10.45-11.15 Sandra Hotu Maori models of health · Stop counting, do something! A PERSON AND WHANAU...
Transcript of 10.45-11.15 Sandra Hotu Maori models of health · Stop counting, do something! A PERSON AND WHANAU...
Stop counting, do something! A PERSON AND WHANAU CENTRED APPROACH FOR MĀORI WITH CHRONIC AIRWAYS DISEASE
SANDRA HOTU
INTRODUCTION
u Backgroundu Qualitative
u Interviews with patients/whanau
u Developing the model using literature and focus groups with stakeholders
u Quantitativeu Testing the model in a pilot study
CHRONIC AIRWAYS DISEASE
u COPDu Asthmau Bronchiectasis
u Common model of healthcare delivery
CAD in Māori
u All levels of socioeconomic deprivation
u Poverty is not the only determinant, but compounds risk more than for NZ Europeans
u Morbidity and mortality > prevalence
u Reduced access to healthcare services
u Reduced quality of healthcare services
u Engagement
u Clinic DNA rates 14-20% (4-9% NZ Europeans)
Causes for Māori health inequity
u RACISMu Embedded into structures and practices in our society, invisible without
a critical lens
u INSTITUTIONALISEDu “Just the way it is” e.g. hospital beds, outreach services, clinic appointment
time
u INTERPERSONALu Unconscious bias e.g. DNA return to GP
u INTERNALISEDu Negative stereotypes e.g. avoid asking questions because won’t understand
(own fault, not doctor’s)
Causes for Māori health inequity
u COLONISATIONu Ideology based on white supremacy
u Hegemonyu Over time, the new group become the ‘mainstream’, the ‘norm’, benefiting
from ‘privilege’ which is invisible and unearned
METHODOLOGY
u Kaupapa Māori approach u Critical theory
u Māori world view
u Constructivist grounded theory methodsu construct not discover
A NOVEL MODEL OF CARE FOR MāORI WITH CHRONIC AIRWAYS DISEASE
INTERVIEWSSemi-structured interviews with Māori with chronic airways disease and their whanau
FOCUS GROUPS1. Participants from semi-
structured interviews
2. Respiratory nurse specialists
3. Respiratory physicians
4. Physiotherapists
5. General practitioners
6. Funding and planning (Auckland District Health Board)
INTERVENTIONPilot, feasibility intervention study
INTERVIEWS
SEMI-STRUCTURED INTERVIEWSFINDINGS
u 17 PARTICIPANTSu 9 Māori with CAD u 8 Whanau – COPD 2
u Age – 46-75 years (50% Māori population now <20yo)
u NZ Deprivation score 6 (2-10)
u Education
u Occupation
SEMI-STRUCTURED INTERVIEWSFINDINGS
uDIVERSE IDENTITIES
u Involvement in cultural activities , knowledge of tikanga, te reo Māori
u Experience of colonisationu alienation of land, language, cultural identity
u Response to colonisationu Acceptance à Resistance
u Engagement with health servicesu Underlying reasons were complex
CHRONIC DISEASE MANAGEMENT
CONNECTION
KNOWLEDGE
ADHERENCE
OUTCOMES
THERAPEUTIC ALLIANCE
CHRONIC DISEASE MANAGEMENT
CONNECTION
KNOWLEDGE
BEHAVIOUR
OUTCOMES
THERAPEUTIC ALLIANCE
THERAPEUTIC ALLIANCE, CONNECTION
u High value in whanaungatanga - relationships
I don’t like going to other doctors. They don’t know me, they don’t know my situation.
TRUST
u CENTRAL u ENHANCING FACTORS
u Honesty, holistic, continuity of care (informational, interpersonal –specialist, GP )
u HISTORYu Alienation/Retention
u FEELING VALUEDu “just a number”, “a tick box”
u FEELING UNDERSTOODu Māori healthcare workers
TRUST
u Some participants responded ONLY to Māori health workers/doctors
She’s the first doctor I’ve ever liked here, because she’s Māori
TRUST
u RESPONSESu Loyalty
u Adopt health promoting behaviours
TRUST
u BARRIERSu History – marginalisation
u Blamed for causing respiratory disease
u Healthcare workers “not listening”
u Inadequate information
u RESPONSESu Anger
u …it was the way she was talking – I went, get out of my room. She goes, no, no, we… I says, get out of my room before I kill you!
u Withdrawl – interaction, DNAI’d rather play safe and not go back then I don’t upset anybody and I don’t get upset.
