Parent and healthcare professional experiences of critical congenital heart disease in New Zealand to advance health equity.

BACKGROUND: Higher odds of survival have been reported in European infants compared to Indigenous Maori and Pasifika infants with critical congenital heart disease in New Zealand. We therefore aimed to understand how to mitigate this disparity by investigating the parent and healthcare professional experiences' of critical congenital heart disease healthcare in New Zealand. METHODS: A prospective qualitative study utilising semi-structured interviews was conducted on a cohort of purposefully sampled parents and health professionals with experience of critical congenital heart disease healthcare in New Zealand. Parents were recruited after a fetal critical congenital heart disease diagnosis and offered two interviews at least three months apart, whilst multidisciplinary fetal and cardiosurgical health professionals were interviewed once. Interviews were recorded and transcribed verbatim before coding, categorization and qualitative analysis. RESULTS: During 2022 and 2023, 45 people participated in 57 interviews (25 parents: 19 mothers, 6 fathers; Indigenous Maori, n = 5; Pasifika, n = 6; Asian, n = 4; European, n = 10; and 20 healthcare professionals: European n = 17). The three lessons learned from participants were: (1) Minoritized groups experience disparate healthcare quality; (2) healthcare systems are under-resourced to provide equitable support for the differential needs of grieving parents; and (3) healthcare systems could engage minoritized families more optimally in shared decision-making. CONCLUSIONS: According to the experiences of parents and healthcare professionals, persisting inequities in CCHD healthcare quality occur by ethnic group, with the New Zealand healthcare system privileging European families. The concepts from this study could be translated by healthcare leaders, policymakers, and professionals into evidence-based healthcare system improvements to enhance experiences for non-European families more broadly.

A study of Samoan, Tongan, Cook Island Maori, and Niuean infant care practices in the Growing Up in New Zealand study.

BACKGROUND: Despite a low rate of infant mortality, Aotearoa New Zealand has a high rate of Sudden Unexpected Death in Infants (SUDI), with disproportionate impact for Pacific infants. This study explored the infant care practices, factors and relationships associated with increased risk of SUDI amongst Tongan, Samoan, Cook Islands Maori, and Niuean mothers in New Zealand, to inform evidence-based interventions for reducing the incidence of SUDI for Pacific families and their children. METHODS: Analysis comprised of data collected in 2009-2010 from 1089 Samoan, Tongan, Cook Islands Maori and Niuean mothers enrolled in the Growing Up in New Zealand longitudinal cohort study. The sleeping environment (bed-sharing and sleep position) of the infants was assessed at 6 weeks. Multivariable logistic regression analysis were conducted, controlling for sociodemographic factors to explore the association between selected maternal and pregnancy support and environment factors and the sleeping environment for infants. RESULTS: Mothers who converse in languages other than English at home, and mothers who consulted alternative practitioners were less likely to follow guidelines for infant sleeping position. Similarly language, smoking, alcohol, household dwelling, crowding and access to a family doctor or GP were associated with mothers following guidelines for bed-sharing. CONCLUSION: The impact of SUDI on Pacific infants may be lessened or prevented if communication about risk factors is more inclusive of diverse ethnic, cultural worldviews, and languages. Societal structural issues such as access to affordable housing is also important. This research suggests a need for more targeted or tailored interventions which promote safe sleeping and reduce rates of SUDI in a culturally respectful and meaningful way for Pasifika communities in Aotearoa, New Zealand.

Investigating the health status of primary school children in Tonga: Lessons learnt and reflections on field work in the Pacific Islands.

Globally, the child health focus has been on reducing under-5-year mortality, with large populations in low-resource regions prioritised. Children in older age groups, particularly in less populated regions such as the Pacific, have received limited attention. Child health research in the Pacific region has been lacking, and research approaches for the region have historically been from Western biomedical paradigms. We completed the study of primary school children's health over a period of 5 years. Firstly, we conducted a literature review, then we completed an audit of hospital admissions of primary school children, then we completed a two-round Delphi process and finally, we piloted the survey in three primary schools. Our results found there were high levels of oral health problems, ear health, obesity and exposure to violence and poverty impacting on the quality of health of primary school-age children. Identifying these indicators was made possible by the partnerships and trust established by the study team and provides specific and measurable targets for future work to improve the quality of child health outcomes. This paper describes key field work lessons learnt for research in the Pacific region. It must: (i) be on the platform of relationship, cultural safety and local ownership; (ii) include consideration of holistic Pacific paradigms of health; (iii) be adaptive to the context and environment; and (iv) be committed to long-term partnership and work.

