Development of a multidimensional culturally and socially inclusive measure of factors that support resilience: Child Resilience Questionnaire-Child report (CRQ-C)-a community-based participatory research and psychometric testing study in Australia.

OBJECTIVE: Development and testing of a comprehensive and social and culturally inclusive child-report measure of resilience factors supporting positive outcomes in the face of adversity. DESIGN: The measure is based on a socioecological model of resilience and was developed and revised using community-based participatory research methods with Aboriginal and refugee background communities. Pilot testing and validation of the child-report version (Child Resilience Questionnaire-Child report (CRQ- C)) is described in this paper. SETTING: Australia. PARTICIPANTS: Children aged 7-12 years from culturally and socially diverse backgrounds completed the CRQ- C in the pilot (n=387) and validation study (n=775). Families recruited via hospital clinics, Aboriginal and refugee background communities and nested follow-up of participants in an existing cohort study. ANALYSIS: The factor structure and construct validity of CRQ-C scales were assessed using exploratory and confirmatory factor analyses. Preliminary assessment of criterion validity was conducted usinghe Strengths and Difficulties Questionnaire (SDQ). Internal consistency of final scales was assessed using Cronbach's alpha. RESULTS: Conceptually developed CRQ-C was over inclusive of resilience factors and items. Exploratory factor analyses and confirmatory factor analyses supported 10 subscales reflecting personal resilience factors (positive self/future, managing emotions) and connectedness to family, school and culture. Excellent scale reliability (α=0.7-0.9) for all but one scale (Friends, α=0.6). Significant negative correlation between CRQ-C and SDQ total difficulty score supporting criterion validity (rs=-0.317, p<0.001). CONCLUSION: The CRQ-C is a new culturally and socially inclusive self-report measure of resilience factors in childhood, with demonstrated content, construct and scale reliability. Further testing of criterion validity required. Availability of child and parent report CRQ supports broad applications in clinical, research and intervention work. Socially inclusive and culturally appropriate tools are fundamental to create the evidence needed to assess and guide intervention efforts.

Development, acceptability and construct validity of the Aboriginal Women's Experiences of Partner Violence Scale (AEPVS): a co-designed, multiphase study nested within an Australian Aboriginal and Torres Strait Islander birth cohort.

OBJECTIVE: Few studies employ culturally safe approaches to understanding Indigenous women's experiences of intimate partner violence (IPV). The aim of this study was to develop a brief, culturally safe, self-report measure of Aboriginal and Torres Strait Islander women's experiences of different types of IPV. DESIGN: Multistage process to select, adapt and test a modified version of the Australian Composite Abuse Scale using community discussion groups and pretesting. Revised draft measure tested in Wave 2 follow-up of an existing cohort of Aboriginal families. Psychometric testing and revision included assessment of the factor structure, construct validity, scale reliability and acceptability to create the Aboriginal Women's Experiences of Partner Violence Scale (AEPVS). SETTING: South Australia, Australia. PARTICIPANTS: 14 Aboriginal women participated in discussion groups, 58 women participated in pretesting of the draft version of the AEPVS and 216 women participating in the Aboriginal Families Study completed the revised draft version of the adapted measure. RESULTS: The initial version of the AEPVS based on item review and adaptation by the study's Aboriginal Advisory Group comprised 31 items measuring physical, emotional and financial IPV. After feedback from community discussion groups and two rounds of testing, the 18-item AEPVS consists of three subscales representing physical, emotional and financial IPV. All subscales had excellent construct validity and internal consistency. The AEPVS had high acceptability among Aboriginal women participating in the Aboriginal Families Study. CONCLUSIONS: The AEPVS is the first co-designed, multidimensional measure of Aboriginal women's experience of physical, emotional and financial IPV. The measure demonstrated cultural acceptability and construct validity within the setting of an Aboriginal-led, community-based research project. Validation in other settings (eg, primary care) and populations (eg, other Indigenous populations) will need to incorporate processes for community governance and tailoring of research processes to local community contexts.

Development and validation of a multidimensional, culturally and socially inclusive Child Resilience Questionnaire (parent/caregiver report) to measure factors that support resilience: a community-based participatory research and psychometric testing study in Australia.

