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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 • • • • • • • • 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