjabi Chronic Disease Self-
Management Program Dissemination
2009-10 Pilot in South Surrey
2010-11 Implemented in Nanaimo, Richmond,
Vancouver, Victoria, Abbotsford, Mission, Burnaby,
Port Alberni, Williams Lake, Kamloops, Prince George,Penticton, Surrey
Culturally
Congruent Care
Health
Literacy
Self-management Support
Foundations of Self-management
support
� 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
The US Institute of Medicine 2004
Health Care Professionals
Delivering Self-Management
Support
The Flinders Model
5 Minute Empowerment
Stages of Change
Motivational Interviewing
The 5 A’s Approach
SMS Strategies
� Establish Rapport
� Setting the Agenda
� Health Risk Appraisals
� Readiness For Change
� Ask - Tell - Ask
� Closing the Loop
� Making Action Plans
� Problem-Solving Process
� Follow-up
Segmenting the
population with chronic
conditions into distinctive
sub-populations with
different care needs and
objectives, so that
effective, proactive,
planned & tailored
interventions can be
implemented to improve
care & reduce costs
What Is Population-Based
Chronic Conditions Management??
Self Care Support
Assisted Care or
Care Management
Intensive Case Management
Prevention is part
of every
member’s care
Level 1
Level 2
Level 3
Pre
vention
DRAFT Self-management Support
Steps of Expertise for BC
Ex: dialectical behavioural therapy
Addictions treatment
Intensive interpersonal therapy
Meets needs of majority
of population
Basic SMS Skills
Goal Setting
Action Planning
Problem Solving
Follow-up
Advanced SMS Techniques
Examples: Motivational Interviewing
Group Interactions
Problem Solving Treatment
Expert Skills & Techniques
Meets needs in special situations
Meets needs in complicated
situations
Evidence-based Care Management (ie Guided
Care Nursing)
Based on work of the Indian Health Service Self-management support Group: Connie Davis, Tricia
Trinite, Ann Lewis, Pat Lundgren, Neil Baker, Judith Schaefer, Tracy Jacobs
Matching SMS training to need of population
Meets majority or
patient needs
Meets special needs
of subpopulations of patients
Meets complex
needs of patients
Who? Trained peers and anyone working in a health care setting
Trained peers (CDSMP) and professionals
Professionals
Training Inservices, workshops
Specific courses and training programs
Specific courses and training programs
Availability Community
Primary care
Community
Primary care
Community programs,
Mental health and
addictions programs
SMS Logic Model
• Developed by provincial workgroup
• Follows the three priorities of individual,
system and community
• Delineates inputs, activities, outputs, short
term, intermediate, and long term
outcomes
• Document available at www.impactbc.ca
Activities in the Patients as Partners Self-Management Support Logic Model
SMS/SME Measurement
• Provincial workgroup
• Work currently under review
• Goals are to:
– understand the results of the investment in self-management education and self-management support throughout the province
– Create a standardized measurement set for provincial SMS/SME efforts
Make a wish!
If you had a magic wand and could make changes in chronic disease self-
management services to meet the needs of ethnocultural minority older adults , what would you wish for?
1
CDSM and Equity: Does CDSM work for
disadvantaged groups?
Sue Mills Ph.D. New Investigator
Clinical Assistant Professor, UBC [email protected]
2
Outline
• SM interventions and disadvantaged groups
• Major challenges in advancing our understanding?
• Promising ways forward?
3 > 13 million Canadians report chronic conditions
4
Self-management support approaches:
A key solution to the problem
5
Assumption:
Dominant SM interventions/programs can work for everyone with CC
6
• Evidence suggests this is not an accurate assumption
• Increasing concern that SM programs might ↑ health inequities in some groups of people with CCs (Foster et al., 2003; Michie et al., 2009; Newbould et al., 2006)
7
Some groups:
• More difficulties managing CCs
• Worse health outcomes
• Increased disability & chronic pain
8
What causes the differences? Differences in the social determinants of
health
Social inequalities
e.g., Poverty, lack of education, unemployment, discrimination, social exclusion
“Unequal Chances in Life”
9
Social Structure
Social Environment
SM Behaviours
Pathophysiological changes
organ impairment
Work
Material Factors
Psychological
Well-Being Morbidity Mortality Culture
Genes
Early Life
Brain Neuroendocrine and immune
response
Brunner, Eric and Marmot, Michael. (2000). Social organization, stress, and health. In Social Determinants of Health. Ed(s). M. Marmot and R. G. Wilkinson. Oxford, UK: Oxford University Press, pp. 17-43.