OBJECTIVE: Develop a comprehensive socially inclusive measure to assess child resilience factors. DESIGN: A socioecological model of resilience, community-based participatory research methods and two rounds of psychometric testing created the Child Resilience Questionnaire (parent/caregiver report, child report, school report). The parent/caregiver report (CRQ-P/C) is the focus of this paper. SETTING: Australia. PARTICIPANTS: Culturally and socially diverse parents/caregivers of children aged 5-12 years completed the CRQ-P/C in the pilot (n=489) and validation study (n=1114). Recruitment via a large tertiary hospital's outpatient clinics, Aboriginal and refugee background communities (Aboriginal and bicultural researchers networks) and nested follow-up of mothers in a pregnancy cohort and a cohort of Aboriginal families. ANALYSIS: Exploratory and confirmatory factor analyses conducted to assess the structure and construct validity of CRQ-P/C subscales. Cronbach's alpha used to assess internal consistency of subscales. Criterion validity assessed with the Strengths and Difficulties Questionnaire (SDQ) parent report. RESULTS: Conceptually developed CRQ comprised 169 items in 19 subscales across five socioecological domains (self, family, friends, school and community). Two rounds of psychometric revision and community consultations created a CRQ-P/C with 43 items in 11 scales: self (positive self, positive future, managing emotions), family (connectedness, guidance, basic needs), school (teacher support, engagement, friends) and culture (connectedness, language). Excellent scale reliability (α=0.7-0.9), except basic needs scale (α=0.61) (where a highly endorsed item was retained for conceptual integrity). Criterion validity was supported: scales had low to moderate negative correlations with SDQ total difficulty score (Rs= -0.2/-0.5. p<0.001); children with emotion/behavioural difficulties had lower CRQ-P/C scores (ß=-14.5, 95% CI -17.5 to -11.6, adjusted for gender). CONCLUSION: The CRQ-P/C is a new multidomain measure of factors supporting resilience in children. It has good psychometric properties and will have broad applications in clinical, educational and research settings. The tool also adds to the few culturally competent measures relevant to Aboriginal and refugee background communities.

Using Participatory Methods to Engage Diverse Families in Research about Resilience in Middle Childhood.

BACKGROUND: Resilience entails drawing on resources to navigate adversity; few measures exist to explore how children cope with adversity in varying cultural contexts. PURPOSE: We aimed to develop a socially-inclusive measure of child resilience by (1) co-designing methods to engage diverse families, and (2) identifying resilience factors. METHODS: We used a community-based participatory research (CBPR) approach to recruit Aboriginal families, refugee families, and families from hospital outpatient clinics. To triangulate findings and codesign methods, we held discussion groups with 21 service providers. Codesigned group-based visual methods were employed in discussion groups with 97 parents and 106 children (5-12 years). FINDINGS: Participants identified culturally-meaningful resilience factors such as loving family, speaking their home language (for families of Non-English speaking backgrounds). We discuss differences and commonalities across participant groups. CONCLUSION: Co-designing research that is both rigorous and inclusive is critical for gleaning culturally-meaningful data from diverse families.

Health care experiences and birth outcomes: Results of an Aboriginal birth cohort.

OBJECTIVE: The aim of this study was to investigate the relationship between perceived discrimination in perinatal care and birth outcomes of women giving birth to an Aboriginal baby in South Australia using methods designed to respect Aboriginal culture and communities. DESIGN AND SETTING: Population-based study of women giving birth to Aboriginal infants in South Australia, July 2011-June 2013. Women completed a structured questionnaire with an Aboriginal researcher. Study measures include: standardised measure of perceived discrimination in perinatal care; maternal smoking, cannabis use and exposure to stressful events and social health issues; infant birthweight and gestation. PARTICIPANTS: 344 women (mean age 25, range 15-43 years) living in urban, regional and remote areas of South Australia. RESULTS: Half of women (51%) perceived that they had experienced discrimination or unfair treatment by hospitals or health services providing care during pregnancy and soon after childbirth. Women experiencing three or more stressful events or social health issues were more likely to perceive that care was discriminatory or unfair. Aboriginal women who perceived that they had experienced discrimination in perinatal care were more likely to have a baby with a low birthweight (Adj Odds Ratio 1.9, 95% CI 1.0-3.8) or small for gestational age (Adj Odds Ratio 1.9, 95% CI 1.0-3.5), adjusting for parity, smoking and cannabis use. CONCLUSIONS: The study provides evidence of the 'inverse care law'. Aboriginal women most at risk of poor infant health outcomes were the least likely to perceive that they received care well matched to their needs. Building stronger evidence about what works to create cultural safety in perinatal health care is an urgent priority.