Risk factors for acute rheumatic fever: A case-control study.

Background: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) remain an inequitable cause of avoidable suffering and early death in many countries, including among Indigenous Maori and Pacific populations in New Zealand. There is a lack of robust evidence on interventions to prevent ARF. This study aimed to identify modifiable risk factors, with the goal of producing evidence to support policies and programs to decrease rates of ARF. Methods: A case-control study was undertaken in New Zealand using hospitalised, first episode ARF cases meeting a standard case-definition. Population controls (ratio of 3:1) were matched by age, ethnicity, socioeconomic deprivation, location, sex, and recruitment month. A comprehensive, pre-tested questionnaire was administered face-to-face by trained interviewers. Findings: The study included 124 cases and 372 controls. Multivariable analysis identified strong associations between ARF and household crowding (OR 3·88; 95%CI 1·68-8·98) and barriers to accessing primary health care (OR 2·07; 95% CI 1·08-4·00), as well as a high intake of sugar-sweetened beverages (OR 2·00; 1·13-3·54). There was a marked five-fold higher ARF risk for those with a family history of ARF (OR 4·97; 95% CI 2·53-9·77). ARF risk was elevated following self-reported skin infection (aOR 2·53; 1·44-4·42) and sore throat (aOR 2·33; 1·49-3·62). Interpretation: These globally relevant findings direct attention to the critical importance of household crowding and access to primary health care as strong modifiable causal factors in the development of ARF. They also support a greater focus on the role of managing skin infections in ARF prevention. Funding: This research was funded by the Health Research Council of New Zealand (HRC) Rheumatic Fever Research Partnership (supported by the New Zealand Ministry of Health, Te Puni Kokiri, Cure Kids, Heart Foundation, and HRC) award number 13/959.

Health equity and wellbeing among older people's caregivers in New Zealand during COVID-19: Protocol for a qualitative study.

BACKGROUND: Knowledge of the challenges unpaid caregivers faced providing care to older people during the COVID-19 pandemic is limited. Challenges may be especially pronounced for those experiencing inequitable access to health and social care. This participatory action research study, located in New Zealand, has four main objectives, (i) to understand the challenges and rewards associated with caregiving to older care recipients during the COVID-19 pandemic restrictions; (ii) to map and collate resources developed (or mobilised) by organisations during the pandemic; (iii) to co-produce policy recommendations, identify useful caregiver resources and practices, prioritise unmet needs (challenges); and, (iv) to use project results in knowledge translation, in order to improve caregivers access to resources, and raise the profile and recognition of caregivers contribution to society. METHODS AND ANALYSIS: Maori, Pacific and rural-dwelling caregivers to 30 older care-recipients, and 30 representatives from organisations supporting caregivers in New Zealand will be interviewed. Combining data from the interviews and caregivers letters (from an archive of older people's pandemic experiences), framework analysis will be used to examine the interrelated systems of the human ecological model and the impact on caregiving experiences during the pandemic. Resources that service providers had created or used for caregivers and older people will be collated and categorised. Through co-production with caregivers and community partners we will produce three short films describing caregivers' pandemic experiences; identify a suite of resources for caregivers to use in future events requiring self-isolation, and in everyday life; and generate ideas to address unresolved issues.

Surviving versus thriving: The wellbeing of primary school aged children in Tonga.