Social Determinants of Health
10
SM interventions & disadvantaged groups
Explore evidence around key questions:
• Are SM programs effective for disadvantaged groups?
• Do disadvantaged people access and participate in SM programs?
• Is the content of the SM programs appropriate and relevant to the lives of disadvantaged people?
11 White, middle class women’s needs have been best served by dominant SM approaches
12
Effectiveness of SM programs for disadvantaged groups?
• Mixed evidence (Bury & Pink, 2005; Boldy & Silfo, 2006) Disadvantaged groups may be less likely to benefit but some studies show positive self-reported outcomes
• Some reviews have identified factors that contribute to the success of the programs (McDonald et al., 2006)
• Mostly studied in relation to ethnic minority groups rather than other forms of disadvantage (Brown et al., 2002; Connell et al., 2008; Khunti et al., 2008)
• Mostly on SM interventions for diabetes and heart disease (Glazier et al., 2006; Eakin et al., 2002)
13
Access & Participation
• “SMPs do not attract or retain large segments of the populations, particularly the young, elderly, those living in poverty, those living in rural/remote settings, and Aboriginal people” (Paterson et al., 2009, p. 2)
• Low update, low attendance, high attrition rates (Griffiths et al., 2005; Rose et al., 2008)
14
Summary of Issues Influencing access to CCSM interventions for disadvantaged
groups
McDonald et al., 2004, Action on Inequalities, HIRC PHC Network, p.51
15
Relevance of content Dominant assumptions that don’t always align with the disadvantaged lives (Mills, S, 2011)
• CAPACITY and DESIRE to become an ACTIVE SELF-MANAGER
• RESPONSIBLE for managing their illness.
• EMPOWERED to self-manage their illness and HAVE CONTROL over their disease
• IMPROVE their HEALTH and QUALITY OF LIFE.
16
Summary
• Research illuminates the enormous complexities of providing SM interventions that are effective and appropriate for a wide diversity of needs in disadvantaged groups
• Highlight the need for deeper understandings of SM experiences of disadvantaged groups with CCs
17
Promising Ways Forward: Systems Approach
CDSM
Individuals
Groups
SM Behaviour Confidence Health Status
Chronic Condition Population
Public Health Strategy
Risk Complications Health
SMS
Individuals
Social Networks
Health Care & Non-health Professionals
Infrastructures
Policies
Whole Population
Whole System
Health Inequities
18
Conclusion Many SM interventions/programs do not meet the needs of many disadvantage groups but we are heading in the right direction …
We need: new ways of thinking about SM and SMS new kinds of interventions a menu of SM program options population health intervention approaches (policy,
community, individual) whole of systems approach (health & social)
19
19
Thank you
20
Dr. Sue Mills New Investigator, BC Centre of Excellence for Women’s Health
Clinical Assistant Professor, School of Population and Public Health, University of British Columbia
Vancouver, Canada
EthnoEthno--cultural cultural
minorities and minorities and
chronic diseasechronic diseaseClinicianClinician--patient interactionspatient interactions
Charlotte Jones PhD, MD
Associate professor of Medicine, University of Calgary, LIBIN Cardiovascular Institute
Chair , Vulnerable Populations sub committee of Hypertension Canada Public Policy Pillar.
