Transcript RHD in Pregnancy AMOSS Qualitative Study Outcomes

AMOSS : Australasian Maternity Outcomes Surveillance System
Rheumatic heart disease in pregnancy:
a qualitative study
October 2016
Associate Professor Suzanne Belton
Charles Darwin University
School of Health
AMOSS– Investigators and project team
Chief Investigator: Professor Elizabeth Sullivan, University of Technology
Professor Lisa Jackson Pulver, UNSW Medicine
Professor Jonathan Carapetis, Telethon Institute for Child Health Research
Dr Warren Walsh, UNSW Medicine
Professor Michael Peek, University of Sydney
Dr Claire McLintock Auckland City Hospital Associate
A/ Professor Suzanne Belton, Charles Darwin University
Professor Sue Kruske
Professor Alex Brown, Baker IDI NT
A/ Professor Elizabeth Comino, UNSW Medicine
Ms Heather D’Antoine, Menzies School of Health Research
Dr Simon Kane, Lyell McEwin Hospital
Professor Juanita Sherwood, University of Technology
Dr Sujatha Thomas, Royal Darwin Hospital
Dr Bo Remenyi, Menzies School of Health Research NT
Ms Geri Vaughan, University of Technology
AMOSS team
Geraldine Vaughan, Nasrin Javid, Zhuoyang Li (UTS
Sydney)
Vicki Masson (NZ PMMRC),
Kylie Tune, NT Menzies School of Health Research,
Faith Mahony (RHD NZ)
AMOSS
Surveillance & research:
rare & serious
conditions in pregnancy
(‘what happens, how is
it managed, what are
the outcomes’)
• Maternity units >50
birth/year
• = 300 sites ANZ
• Dedicated AMOSS
co-ordinators
• Report cases
(surveillance) and
complete webbased surveys
AMOSS
Northern
Territory
28 per 1000
Aboriginal &/or
Torres Strait
Islander women
35% of cases
(1% of Australia’s
total population)
Shaded area =
Remote and very
remote Australia
Overall
0.4 per
1000 women
RHD in women
Age-specific incidence of rheumatic heart
disease, Northern Territory, 1997 to 2010
Source: Lawrence et al Rheumatic Heart Disease: Lessons From the Register 2013
Circulation
Physiological impact of RHD in pregnancy
Regurgitation & mild
stenosis:
Regular monitoring
(echos & clinical checks)
Moderate-severe stenosis:
May be triggered by physiological stress
(pregnancy!)
Mitral valve becomes thickened &
immobile
Left atria pressure builds >> chamber
swells
Increased pulmonary artery pressure
(PAP)
Blood flow back to lungs > pulmonary
oedema
Heart failure
Atrial fibrillation + risk of
thromboembolism
AMOSS RHD in pregnancy study
Aim: To provide an evidence base to improve clinical
care and associated maternal and perinatal outcomes
for women with RHD in pregnancy.
The RHD in pregnancy study
Mixed methods study of women with RHD in pregnancy –
Australia & New Zealand
Quantitative - International
• Surveillance
• Descriptive study
Qualitative – Northern Territory
• Women’s journeys with RHD
during pregnancy
• Observations Interviews
• General medical & cardiac / obstetric history
• Clinical pathway through pregnancy/postpartum
• Diagnosis and management of RF/RHD
NHMRC project grant 2012-16 (#1024206)
Research Questions
1. What specific cultural, community and social
needs do Aboriginal and non-Aboriginal
women have that are not currently addressed
in health service access, counselling and
clinical management of RHD in pregnancy,
and how does that vary across Northern
Territory?
2. What degree of health literacy and awareness
exists amongst women with RHD in relation to
this condition and its impact in pregnancy?
3. How can health services more effectively meet
the needs of these women, including access,
education, counselling and clinical
management of RHD in pregnancy?
Patient journeys
• Antenatal, birth, postpartum
• From home to hospital, hostel to home
• Complex - involve multiple geographic and health care
sites, multiple health care staff and services
Dimensions of health
Issue
Explanation
Social and
What is the person’s usual home arrangements?
emotional wellbeing Does this person have any particular concerns?
Family and
community
commitments
Is this person caring for children or family members?
What roles does this person have in community and
workplace and how are they impacted by illness?
Personal, spiritual
and cultural
considerations
Are there particular personal, spiritual or cultural
considerations for and by this person?