AIM: To enable improvements in global child health, the focus must move beyond child survival to child wellbeing. In the Pacific Islands, the wellbeing of children has received little attention. This study aimed to investigate the wellbeing of children from three primary schools in Tonga. METHODS: A cross-sectional survey was completed in three primary schools in Nuku'alofa with children aged 5-15 years. The study participants (256 children, 143 caregivers) completed the Child Health and Illness Profile - Child Edition, CHIP-CE (Version 1.0). RESULTS: On average, >70% of children and caregivers described home and school environments as positive. From the children's reports, boys had significantly lower scores for risk avoidance than girls (3.40 vs. 3.73, P < 0.001). Children aged 5-7 versus 8-15 years had significantly lower scores for satisfaction (3.63 vs. 3.92, P = 0.002), resilience (3.34 vs. 3.56, P = 0.016) and achievement (3.25 vs. 3.62, P = 0.002). From the caregivers' report, girls had significantly lower scores for academic performance than boys (3.60 vs. 3.81, P = 0.04). Boys had significantly lower scores for individual risk association compared to girls (3.93 vs. 4.29, P = 0.01). Overall CHIP-CE scores were lower than those of comparable populations in the West, while at the same time protective factors were documented. CONCLUSIONS: Understanding child wellbeing in the Pacific is critical for strengthening protective factors known to mitigate poor child health outcomes. Continuing to base global child health success on child survival alone misses opportunities for improving the wellbeing of nations.

All-of-community by all-of-government: reaching Pacific people in Aotearoa New Zealand during the COVID-19 pandemic.

A large portion of Pacific communities throughout Aotearoa New Zealand continue to face socioeconomic hardship and have ongoing health needs that are affected by social and economic influences. The impact of COVID-19 has only exacerbated these needs and will continue to have an adverse effect on the current wellbeing, future health and sustainable development of these communities-if targeted efforts are not undertaken to meet their unique needs. The collective worldview of Pacific communities is fundamental to their existence; therefore, a response needs to be within a collective community. This viewpoint looks at the worldview of Pacific communities and the impact of COVID-19 and then discusses six key priorities for working with these diverse communities. The successful management and elimination of a pandemic should be assessed by how well Pacific and other vulnerable communities survive such a crisis.

Prospective community programme versus parent-driven care to prevent respiratory morbidity in children following hospitalisation with severe bronchiolitis or pneumonia.

BACKGROUND: Hospitalisation with severe lower respiratory tract infection (LRTI) in early childhood is associated with ongoing respiratory symptoms and possible later development of bronchiectasis. We aimed to reduce this intermediate respiratory morbidity with a community intervention programme at time of discharge. METHODS: This randomised, controlled, single-blind trial enrolled children aged <2 years hospitalised for severe LRTI to 'intervention' or 'control'. Intervention was three monthly community clinics treating wet cough with prolonged antibiotics referring non-responders. All other health issues were addressed, and health resilience behaviours were encouraged, with referrals for housing or smoking concerns. Controls followed the usual pathway of parent-initiated healthcare access. After 24 months, all children were assessed by a paediatrician blinded to randomisation for primary outcomes of wet cough, abnormal examination (crackles or clubbing) or chest X-ray Brasfield score ≤22. FINDINGS: 400 children (203 intervention, 197 control) were enrolled in 2011-2012; mean age 6.9 months, 230 boys, 87% Maori/Pasifika ethnicity and 83% from the most deprived quintile. Final assessment of 321/400 (80.3%) showed no differences in presence of wet cough (33.9% intervention, 36.5% controls, relative risk (RR) 0.93, 95% CI 0.69 to 1.25), abnormal examination (21.7% intervention, 23.9% controls, RR 0.92, 95% CI 0.61 to 1.38) or Brasfield score ≤22 (32.4% intervention, 37.9% control, RR 0.85, 95% CI 0.63 to 1.17). Twelve (all intervention) were diagnosed with bronchiectasis within this timeframe. INTERPRETATION: We have identified children at high risk of ongoing respiratory disease following hospital admission with severe LRTI in whom this intervention programme did not change outcomes over 2 years. TRIAL REGISTRATION NUMBER: ACTRN12610001095055.

Risk Factors for Acute Rheumatic Fever: Literature Review and Protocol for a Case-Control Study in New Zealand.