Community engagement in the Aboriginal Families Study: Strategies to promote participation.

BACKGROUND: Aboriginal women and families are under-represented in Australian research on pregnancy and childbirth. The Aboriginal Families Study aimed to investigate the views and experiences of a representative sample of women giving birth to an Aboriginal baby in South Australia between July 2011 and June 2013, using methods designed to respect Aboriginal culture and communities. METHODS: A team of 12 Aboriginal researchers facilitated community engagement and recruitment of Aboriginal and non-Aboriginal mothers of Aboriginal infants in urban, regional and remote areas of South Australia over a two-year period. RESULTS: A total of 344 women took part, around a quarter of all Aboriginal women giving birth in South Australia in the study period (39% urban, 35% regional and 25% from remote areas). Participants were representative in relation to maternal age (mean age of 25 years, range=15-43 years). Over half of women (56%) first heard about the study via a member of the fieldwork team making contact with them through community connections. Other major sources of recruitment were: Aboriginal health services/programs (20%) and public maternity hospitals (16%). Almost all of the women (95%) recruited via community networks of the fieldwork team completed the questionnaire. In contrast, 51% of women recruited via public hospitals completed the questionnaire (odds ratio=0.1, 95% confidence interval 0.0-0.1, p<0.001). CONCLUSIONS: Aboriginal researchers' community knowledge and leadership is critical to the conduct of successful Aboriginal health research. High levels of participation in research by 'harder to reach' populations are achievable when researchers take time to build relationships and work in partnership with communities.

Initiation and duration of breastfeeding of Aboriginal infants in South Australia.

BACKGROUND: Benefits of breastfeeding are well-established. Few studies have examined initiation and duration of breastfeeding of Aboriginal infants. METHODS: Population-based study of women giving birth to an Aboriginal infant in South Australia, July 2011-June 2013. FINDINGS: 344 women took part. Participants were representative in relation to maternal age, infant birthweight and gestation. Eighty-six percent initiated breastfeeding, declining to 54% at 12 weeks postpartum. Women living in remote areas were more likely to be breastfeeding at 12 weeks than women living in Adelaide (Odds Ratio=2.6, 95% Confidence Interval 1.5-4.7). Two-thirds of women (67%) attending standard public antenatal care in regional areas and 61% attending regional Aboriginal Family Birthing Program Services were breastfeeding at 12 weeks, compared to one third of women (36%) attending standard metropolitan public antenatal care and 49% of women attending metropolitan Aboriginal Family Birthing Program Services. Less than half of women (45%) described their postnatal care as 'very good', and 40% were not always able to access support with infant feeding when needed. The most common reasons for switching to formula before 6 weeks were: low milk supply/baby not gaining weight, mastitis/sore breasts or other feeding problems. Mothers also identified their own health as a factor. CONCLUSION: While the findings must be treated with caution due to small numbers, they suggest benefits for women attending Aboriginal Family Birthing Program services in the urban environment where rates of initiation and continued breastfeeding are lowest. Provision of culturally appropriate support to Aboriginal women during and after pregnancy is key to improving outcomes.

'Partnerships are crucial': an evaluation of the Aboriginal Family Birthing Program in South Australia.