CHRONIC DISEASE MANAGEMENT
CONNECTION
KNOWLEDGE
BEHAVIOUR
OUTCOMES
THERAPEUTIC ALLIANCE
KNOWLEDGE
u Strong desire for knowledgeu Information often pitched at wrong level
They talk too fast and they use all their big words
u Even when the participant asked to make it simpler it wasn’t
u Reluctance by patients to make this clear to the clinician
Sometimes I will, if I don't understand I will say something – most of the time I just keep my mouth shut, just listen
CHRONIC DISEASE MANAGEMENT
CONNECTION
KNOWLEDGE
BEHAVIOUR
OUTCOMES
THERAPEUTIC ALLIANCE
BEHAVIOUR
CLINICIAN PERSPECTIVEu “Compliance”
u Physician control
u Patient obedience
u “Non compliance”u Often blamed on patient
PATIENT PERSPECTIVE
u Rather than thinking about their
behaviour in terms of compliance
or non-compliance, patients
prioritise what matters to them,
which is shaped and
constrained by values, beliefs
and means
PRIORITIES
spiritual
physical
emotional
social
Food and shelter
Anxiety and depression
Pain and dyspnoea
Stigma and shame
Dignity
Connections with land, language, whanau
Whanau first
PRIORITIES
u Values and beliefsu Values
u Tangi
u Beliefs
u Distrust – alienation land, language, ways
u Blame, stigma shame
u Smoking, risk behaviours, being sick, being “dumb”
u Meansu Financial
u Responsibilities
u Disability
u Literacy and life skills
PRIORITIES MeansValues
and beliefs
ALLIANCES
u Whanauu Valuable resource WHANAU ORA
u Trusted, knowledge of disease
u
u
I don’t like being waited on, but I would wait on somebody else
PRIORITIES
Alliances
MeansValues and
beliefs
POWER/SENSE OF CONTROL
Health professionalsu Being Māori
u Normalise Māori values and ways
u Promote trust
u Valued
u Understood
u Known
u Minimise blame and stigma
u Increase meansu Education
u Physical, emotional health
u Material resources
PRIORITIES
ALLIANCES
MeansValues and
beliefs
POWER/SENSE OF CONTROL
Interviews u Connection – Māori health professionals
u No one declined to be involved in the study - Some wouldn’t have agreed if not a Māori researcher - Underlying mistrust
u Relationship u Interview process facilitated a therapeutic relationship- Talked about participants’ lives,
including ‘being Māori’, rather than just disease focussed
u
u
u
u
à Disclosed information (hidden from other clinicians)
à Attended future clinics, pulmonary rehab
FOCUS GROUPS
Health systems and practices
u ASSUMPTIONSu CONNECTION
u TRUSTu Pakeha System
u Pakeha Health Professionals
u WAYS OF CONNECTIONu Time
u Biomedical focus
u Professionalism
u THERAPEUTIC ALLIANCE
CONNECTION
EDUCATION
ADHERENCE
OUTCOMES
Health systems and practices
u ASSUMPTIONSu EDUCATION
u Literacy
u Power
u THERAPEUTIC ALLIANCE
CONNECTION
EDUCATION
ADHERENCE
OUTCOMES
Health systems and practices
u ASSUMPTIONSu COMPLIANCE
u Engagement
u Knowledge
u Priorities
u Values And Beliefs
u Means
u THERAPEUTIC ALLIANCE
CONNECTION
EDUCATION
COMPLIANCE
OUTCOMES
Health systems and practices
u ASSUMPTIONSu OUTCOMES
u Mortality
u Morbidity
u THERAPEUTIC ALLIANCE
CONNECTION
EDUCATION
ADHERENCE
OUTCOMES
SOLUTIONS
u Critical consciousnessu Whakawhanaungatangau Education u Support
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGA TANGA
EDUCATION
SUPPORT
GOALS
SOLUTIONS
CRITICAL CONSCIOUSNESS
u Understand role of colonisation in Māori health inequitiesu Hegemony, blind privilege, racism
u Understand ideologies and assumptions underlying mainstream health structures and practices
u Understand the role of health professionals to challenge rigidhealth structures and practices to advance health equity
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGATANGA
EDUCATION
SUPPORT
GOALS
SOLUTIONS
WHAKAWHANAUNGATANGAu Establish trust
u Normalise Māori ways to form a connectionu Whakawhanaungatangau Māori healthcare workeru Te whare tapa wha
u Individual/whanau generated goals to align with clinical goals
u Timeu Flexibility
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGATANGA
EDUCATION
SUPPORT
GOALS
SOLUTIONS
EDUCATIONu Within therapeutic alliance based on trust
u Teach-back method tailored to needs
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGATANGA
EDUCATION
SUPPORT
GOALS
SOLUTIONS
SUPPORTu Medications
u Cost, techniqueu Lifestyle changeu Action planu Clinic attendance
u Timeu Flexibility
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGATANGA
EDUCATION
SUPPORT
GOALS
SOLUTIONS
GOALSAlign personal/financial/whanau/spiritual goals with clinical goals
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGATANGA
EDUCATION
SUPPORT
GOALS
PILOT STUDYu RESEARCH QUESTION
u Can a novel approach to chronic airways disease management for Māori improveu Engagement in a culturally safe manner
u Improve knowledge about chronic airways disease and self management
u Sense of control over chronic airways disease
PILOT STUDY
SECONDARY OUTCOMES
u Signalu Influence health promoting behaviours
u Morbidity (exacerbation rate +/- hospitalisation rate)
u Improve quality of life
u Improve psychological distress
u Feasibilityu Recruitment, retention, questionnaires, methods
METHODS
u6 weeks
uStudy team:uSHuWF
THERAPEUTIC ALLIANCE
CRITICAL CONSCIOUSNESS
WHAKAWHANAUNGA TANGA
EDUCATION
SUPPORT
GOALS
FINDINGS
u 10 PARTICIPANTS
u Age range 50 – 73
u Social deprivation – education, income, housing, risk behaviours
u All had missed at least one respiratory outpatient clinic appointment (5 years)
u COPD (9), Asthma (5), Bronchiectasis (2)
u Lung function (predicted FEV1) 10% - 70%, avg 44%
FINDINGSu PRIMARY OUTCOMES
u ENGAGEMENT
u Attendance 100%
u CULTURAL SAFETY, PATIENT REPORTED EXPERIENCEu 99.6%
u “YES DEFINITELY”
u Respected, valued, understood, listened to, comfortable to ask questions, understandable
u KNOWLEDGEu Statistically significant improvement in knowledge
u Immediately post session
u At completion of study (although lower than immediately post session)
u SENSE OF CONTROL OVER DISEASE
u Statistically significant improvement
FINDINGSu SECONDARY OUTCOMES
u MEDICATIONSu No significant differences – only one participant had not filled any prescriptions in the 3
month period prior to the study
u ACTION PLANu There was a statistically significant improvement in ‘hypothetical scenario’ scores pre
and post studyu LIFESTYLE CHANGE
u No statistically significant difference in cessation in smoking or alcohol use or daily exercise time pre and post study
u CLINIC ATTENDANCE u Respiratory clinic with SH
u 4 participants 100%, 1 participant 66% attendance rate
u Non-respiratory clinicu 3 participants 100%, 2 participants 0%, 1 participant 30%
FINDINGSu SECONDARY OUTCOMES
u MORBIDITYu Exacerbation rate – data not available yet
u All but one participant received at least one course of antibiotics and prednisone during the study
u Toughing out symptoms or severe disease
u QUALITY OF LIFEu CAT
u Hua Ora
u HADS
u Kessler
u Resilience
u No statistically significant difference
Feasibility
u Recruitment
u 10/23 potential participants
u All but 1 known to research team or recommended by GP
u Retention
u Flexibility
u Location
u Time
Reflections
u Critical consciousnessu Acceptable
u Whakawhanaungatangau Empathy ++
u Greater understanding of context and ability to tailor management planu Whanau noticeably absent
u Educationu Simple strategies still too complicatedu Time, reinforcementu Role for peer educators
u Behavioursu Short time period for behavioural change
Reflections
u Professionalismu Confidentiality
u Need the whole packageu Loyalty can only go so far
u Need to consider context and priorities
u Mentally exhaustingu Multidisciplinary Disciplinary Team (social worker)
u Outreach services essential
u Get it right for Māori , get it right for everyone
Nga mihi nui
u Participants and whanau
u Research teamu Professor John Kolbe - The University of Auckland, Auckland District Health Board
u Dr Matire Harwood - Te Kupenga Hauora Maori, The University of Auckland, Auckland District Health Board
u Dr Chris Lewis - Auckland District Health Board
u Wendy Fergusson - Auckland District Health Board
u Fundingu Auckland District Health Board - Respiratory Fellowship
u Health Research Council of New Zealand, Asthma and Respiratory Foundation -Clinical Research Training Fellowship
u Asser Trust - Grant to undertake qualitative research