Acute rheumatic fever (ARF) and its sequela, rheumatic heart disease (RHD), have largely disappeared from high-income countries. However, in New Zealand (NZ), rates remain unacceptably high in indigenous Maori and Pacific populations. The goal of this study is to identify potentially modifiable risk factors for ARF to support effective disease prevention policies and programmes. A case-control design is used. Cases are those meeting the standard NZ case-definition for ARF, recruited within four weeks of hospitalisation for a first episode of ARF, aged less than 20 years, and residing in the North Island of NZ. This study aims to recruit at least 120 cases and 360 controls matched by age, ethnicity, gender, deprivation, district, and time period. For data collection, a comprehensive pre-tested questionnaire focussed on exposures during the four weeks prior to illness or interview will be used. Linked data include previous hospitalisations, dental records, and school characteristics. Specimen collection includes a throat swab (Group A Streptococcus), a nasal swab (Staphylococcus aureus), blood (vitamin D, ferritin, DNA for genetic testing, immune-profiling), and head hair (nicotine). A major strength of this study is its comprehensive focus covering organism, host and environmental factors. Having closely matched controls enables the examination of a wide range of specific environmental risk factors.

Do data from child protective services and the police enhance modelling of perinatal risk for paediatric abusive head trauma? A retrospective case-control study.

OBJECTIVES: First, to investigate whether there is a relationship between a family being known to child protective services or police at the time of birth and the risk of abusive head trauma (AHT, formerly known as shaken baby syndrome). Second, to investigate whether data from child protective services or police improve a predictive risk model derived from health records. DESIGN: Retrospective case control study of child protective service and police records. SETTING: Nine maternity hospitals. PARTICIPANTS: 142 consecutive cases of AHT admitted to a tertiary children's hospital from 1991 to 2010 and born in one of the nine participating maternity hospitals. 550 controls matched by the date and hospital of birth. OUTCOME MEASURE: Abusive head trauma. RESULTS: There is a relationship between families known to child protective services or police and the risk of AHT. Notification to child protective services: univariable OR 7.24 (95% CI 4.70 to 11.14). Involvement with youth justice: univariable OR 8.94 (95% CI 4.71 to 16.95). Police call-out for partner violence: univariable OR 3.85 (95% CI 2.51 to 5.91). Other violence offence: univariable OR 2.73 (95% CI 1.69 to 4.40). Drug offence: univariable OR 2.82 (95% CI 1.63 to 4.89). However, in multi-variable analysis with data from perinatal health records, notification to child protective services was the only one of these variables to remain in the final model (OR 4.84; 95% CI 2.61 to 8.97) and had little effect on overall predictive power. The area under the receiver operating characteristic curve was 89.5% (95% CI 86.6 to 92.5) using variables from health data alone and 90.9% (95% CI 88.0 to 93.7) when notification was added. CONCLUSIONS: Family involvement with child protective services or police is associated with increased risk of AHT. However, accessing such data at the time of birth would add little predictive power to a risk model derived from routine health information.

Congenital left heart obstruction: ethnic variation in incidence and infant survival.

OBJECTIVE: To investigate the relationship between ethnicity and health outcomes among fetuses and infants with congenital left heart obstruction (LHO). DESIGN: A retrospective population-based review was conducted of fetuses and infants with LHO including all terminations, stillbirths and live births from 20 weeks' gestation in New Zealand over a 9-year period. Disease incidence and mortality were analysed by ethnicity and by disease type: hypoplastic left heart syndrome (HLHS), aortic arch obstruction (AAO), and aortic valve and supravalvular anomalies (AVSA). RESULTS: Critical LHO was diagnosed in 243 fetuses and newborns. There were 125 with HLHS, 112 with AAO and 6 with isolated AVSA. The incidence of LHO was significantly higher among Europeans (0.59 per 1000) compared with Maori (0.31 per 1000; p<0.001) and Pacific peoples (0.27 per 1000; p=0.002). Terminations were uncommon among Maori and Pacific peoples. Total case fatality was, however, lower in Europeans compared with other ethnicities (42% vs 63%; p=0.002) due to a higher surgical intervention rate and better infant survival. The perinatal and infant mortality rate was 82% for HLHS, 15% for AAO and 2% for AVSA. CONCLUSION: HLHS carries a high perinatal and infant mortality risk. There are ethnic differences in the incidence of and mortality from congenital LHO with differences in mortality rate suggesting inequities may exist in the perinatal management pathway.