OBJECTIVES: To evaluate implementation and outcomes of the Aboriginal Family Birthing Program (AFBP), which provides culturally competent antenatal, intrapartum and early postnatal care for Aboriginal families across South Australia (SA). METHODS: Analysis of births to Aboriginal women in SA 2010-2012; interviews with health professionals and AFBP clients. RESULTS: Around a third of all Aboriginal women giving birth in SA 2010-2012 (n=486) attended AFBP services. AFBP women were more likely to be more socially disadvantaged, have poorer pregnancy health and to have inadequate numbers of antenatal visits than Aboriginal women attending other services. Even with greater social disadvantage and higher clinical complexity, pregnancy outcomes were similar for AFBP and other Aboriginal women. Interviews with 107 health professionals (including 20 Aboriginal Maternal and Infant Care (AMIC) workers) indicated differing levels of commitment to the model, with some lack of clarity about AMIC workers and midwives roles. Interviews with 20 AFBP clients showed they highly valued care from another Aboriginal woman. CONCLUSIONS: Despite challenges, the AFBP reaches out to women with the greatest need, providing culturally appropriate, effective care through partnerships. Implications for Public Health: Programs like the AFBP need to be expanded and supported to improve maternal and child health outcomes for Aboriginal families.

Primary health care for Aboriginal women and children in the year after birth: findings from a population-based study in South Australia.

OBJECTIVE: To investigate the extent to which Aboriginal women access primary care for themselves and their infant in the year after childbirth. METHOD: Cross sectional population-based survey of women giving birth to Aboriginal babies in South Australia between July 2011 and June 2013. RESULTS: A total of 344 women took part in the study 4-9 months after giving birth. The majority had seen a primary health care practitioner since the birth: 86% had seen a Child and Family Health Service (CaFHS) nurse, 81% a general practitioner (GP), and 61% an Aboriginal health worker (AHW). Women living in remote areas were more likely to have seen primary care practitioners than women living in Adelaide (GP: OR 2.3, 95% CI 1.0-5.2; CaFHS: OR 2.4, 95% CI 1.0-5.8; AHW: OR 5.2, 95% CI 2.8-9.8). Around 16% of women with gestational diabetes and 10% with hypertension had not seen a GP since the birth, and 24% of women who had a low birthweight infant had not seen a CaFHS nurse. CONCLUSIONS: Despite high prevalence of maternal and infant morbidity, a sizeable minority of women did not access primary care practitioners postpartum. Implications for public health: Stronger efforts are needed to ensure Aboriginal women and families receive appropriate postnatal follow-up.

Stressful events, social health issues and psychological distress in Aboriginal women having a baby in South Australia: implications for antenatal care.

BACKGROUND: Around 6% of births in Australia are to Aboriginal and Torres Strait Islander families. Aboriginal and Torres Strait Islander women are 2-3 times more likely to experience adverse maternal and perinatal outcomes than non-Aboriginal women in Australia. METHODS: Population-based study of mothers of Aboriginal babies born in South Australia, July 2011 to June 2013. Mothers completed a structured questionnaire at a mean of 7 months postpartum. The questionnaire included measures of stressful events and social health issues during pregnancy and maternal psychological distress assessed using the Kessler-5 scale. RESULTS: Three hundred forty-four women took part in the study, with a mean age of 25 years (range 15-43). Over half (56.1%) experienced three or more social health issues during pregnancy; one in four (27%) experienced 5-12 issues. The six most commonly reported issues were: being upset by family arguments (55%), housing problems (43%), family member/friend passing away (41%), being scared by others people's behavior (31%), being pestered for money (31%) and having to leave home because of family arguments (27%). More than a third of women reporting three or more social health issues in pregnancy experienced high/very high postpartum psychological distress (35.6% versus 11.1% of women reporting no issues in pregnancy, Adjusted Odds Ratio = 5.4, 95% confidence interval 1.9-14.9). CONCLUSIONS: The findings highlight unacceptably high rates of social health issues affecting Aboriginal women and families during pregnancy and high levels of associated postpartum psychological distress. In order to improve Aboriginal maternal and child health outcomes, there is an urgent need to combine high quality clinical care with a public health approach that gives priority to addressing modifiable social risk factors for poor health outcomes.

Use of cannabis during pregnancy and birth outcomes in an Aboriginal birth cohort: a cross-sectional, population-based study.