Physical and
biological
Are there any new or existing physical health issues?
Recruitment inclusion criteria
Women’s characteristics
Illness characteristics
Aged 18 and above
Inclusion on the Rheumatic Heart
Disease Register
Regional, rural or remote location in
the Northern Territory
Any stage of illness – except resolved
Pregnant, preference for early
gestation
Using anticoagulants, or not
Any parity
Previous cardiac surgery, or not
Willing to talk to researcher and
introduce her family
Willing to allow researcher to join
her health care journey
Code
Languages Area of NT
Age
Cardiac Information
Maternity Information Infant Information
1
Fluent English
One Indigenous language
Island
Speaks multiple
Indigenous languages
Island
Speaks multiple
Indigenous languages
Victoria Daly District
One Indigenous language
English as second language
West Arnhem District
37
Mild RHD
Breathless in pregnancy
Medications nil
Severe RHD diagnosed in
pregnancy
Medications
Severe RHD
Admitted to hospital interstate
Planned surgery for valve repair
ARF in childhood
Mild RHD
Prophylaxis only
Eighth pregnancy
History of 1
stillbirth - SIDS
First baby
Third pregnancy
Live premature baby
5
One Indigenous language
Central Desert District
37
Severe RHD
Prophylaxis only
Third pregnancy
Live term baby
6
Speaks multiple
31
Indigenous languages
Arnhem Land outstation
One Indigenous language 26
English as second language
Regional Town
Moderate RHD
Third pregnancy
Live term baby
C Section
Severe RHD
Waiting for surgical repair
First baby
NVB
Live term baby
Fluent English
One Indigenous language
Katherine District
Severe RHD
Medications
Third pregnancy
Live term baby
2
3
4
7
8
23
22
25
31
First baby
Live term baby
Homebirth
Live term baby
Assisted delivery
PPH
Live term baby
Birth in intensive care
Acceptance of LAB Prophylaxis
Code
Prophylactic injection
Patient 1
Needed 117 injections over nine years. Had 56 injections.
Patient 2
Newly diagnosed
Patient 3
Needed 13 injections over a year. Had 6 injections.
Patient 4
Needed 130 injections over ten years. Had 80 injections.
Patient 5
Needed 130 injections over ten years. Had 118 injections.
Patient 6
Needed 130 injections over ten years. Had 56 injections.
Patient 7
Needed 65 injections over five years. Had 31 injections.
Patient 8
Needed 117 injections over nine years. Had 65.
Findings
• No single person or service coordinates an entire patient journey
• Patients are most vulnerable during transfer or discharge but even in
routine care was not ideal
• Health literacy is very low (make no assumptions)
• Patients rarely understood the severity of their illness or its implications
for childbearing.
• Patients struggled to comply with confusing health directives and a
fragmented health system
• Interpreters were never offered and health care was culturally
incompetent
• Hunger, social chaos and domestic violence inhibits patients’ ability to
self-manage care
Communication, integration, collaboration
and cultural safety are key aspects of
successful journeys!
Understanding?
Themes
Quotes
Living conditions and the environment
Research Assistant: Yeah, what causes rheumatic heart? Why do you have it?
Helen: They said it was house overcrowded, if you’ve got sores, open sores you’re not
allowed to be out in the rain.
Research Assistant: How are you going to stop this little baby inside you from getting
rheumatic?
Helen: Well, [pause] live [pause] in a [pause] house [pause] not so crowded.’
Intra-familial
Tania’s mother: So it’s like, ah, whenever Aunty was very sick, the Aunty would be
explaining to her like, if I get sick, very sick, if I die, I think my sickness would come to
you; that’s what she said.
Bugs
Kate: Oh yeah, then my nephew, he had that swollen tongue, like something in your
throat. He felt sick. Coughing constantly and every time when he drank something, like
water or tea it felt like something’s stuck down in his throat but it’s the, what they call that,
[pause]I think it was the bug that was in him. But I am not sure why I have RHD. I don’t
know.
Aboriginal disease
Josie: It’s not from the white man. No. Only Aboriginal people get it so it must be from
Aboriginal.
Understanding?
All heart disease is the same
Research Assistant: Why are you short of breath?
Jackie: It’s from smoking and not from my heart.
