Evaluation of the Pilbara Strong Women, Strong Baby, Strong Culture Program 2007

Transcription

1 Evaluation of the Pilbara Strong Women, Strong Baby, Strong Culture Program 2007 Prepared by the Kulunga Research Network Telethon Institute for Child Health Research

2 Report prepared by Dr Clair Scrine and Mr Daniel McAullay December 2007 Kulunga Research Network Telethon Institute for Child Health Research PO Box 855 WEST PERTH WA 6872 T: F: E: enquire-kulunga@ichr.uwa.edu.au W:

3 EXECUTIVE SUMMARY This evaluation sought to measure the effectiveness and impact of the Strong Women, Strong Babies, Strong Culture (SWSBSC) program in different sites across the Pilbara, and to identify opportunities to enhance the provision of the program. Both qualitative and quantitative data was collected and analysed to determine to what extent and how the program has impacted on the health status of pregnant Aboriginal women and the ensuing impact of this on a number of perinatal health outcomes. The evaluation also sought to investigate the antenatal, postnatal and child health care experiences of those women linked to the program. The evaluation found that there is widespread support for the program and that the continuity of care and commitment of staff involved in the delivery of the program is significant. However, there are also a range of issues that continue to negatively impact on the provision of the program with the evaluation identifying a range of system-level changes required to improve the provision and impact of the SWSBSC program. In particular, the evaluation demonstrates weaknesses in the current management and coordination of the program and the collection of data by program providers. These are limiting the provision of a standardised program across the sites and the adequate documentation of any impact the program is having on the health outcomes of the participants. As a result, this evaluation is somewhat limited in its ability to accurately assess the links between the SWSBSC program and the perinatal health outcomes of its participants. Opportunities to improve the program and build the capacity of its staff include: Implementing consistent data collection and reporting requirements across the program; Increased training for all staff on a range of topics including data collection and management, antenatal screening, targeted antenatal health promotion; Clearer definition of the roles and responsibilities of the Program Coordinator to the Pilbara based program staff and to the relevant management in St John of God Health Care; Increased communication and collaboration between the program staff across the Pilbara and with other community heath providers; and Increased resources.

4 RECOMMENDATIONS That processes be established to ensure regular communication between the Program Coordinator with all Strong Women Workers and relevant agencies and service providers across the Pilbara. That the role of the Program Coordinator including their reporting requirements to St John of God Healthcare, responsibilities to program staff and role with other stakeholders be more clearly defined and monitored. That there is a commitment to supporting the ongoing training needs, capacity development and other workplace requirements of the Strong women workers across the Pilbara. That better communication is established between all Pilbara based SWSBSC program staff. That the collection of consistent, uniform, data on Aboriginal clients in the SWSBSC program is initiated immediately to enable ongoing evaluation and monitoring of the changes occurring as a result of the work of the program. 4

5 TABLE OF CONTENTS Executive Summary 3 Recommendations 4 1. Introduction 7 Background 7 The importance of maternal and child health 7 2. The SWSBSC Program 9 Background 9 Program Aims 9 Role of Strong Women Workers 10 Maps of Pilbara 10 SWSBSC Pilbara 11 Site Demographics The SWSBSC Program Evaluation 15 Objective 15 Methodology 15 Data Limitations 15 Quantitative Data 15 Maternal and child health indicators SWSBSC Program Data 15 Data Analysis 19 Limitations Qualitative data 0 Approach 1 Focus groups 21 Key informant interviews 21 Limitations 22 Roebourne Issues 24 Analysis 24 Hedland 6 Issues 26 Analysis 26 Yandeyarra 8 Issues 28 Analysis 28 5

6 4. Recommendations & Future Directions 29 Enhancing the SWSBSC program Succession planning 29 Program consistency 29 Communication 29 Staff Training 29 Transport 30 Links between services 30 Role of program coordinator 30 Role of SJoG 30 Antenatal care information 30 Future data collection Conclusion 32 Acronyms and Abbreviations 34 Key Stakeholders 34 References 34 Appendices A: Manual, Strong Women Workers, Pilbara. 9 6