OBJECTIVES: Indigenous women continue to experience rates of stillbirth, preterm birth and low birth weight, two to three times higher than other women in high-income countries. The reasons for disparities are complex and multifactorial. We aimed to assess the extent to which adverse birth outcomes are associated with maternal cannabis use and exposure to stressful events and social health issues during pregnancy. DESIGN/SETTING: Cross-sectional, population-based survey of women giving birth to Aboriginal babies in South Australia, July 2011-June 2013. Data include: maternal cannabis use, exposure to stressful events/social health issues, infant birth weight and gestation. PARTICIPANTS: 344 eligible women with a mean age of 25 years (range 15-43 years), enrolled in the study. Participants were representative in relation to maternal age, infant birth weight and gestation. RESULTS: 1 in 5 women (20.5%) used cannabis during pregnancy, and 52% smoked cigarettes. Compared with mothers not using cannabis or cigarettes, mothers using cannabis had babies on average 565 g lighter (95% CI -762 to -367), and were more likely to have infants with a low birth weight (OR=6.5, 95% CI 3.0 to 14.3), and small for gestational age (OR=3.8, 95% CI 1.9 to 7.6). Controlling for education and other social characteristics, including stressful events/social health issues did not alter the conclusion that mothers using cannabis experience a higher risk of negative birth outcomes (adjusted OR for odds of low birth weight 3.9, 95% CI 1.4 to 11.2). CONCLUSIONS: The findings provide a compelling case for stronger efforts to address the clustering of risk for adverse outcomes in Aboriginal and Torres Strait Islander communities, and point to the need for antenatal care to address broader social determinants of adverse perinatal outcomes. Integrated responses--collaboratively developed with Aboriginal communities and organisations--that focus on constellations of risk factors, and a holistic approach to addressing social determinants of adverse birth outcomes, are required.

Improving Access to Antenatal Care for Aboriginal Women in South Australia: Evidence from a Population-Based Study.

INTRODUCTION: Aboriginal and Torres Strait Islander women are two to three times more likely to experience adverse maternal and perinatal outcomes than non-Aboriginal women in Australia. Persisting health inequalities are at least in part explained by late and/or inadequate access to antenatal care. METHODS: This study draws on data collected in a population-based study of 344 women giving birth to an Aboriginal infant between July 2011 and June 2013 in South Australia to investigate factors associated with engagement in antenatal care. RESULTS: About 79.8 percent of mothers accessed antenatal care in the first trimester of pregnancy, and 90 percent attended five or more antenatal visits. Compared with women attending mainstream regional services, women attending regional Aboriginal Family Birthing Program services were more likely to access antenatal care in the first trimester (Adj OR 2.5 [1.0-6.3]) and markedly more likely to attend a minimum of five visits (Adj OR 4.3 [1.2-15.1]). Women attending metropolitan Aboriginal Family Birthing Program services were also more likely to attend a minimum of five visits (Adj OR 12.2 [1.8-80.8]) compared with women attending mainstream regional services. Women who smoked during pregnancy were less likely to attend a visit in the first trimester and had fewer visits. CONCLUSIONS: Scaling up of Aboriginal Family Birthing Program Services in urban and regional areas of South Australia has increased access to antenatal care for Aboriginal families. The involvement of Aboriginal Maternal Infant Care workers, provision of transport for women to get to services, and outreach have been critical to the success of this program.

Improving Aboriginal women's experiences of antenatal care: findings from the Aboriginal families study in South Australia.