Caroline: Yeah, there’s a problem around the community with the rheumatic heart,
but someone – we hear someone have just had stroke, then the community talk
about this – it might be this problem, stress. And, like, they come – we have a bit of
a community meeting, what’s happening – someone has pass away from the heart
disease. Come together, have a talk, what’s causing it and why? … ‘Cause we lost
few, families who has been had heart attack just recently, sudden death from that
heart disease.
Don’t know
Helen: What rheumatic heart really means in our way, like in even pigeon English and
Creole is, you know, [pause] for heart or something, you know, like something wrong with
your heart. And you know, these symptoms come up, you have to go check-up straight
away. [sounding unsure]
Research Assistant: Do you know what causes Rheumatic Fever?
Jackie: No
Research Assistant: Has anyone ever sat down with you and explained
Rheumatic Fever? JP: No
Research Assistant: And is it bad to have rheumatic? Does it even matter?
Debbie: I don’t know really how I can stop my baby getting that heart disease.
Research Assistant: Is it possible to stop?
Debbie: I don’t know.
Research Assistant: OK. Is rheumatic a problem? Is it a serious problem? Is it a worry?
Debbie: No.
Communication
Aufbau and Funktion des Herzens
Das Herz - Organ, das den Blutkreislauf
durch regelmäßige Zusammenziehung
und Dehnung antreibt und in Gang hält
• Herzhalfte
• Kammer
• Vorhof
• Klappen (13 meanings)
• Sauerstof und Korperkreislauf
Aufbau und Funtion des Herzens
•
https://www.youtube.com/watch?v=KRxZyZb3VS8
Take Home Messages
1. Do not assume that your patient understands you – even if they
appear to have conversational English!
2. Get an interpreter and talk with your patient and their family
3. Do not rely on written or spoken English
4. Health education should be ongoing, gender appropriate and
matched to the life stage of the patient
5. Do not try to educate or deeply communicate with your patient if she
is hungry, homeless, hypoxic or stressed – she won’t hear you
6. Coordinate care with a multi-disciplinary team
7. Girls and women and families with a RHD diagnosis must be offered
reliable contraception and child-spacing information and services in
their own languages.
Did we know this already?
• Probably….
13 years ago…
Mincham, C, Toussaint, S, Mak, D & Plant, A (2003),
'Patient views on the management of Rheumatic Fever and Rheumatic
Heart Disease in the Kimberley: a qualitative study', Australian Journal of
Rural Health, vol. 11, pp. 260-5.
•Understanding RF and RHD – confused, superficial
•Compliance with management – but no personal system to support and
lots of other pressures
•Health staff and services – poor relationships, perceptions and attitudes
affected health care
See also:Cass A, Lowell A, Christie M, Snelling P, Flack M, Marrnganyin B, et al. Sharing the true stories: improving
communication between Aboriginal patients and health care workers. Medical Journal of Australia 2002;176(10):466 –
70.
Roe, YL, Zeitz, CJ & Fredericks, B 2012,Exploring how patient-clinician engagement contributes to health disparities
between Indigenous and non-Indigenous Australians in South Australia', BioMed Central Health Services Research,
vol. 12, no. 1, p. 397.
10 years ago…
Harrington, Z, Thomas, DP, Currie, BJ & Bulkanhawuy, J (2006),
'Challenging perceptions of non-compliance with Rheumatic Fever
prophylaxis in a remote Aboriginal community', The Medical Journal of
Australia, vol. 184, no. 10, pp. 514-7.
•Appropriate location for treatment, beliefs about the disease, confidence in
the health system, family support for treatments affect person care
outcomes
•Belief in efficacy of the treatment, refusal of treatment, inconvenience to
the patient, not ‘belonging’ to the health service, biomedical knowledge of
the disease
•Patients thought the staff should ‘care’ for them – they wanted to feel
connected
•Socially and culturally competent staff
•Did not refuse treatments
3 years ago…
Artuso, S, Cargo, M, Brown, A & Daniel, M (2013),
'Factors influencing health care utilisation among Aboriginal cardiac
patients in Central Australia: a qualitative study', BioMed Central Health
Services Research, vol. 13, no. 1, p. 83+.
Thank you
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To the women and their families
NT clinical staff across maternity and cardiac services
RHD Australia
NT Obstetricians, Cardiologists, Midwives, Nurses, Aboriginal
Liaison Workers
AHS across the NT and WA
Perinatal data support
Medical records ASH, KDH, RDH
Regional hospitals