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