BACKGROUND: Aboriginal and Torres Strait Islander families experience markedly worse maternal and child health outcomes than non-Aboriginal families. The objective of this study was to investigate the experiences of women attending Aboriginal Family Birthing Program services in South Australia compared with women attending mainstream public antenatal care. METHOD: Population-based survey of mothers of Aboriginal babies giving birth in urban, regional, and remote areas of South Australia between July 2011 and June 2013. RESULTS: A total of 344 women took part in the study around 4-9 months after giving birth; 93 percent were Aboriginal and/or Torres Strait Islanders, and 7 percent were non-Aboriginal mothers of Aboriginal babies. Of these, 39 percent of women lived in a major city, 36 percent in inner or outer regional areas, and 25 percent in remote areas of South Australia. Compared with women attending mainstream public antenatal care, women attending metropolitan and regional Aboriginal Family Birthing Program services had a higher likelihood of reporting positive experiences of pregnancy care (adjOR 3.4 [95% CI 1.6-7.0] and adjOR 2.4 [95% CI 1.4-4.3], respectively). Women attending Aboriginal Health Services were also more likely to report positive experiences of care (adjOR 3.5 [95% CI 1.3-9.4]). CONCLUSIONS: In the urban, regional, and remote areas where the Aboriginal Family Birthing Program has been implemented, the program has expanded access to culturally responsive antenatal care for Aboriginal women and families. The positive experiences reported by many women using the program have the potential to translate into improved outcomes for Aboriginal families.

Aboriginal Families Study: a population-based study keeping community and policy goals in mind right from the start.

BACKGROUND: Australian Aboriginal and Torres Strait Islander women are between two to five times more likely to die in childbirth than non-Aboriginal women, and two to three times more likely to have a low birthweight infant. Babies with a low birthweight are more likely to have chronic health problems in adult life. Currently, there is limited research evidence regarding effective interventions to inform new initiatives to strengthen antenatal care for Aboriginal families. METHOD/DESIGN: The Aboriginal Families Study is a cross sectional population-based study investigating the views and experiences of Aboriginal and non-Aboriginal women having an Aboriginal baby in the state of South Australia over a 2-year period. The primary aims are to compare the experiences and views of women attending standard models of antenatal care with those accessing care via Aboriginal Family Birthing Program services which include Aboriginal Maternal Infant Care (AMIC) Workers as members of the clinical team; to assess factors associated with early and continuing engagement with antenatal care; and to use the information to inform strengthening of services for Aboriginal families. Women living in urban, regional and remote areas of South Australia have been invited to take part in the study by completing a structured interview or, if preferred, a self-administered questionnaire, when their baby is between 4-12 months old. DISCUSSION: Having a baby is an important life event in all families and in all cultures. How supported women feel during pregnancy, how women and families are welcomed by services, how safe they feel coming in to hospitals to give birth, and what happens to families during a hospital stay and in the early months after the birth of a new baby are important social determinants of maternal, newborn and child health outcomes. The Aboriginal Families Study builds on consultation with Aboriginal communities across South Australia. The project has been implemented with guidance from an Aboriginal Advisory Group keeping community and policy goals in mind right from the start. The results of the study will provide a unique resource to inform quality improvement and strengthening of services for Aboriginal families.

Sharing stories: indigenous alcohol and other drug workers' well-being, stress and burnout.

BACKGROUND: Indigenous alcohol and other drug (AOD) workers' roles are often exhausting, poorly paid and under-recognised. There has been relatively little examination of work-related stressors on their health and well-being. This national study identified Indigenous AOD workers' experiences and perspectives on well-being, stress and burnout along with strategies to improve worker well-being. METHODS: Focus groups were conducted with 121 participants (70 Indigenous, 20 non-Indigenous, 31 unspecified) from metropolitan, rural and remote locations around Australia, selected via a purposive sampling strategy. Audio files and interview notes were analysed to identify key themes. RESULTS: Main themes identified included excessive workloads, extensive demands and expectations, workers' proximity to communities, loss and grief issues, lack of recognition, inadequate rewards, stigma and racism, and Indigenous ways of working. Stressors were compounded by workers' complex personal circumstances, profound levels of loss and grief, and lack of culturally safe working environments. DISCUSSION AND CONCLUSION: Indigenous workers' stress was exacerbated by close links and responsibilities to their communities and a 'dual accountability', being constantly on call, playing multiple roles, complex personal and professional lives, and needing to interact with multiple agencies. Many Indigenous AOD workers had developed mechanisms to deal with work-related pressures and received valued support from their communities. The study identified the importance of workforce strategies to improve Indigenous workers' well-being and reduce stress, including: mutual support networks, training in assertiveness and boundary setting, workloads that take account of Indigenous ways of working, adequate remuneration, supervision and mentorship, and cultural sensitivity training for non-Indigenous workers.