Child morbidity as described by hospital admissions for primary school aged children in Tonga 2009-2013.

AIMS: To describe inpatient utilisation patterns for primary school aged children in Tonga. METHODS: We described admissions for children aged 5-11 years to the main hospital in Tonga from January 2009 to December 2013. Rates with 95% confidence intervals (CI) were compared using rate ratios (RR). RESULTS: There were 1,816 admissions. The average annual admission rate was 20.2/1,000 (95% CI 19.3-21.1). Hospital admission rates were higher in younger than older children (5-7 versus 8-11 years, RR=1.28, 95% CI 1.18-1.41) and in boys than girls (RR=1.52, 95% CI 1.38-1.68). Injury and poisoning (28%), non-respiratory infectious diseases (19%), respiratory conditions (16%), abdominal/surgical conditions (13%) and dental (9%) were the most frequent admission reasons. A larger proportion of younger versus older children were hospitalised for dental (16% vs 1%, P<0.001) or respiratory conditions (18% vs 14%, P=0.02). A larger proportion of older children were hospitalised for abdominal/surgical conditions (15% vs 11%, P=0.008), other infectious diseases (21% vs 17%, P=0.04), other conditions (10% vs 6%, P<0.001) and cardiac conditions (2% vs 1%, P<0.001). CONCLUSIONS: In children 5-11 years in Tonga, 85% of admissions were for five groups of conditions. These data inform priority areas for healthcare spending and enable comparisons over time and between different Pacific countries.

The combination of bed sharing and maternal smoking leads to a greatly increased risk of sudden unexpected death in infancy: the New Zealand SUDI Nationwide Case Control Study.

BACKGROUND: Despite a major reduction in overall infant mortality, sudden unexpected death in infancy (SUDI) continues to be of concern in New Zealand, as the rate is high by international standards, and is even higher in indigenous Maori. AIM: To identify modifiable risk factors for SUDI. METHODS: A three-year (1 March 2012-28 February 2015) nationwide case-control study was conducted in New Zealand. RESULTS: There were 137 SUDI cases, giving a SUDI mortality rate of 0.76/1,000 live births. The rate for Maori was 1.41/1,000, Pacific 1.01/1,000 and non-Maori non-Pacific (predominantly European) 0.50/1,000. The parent(s) of 97% of the SUDI cases were interviewed. Six hundred and forty-nine controls were selected and 258 (40%) were interviewed. The two major risk factors for SUDI were: maternal smoking in pregnancy (adjusted OR=6.01, 95% CI=2.97, 12.15) and bed sharing (aOR=4.96, 95% CI=2.55, 9.64). There was a significant interaction (p=0.002) between bed sharing and antenatal maternal smoking. Infants exposed to both risk factors had a markedly increased risk of SUDI (aOR=32.8, 95% CI=11.2, 95.8) compared with infants not exposed to either risk factor. Infants not sharing the parental bedroom were also at increased risk of SUDI (aOR=2.77, 95% CI=1.45, 5.30). Just 21 cases over the three-year study were not exposed to smoking in pregnancy, bed sharing or front or side sleeping position. CONCLUSIONS: This study has shown that many of the risk factors that were identified in the original New Zealand Cot Death Study (1987-1989) are still relevant today. The combination of maternal smoking in pregnancy and bed sharing is extremely hazardous for infants. Furthermore, our findings indicate that the SUDI prevention messages are still applicable today and should be reinforced. SUDI mortality could be reduced to just seven p.a. in New Zealand (approximately one in 10,000 live births).

Perinatal Risk and Protective Factors for Pediatric Abusive Head Trauma: A Multicenter Case-Control Study.