Objectives: Objectives: reducing health disparities in ethnoreducing health disparities in ethno--cultural cultural
minority adultsminority adults
�� Outline major known determinantsOutline major known determinants
�� Review literature on clinicianReview literature on clinician--patient patient
interactionsinteractions
�� Review published studies and knowledge Review published studies and knowledge
outlining interventions to optimize clinician outlining interventions to optimize clinician
–– patient interactionspatient interactions
Unequal TreatmentUnequal Treatment: HCP and racial and ethnic : HCP and racial and ethnic
disparities in health care disparities in health care
�� IOM review of 100 studiesIOM review of 100 studies
�� Adjusted for insurance status, income, accessAdjusted for insurance status, income, access--related related
factors, racial difference in severity of disease, cofactors, racial difference in severity of disease, co--
morbidities, public or private hospital care and age and morbidities, public or private hospital care and age and
gendergender
�� Patient, system and HCP factorsPatient, system and HCP factors
�� Intricately related Intricately related
Institute of Medicine: Unequal treatment: What HCP need to know about racial and ethnic disparities in health care. 2002
www.iom.com
Quality of clinical encounter Quality of clinical encounter
��Patients: Patients: Affect health and outcomesAffect health and outcomes
�� Self education and managementSelf education and management
�� Treatment adherenceTreatment adherence
�� Health promoting behavioursHealth promoting behaviours
��Physicians: Physicians:
�� Therapeutic inertiaTherapeutic inertia
�� Coordination of careCoordination of care
Clinical encounterClinical encounter
�� Physician uncertaintyPhysician uncertainty�� incomplete informationincomplete information
�� Time pressuresTime pressures
�� PhysicianPhysician--patient relationship patient relationship qualityquality�� Bias (prejudice)Bias (prejudice)
�� StereotypingStereotyping
�� Patient mistrust and refusalPatient mistrust and refusal
�� Patient reactions to clinicians Patient reactions to clinicians beliefs and attitudesbeliefs and attitudes
Clinical uncertaintyClinical uncertainty
�� Any uncertainty and clinical decision makingAny uncertainty and clinical decision making
�� Communication: severity, symptoms, signals, clues, Communication: severity, symptoms, signals, clues,
health literacy, language, cultural beliefs* health literacy, language, cultural beliefs*
�� Likelihood of patientLikelihood of patient’’s conditions: physician expectationss conditions: physician expectations
�� Time limitations: Time limitations: ””listeninglistening””
�� Incomplete informationIncomplete information
�� Gender and racial and language concordance**Gender and racial and language concordance**
* Macaden, L. diabetes Voice, 2007 ** Joumath G et al. Blood Pressure, 2010, Traylor et al. J gen Int Med., 2010.
PhysicianPhysician--patient relationship patient relationship
qualityquality
�� Patient physician relationshipPatient physician relationship
�� Quality of communicationQuality of communication
�� Interpersonal treatmentInterpersonal treatment
�� PhysicianPhysician’’s knowledge of the patients knowledge of the patient
�� Patient trustPatient trust
�� Structural aspects of careStructural aspects of care
�� Access to care * (and continuity of care)Access to care * (and continuity of care)
�� VisitVisit--based continuitybased continuity
�� Duration of primary care relationshipDuration of primary care relationship
�� Integration of careIntegration of care
Safran, DG. J Family Practice, 2001 * Shi, L et al.,Am J Pub health, 2003
Bias Bias (Prejudice)(Prejudice)
�� ½½--3/4 whites believe AA less intelligent, less 3/4 whites believe AA less intelligent, less
educated, more prone to violence, drug and educated, more prone to violence, drug and
alcohol abuse, prefer to live off of welfare, less alcohol abuse, prefer to live off of welfare, less
adherent to meds and advice adherent to meds and advice
�� HCP: assumption: bias rare, but may be HCP: assumption: bias rare, but may be
unconsciousunconscious
StereotypingStereotyping
�� Individuals belong to a group: group characteristics are Individuals belong to a group: group characteristics are
unconsciously and automatically applied to the individualunconsciously and automatically applied to the individual
�� Disconnect between HCP desire to provide equal Disconnect between HCP desire to provide equal
treatment and actual clinical decision making treatment and actual clinical decision making
�� Unconscious even in those strongly egalitarianUnconscious even in those strongly egalitarian
�� Influences how information interpreted and recalledInfluences how information interpreted and recalled
�� Women are less likely to have CVDWomen are less likely to have CVD
Burges DJ et al. J Gen Int Med.,2004
Patient response: Mistrust, refusalPatient response: Mistrust, refusal
�� PatientPatient’’s and providers behaviour and attitudes may s and providers behaviour and attitudes may
influence each other reciprocally.influence each other reciprocally.