OBJECTIVE: To estimate associations between factors recorded in pregnancy and the first week of life and subsequent abusive head trauma. STUDY DESIGN: Multicenter, retrospective case-control study of perinatal records from 142 cases of abusive head trauma and 550 controls, matched by date and hospital of birth from 1991 to 2010. Multiple logistic regression assessed the relationship between perinatal exposures and abusive head trauma. RESULTS: The risk of abusive head trauma decreased with increasing maternal age (OR, 0.91 per year; 95% CI 0.85-0.97) and increasing gestational age at birth (OR 0.79 per week; 95% CI 0.69-0.91). Mothers of cases were more likely to be Maori (OR 4.61; 95% CI 1.98-10.78), to be single (OR 5.10; 95% CI 1.83-14.23), have recorded social concerns (OR 4.29; 95% CI 1.32-13.91), and have missing data for antenatal care, partner status, social concerns, and substance abuse (OR 13.53; 95% CI 2.39-76.47). Case mothers were more likely not to take supplements in pregnancy (OR 3.53; 95% CI 1.30-9.54), to have membrane rupture longer than 48 hours before delivery (OR 13.01; 95% CI 2.84-59.68), and to formula feed (OR for mixed breast and formula feeding 6.06; 95% CI 2.39-15.36) before postnatal discharge (median 3 days). CONCLUSIONS: Factors associated with subsequent abusive head trauma can be identified from routine perinatal records. Targeted interventions initiated perinatally could possibly prevent some cases of abusive head trauma. However, any plans for targeted prevention strategies should consider not only those with identified risk factors but also those for which data are missing.

First Presentation Acute Rheumatic Fever is Preventable in a Community Setting: A School-based Intervention.

BACKGROUND: Robust evidence is lacking for community initiatives to prevent first presentation acute rheumatic fever (ARF) by group A streptococcal (GAS) pharyngitis treatment. METHODS: We measured the effect of introducing a sore throat clinic program on first presentation ARF into 61-year 1-8 schools with students 5-13 years of age (population ≈25,000) in Auckland, New Zealand. The study period was 2010-2016. A generalized linear mixed model investigated ARF rate changes before and after the staggered introduction of school clinics. Nurses and lay workers treated culture-proven GAS sore throats (including siblings) with 10 days of amoxicillin. ARF cases were identified from a population-based secondary prophylaxis register. Annual pharyngeal GAS prevalence was assessed in a subset. RESULTS: ARF rates in 5-13 year olds dropped from 88 [95% confidence interval (CI): 79-111] per 100,000 preclinics to 37 (95% CI: 15-83) per 100,000 after 2 years of clinic availability, a 58% reduction. No change in rate was demonstrated before the introduction of clinics [P = 0.88; incidence risk ratio for a 1-year change: 0.98 (95% CI: 0.63-1.52)], but there was a significant decrease of first presentation ARF rates with time after the introduction of the sore throat program [P = 0.008; incidence risk ratio: 0.61 (95% CI: 0.43-0.88)]. Pharyngeal GAS cross-sectional prevalence fell from 22.4% (16.5-30.5) preintervention to 11.9% (8.6-16.5) and 11.4% (8.2-15.7) 1 or 2 years later (P = 0.005). CONCLUSIONS: ARF declined significantly after school-based GAS pharyngitis management using oral amoxicillin paralleled by a decline in pharyngeal GAS prevalence.

Pacific Peoples, Violence, and the Power and Control Wheel.

This qualitative project was the first to study values and practices about sexual assault among migrant communities from the Cook Islands, Fiji, Niue, Samoa, Tokelau, Tonga, and Tuvalu in New Zealand. It aimed to identify customs, beliefs, and practices among these ethnic groups that were protective and preventive factors against sexual violence. Researchers were ethnically matched with 78 participants from the seven ethnic communities, and conducted individual interviews and one female focus group using protocols that were culturally appropriate for each ethnic group. Interviews were thematically analyzed. The study identified the brother-sister covenant and the sanctity of women as strong protective and preventive factors against sexual violence, expressed differently in each culture. Most participants viewed sexual violence as involving their extended families, village, and church communities, rather than solely the individuals concerned. However, the communal values and practices of these seven Pacific cultures raise questions about the individualistic assumptions and the meaning of violence underlying the Power and Control Wheel and the Duluth Model of domestic violence. It also raises questions about how such an individualized model can help services effectively support women in these collective societies who are experiencing violence, and how it can contribute to Pacific community prevention of violence. This study is therefore relevant to countries with significant populations of Pacific peoples and other collective cultures.