�� Mistrust, refusal, noncomplianceMistrust, refusal, noncompliance
�� Poor HCP engagementPoor HCP engagement
�� Result of patient previous negative interactions and Result of patient previous negative interactions and
discriminationdiscrimination
�� Less likely to be offered aggressive treatments and servicesLess likely to be offered aggressive treatments and services
�� Racism and mistrust were controlled for, race was not a Racism and mistrust were controlled for, race was not a
significant predictor of satisfaction with care**significant predictor of satisfaction with care**
**LaViest TA et al. Med Care Res Rev,2000
Patient issuesPatient issues
�� InterInter--personal: personal:
�� Communication barriers, social support, cultural competence Communication barriers, social support, cultural competence
of HCP, culturally dissimilar styles of interaction with HCPof HCP, culturally dissimilar styles of interaction with HCP
�� IntraIntra--personal: Cultural beliefs about health and diseasepersonal: Cultural beliefs about health and disease
�� ExtraExtra--personal: access, environmental, other illnessespersonal: access, environmental, other illnesses
�� SocioSocio--demographic: income, education, habitationdemographic: income, education, habitation
�� Knowledge of diseases and their riskKnowledge of diseases and their risk
�� Differing modes of symptomsDiffering modes of symptoms
Khunti, K., Samani, NJ. Heart, 2003, King, KM, et al., Qual Health Res., 2007
Patient reactions to clinicians Patient reactions to clinicians
beliefs and attitudesbeliefs and attitudes
�� Patients reactions and behaviors may Patients reactions and behaviors may
reflect HCP attitudes and beliefsreflect HCP attitudes and beliefs
�� The more motivated Docs were more The more motivated Docs were more
confident, empathetic, supportive, confident, empathetic, supportive,
optimistic & had more rewarding patientoptimistic & had more rewarding patient--
doc relationships and better HBP (lipid**) doc relationships and better HBP (lipid**)
control rates*.control rates*.
* Consoli SM et al., J Hypertension, 2010. ** Franciosi, M et al.Am Heart J.2005.
PatientPatient--physician: physician: symmetry of beliefssymmetry of beliefs
�� PhysicianPhysician--patients with patients with highly similar beliefs highly similar beliefs
regarding the degree of personal control regarding the degree of personal control
over their health outcomesover their health outcomes
�� Better medication adherence and blood Better medication adherence and blood
pressure outcomes than those where patient pressure outcomes than those where patient
held stronger beliefs in their own personal held stronger beliefs in their own personal
control than did their physiciancontrol than did their physician
Christensen, AJ, et al. J Gen Int Med., 2010
What can HCP do to help What can HCP do to help
eliminate disparities ?eliminate disparities ?
�� Education: Education:
Awareness that stereotyping and bias exist Awareness that stereotyping and bias exist
�� Cross cultural / cultural competence trainingCross cultural / cultural competence training
�� Attitudes (cultural awareness / sensitivity)Attitudes (cultural awareness / sensitivity)
�� Knowledge: multicultural/categorical approachKnowledge: multicultural/categorical approach
�� Skills: crossSkills: cross--cultural approachcultural approach
�� Annual practice audit :Annual practice audit :
�� Regular group and individual performance with Regular group and individual performance with
feedback.*feedback.*
* Ruzicka, M., Leenen, FH. Curr Hypertens Reports, 2006
What can health systems do to What can health systems do to
eliminate disparities?eliminate disparities?
1.1. Raise public and HCP awareness of the problemRaise public and HCP awareness of the problem�� Broad sectors: HCP, patients, payors, health plan purchasers, soBroad sectors: HCP, patients, payors, health plan purchasers, society at largeciety at large
�� Public education: culturally appropriate, tailored to health litPublic education: culturally appropriate, tailored to health literacy levelseracy levels
�� Provision of Provision of ““patient held minipatient held mini--recordrecord”” of test resultsof test results
�� Provide tools for HCP to understand and manage cultural and lingProvide tools for HCP to understand and manage cultural and linguistic uistic diversitydiversity
2.2. Collect/monitor data on access & utilization by Collect/monitor data on access & utilization by race, ethnicity and primary languagerace, ethnicity and primary language
3.3. Base resource allocation decisions on Base resource allocation decisions on published guidelinespublished guidelines
Health systems interventionsHealth systems interventions--22
4. 4. Translators, videos, location, timing etc.Translators, videos, location, timing etc.
5. Insure physician payments do not restrict 5. Insure physician payments do not restrict minority patientsminority patients’’ accessaccess
6. HCP practice change : improve access and 6. HCP practice change : improve access and continuity: reminders, evidencecontinuity: reminders, evidence--based decision based decision support systems, automated patient resupport systems, automated patient re--call (get call (get HCP and patient input!!)HCP and patient input!!)
7. Use community health workers and 7. Use community health workers and multidisciplinary treatment/prevention teams, multidisciplinary treatment/prevention teams, case managers, peer support, Cultural brokerscase managers, peer support, Cultural brokers
Community capacity, Community capacity,
empowerment empowerment
�� Community health advisors (mentors, advocates)*Community health advisors (mentors, advocates)*
�� Work within the communities in which they liveWork within the communities in which they live
�� Cultural brokersCultural brokers
�� Engage members of their communities in activities Engage members of their communities in activities designed to promote (e.g. diabetes) managementdesigned to promote (e.g. diabetes) management�� Health fairsHealth fairs
�� Grocery store toursGrocery store tours
�� Walking, talking groups, support groupsWalking, talking groups, support groups
�� Community, clinic, religious facility, community center educatioCommunity, clinic, religious facility, community center educational nal and screening eventsand screening events
* Jenkins, C, et al. Pub health Rep., 2004
Community health advisors*Community health advisors*
��Liaise with HCP and the systemLiaise with HCP and the system
�� FollowFollow--up missed health care appointmentsup missed health care appointments
�� Linkage with pharmacy (and assistance programs)Linkage with pharmacy (and assistance programs)
�� Linkage to local CDM programsLinkage to local CDM programs
�� Linkage and help with access to CDM information and resourcesLinkage and help with access to CDM information and resources
�� Support and reSupport and re--enforce enhanced public educationenforce enhanced public education
�� Determine preferences for selfDetermine preferences for self--management support (telephone, management support (telephone,
group visits etc.)group visits etc.)
* Jenkins, C, et al. Pub health Rep., 2004
Legal, policy, regulatory Legal, policy, regulatory
1.1. Assure public and private systems equal and that all Assure public and private systems equal and that all have access to or coverage for evidencehave access to or coverage for evidence--based carebased care
2.2. Support stability of HCP Support stability of HCP ––patient relationship by patient relationship by providing guidelines for minimum case loads, providing guidelines for minimum case loads, multidisciplinary support for care, time flexibility for multidisciplinary support for care, time flexibility for clinical encounters, repeat visits with same HCPclinical encounters, repeat visits with same HCP
3.3. Increase training and employment of racial and Increase training and employment of racial and ethnic minorities in HCP fieldsethnic minorities in HCP fields
Eliminating health disparitiesEliminating health disparities
��A comprehensive, multiA comprehensive, multi--level strategy level strategy
with input form all stakeholderswith input form all stakeholders�� HCP: optimize quality of clinical encounterHCP: optimize quality of clinical encounter
�� Patients: appropriate education and enhanced Patients: appropriate education and enhanced
support systems to link with the HCP support systems to link with the HCP
and system (CHAand system (CHA’’s)s)
�� Health system support change Health system support change
Thank Thank –– youyou
Community health workersCommunity health workers
�� FamilyFamily--centeredcentered
�� Home community health workersHome community health workers
�� Youth ambassadorsYouth ambassadors
�� ElderElder--youth coalitionsyouth coalitions
�� Trained community membersTrained community members
Karen M. Kobayashi, PhDAssociate Professor, Sociology
Research Affiliate, Centre on Aging
� Annotated Bibliography on Self-Management Support for Ethno-cultural Minority Older Adults (funded by BCHCCRN)
� Review of published articles from Canada, the UK, Australia, and the US (post-1990)
� Foci of the articles: CDSMP, SMS, self-care interventions, self-help, health literacy, coping and lifestyle practices related to chronic disease
� Five Main Themes
1.Self-management support (SMS) for marginalized or disadvantaged populations
2.SMS among older populations
3.SMS for ethno-cultural minority groups
4.SMS for ethno-cultural minority older adults
5.Other literature: health literacy, CAM, capacity-building/community development, cultural competence/safety, patient empowerment in self-management
� Chronic care policy and health inequities
� Efficacy of SMS for marginalized and disadvantaged populations
� Unique considerations for effective SMS program implementation
� Multiple ethno-cultural group studies
� Chinese immigrant and national studies
� South Asian (Bangladeshi) immigrant studies
� Hispanic studies (US)
� African American studies (US)
� CDSMP adaptations for EMOA
� Alternative SMS for EMOA
� Cultural competency in SMS
� Chronic disease, self care, coping and lifestyle practices among EMOA
� Interventions for low health literacy in SMS
� Health literacy and SMS among older adults
� Health literacy and SMS for EM groups◦ Health literacy and SMS among EMOA
� CAM and SMS among older adults
� CAM and SMS among EM populations◦ CAM and SMS among EMOA
� SMS and capacity-building/community development among older adults
� SMS and capacity-building/community development for EM groups◦ For EMOA
� Cultural competence and cultural safety
� Patient empowerment in self-management
� The CDSMP may not appeal to/work for EMOA
� Viable alternative models are not proposed in the literature
� Requires a paradigm shift: self management at the individual level needs to be situated within familial, community, and societal contexts � model of collective self-management