7 1. INTRODUCTION The Kulunga Research Network (Kulunga) was engaged by the St John of God Health Care to undertake an evaluation of the Pilbara based Strong Women, Strong Babies, Strong Culture (SWSBSC) program. The evaluation is intended to assist the St John of God Health Care Service to measure the effectiveness and impact of the program in different communities and to identify opportunities to enhance the program. The Kulunga Research Network is the Aboriginal research arm of the Telethon Institute for Child Health Research (the Institute) and was established in Kulunga was a joint initiative between the Institute and the WA Aboriginal Community (through WA Aboriginal Community Controlled Health Organisations). The Institute is a world leader in conducting high quality maternal and child health research and has an extensive track record in effectively managing comprehensive research projects. All research undertaken by Kulunga is designed to support Aboriginal community interests and priorities and incorporates a set of research protocols and principles that aim to ensure genuine participation and engagement of Aboriginal people. The St John of God Health Care (SJoG) is a leading provider of health and community services, with hospitals, pathology and outreach services throughout Australia. It is the fourth largest private hospital provider in Australia. As a Catholic, not-for-profit group, St John of God Health Care returns all profits to the communities it serves. The SWSBSC program supports pregnant Aboriginal women to have healthy babies and currently operates in the North West of Western Australia including Derby, the Fitzroy Valley and in three sites across the Pilbara. The SWSBSC program is a major initiative within SJoG s Aboriginal Health Strategy and is consistent with the organisation s heritage of providing services to those most in need. Background It is well documented that Aboriginal people are the most disadvantaged group within Australia. High infant mortality rates, limited educational outcomes leading to limited employment opportunities, high levels of family violence, substance use and high incarceration rates are both symptomatic of and perpetuating the disadvantage experienced by many Aboriginal people. The significant health disadvantage of Aboriginal people is seen across all accepted indicators of health status. This disadvantage often begins very early with high incidences of poor maternal health and low birth weights, which have the potential to continue to play a direct role in the severity of Aboriginal people s health status and the impact of this on their social, emotional and cultural well being. The cycle of ill health among Aboriginal people has a devastating impact not only for the individual, but entire families and communities. The Importance Of Maternal And Child Health A healthy start to life is an important predictor of later health, wellbeing and development. Good maternal health leading to a full term pregnancy and the delivery of an infant that is of optimal weight and vigour is a desirable beginning to healthy development. Poor maternal health increases the vulnerability of the foetus and the child after birth with low birthweight infants more likely to have health problems later in life than infants of normal birthweight and more likely to develop chronic diseases in adult life. The disparities in the health outcomes of Aboriginal mothers and children are well documented. Morbidity and mortality are higher and life expectancy at birth is lower in the Aboriginal population. Pregnancy complications and diseases in pregnancy such as pre-eclampsia, diabetes and anaemia are all more common in Aboriginal populations. The prevalence of childhood disorders is also higher among Aboriginal children than non-aboriginal children. Recurring infections are the dominant illnesses faced by Aboriginal children. Some of these infections are also associated with the 7

8 occurrence of other acute and chronic illnesses through the life course. For example, recurring ear infection (e.g. otitis media) and recurring skin infection (e.g. pyoderma) are particularly burdensome with the latter in some Aboriginal communities being associated with the highest worldwide rates of acute rheumatic fever. These high levels of recurring infections are related to the broad spectrum of disadvantage that Aboriginal people experience. Poverty is a significant factor directly impacting on a mother s ability to access healthy food, adequate hygiene and health care. Similarly, poor living conditions, unhealthy lifestyle behaviours including smoking, substance use and poor nutrition are widely prevalent among Aboriginal communities and significantly influence the poor health status of pregnant women and their children. Mothers of Aboriginal children often have multiple risk factors that contribute to low birthweight and impaired growth of their babies. Among these are cigarette smoking, alcohol consumption and other drug use during pregnancy. Consuming alcohol at hazardous levels is associated with adverse perinatal outcomes such as foetal alcohol syndrome, alcohol withdrawal in the newborn and increased risk of perinatal mortality. While Aboriginal women are less likely to consume any alcohol than are other Australian women, those that do consume alcohol are more likely to do so at hazardous levels, particularly women of childbearing age. Another significant contributing factor to the high rates of complications and illness during pregnancy in the Aboriginal population is a reluctance to access and use existing health services, especially during the first trimester. An antenatal visit is defined as an intentional encounter between a pregnant woman and a midwife or doctor to assess and improve maternal and foetal well being throughout pregnancy and prior to labour. The traditional number of antenatal visits is approximately 14, based on early presentation and a schedule of four weekly visits until 28 weeks gestation, then fortnightly visits until 36 weeks gestation, followed by weekly visits until birth. This schedule does not always include additional visits required for new technologies such as routine foetal anomaly screening tests, antenatal classes, social needs assessment or postnatal planning. The rationale for the traditional schedule of antenatal visits is based on the theory that regular visits with predefined content enable midwives and doctors to detect conditions in mother and baby that may threaten their health. Conditions are then monitored or treated to ensure a safe delivery and better outcomes. The number, timing and content of antenatal visits should be structured to reflect the preferences of the mother, and to optimise accurate diagnosis and management of maternal and foetal complications. Based upon work of successful models of community-based antenatal care, encouraging women to present to the antenatal clinic at less than 12 weeks gestation and around 26, 32 and 38 weeks gestation could form the safe minimum number of antenatal visits for women of low obstetric risk. Emphasis on presenting at the antenatal clinic at particular times is important for the continued monitoring of maternal and foetal well being. Late presentation, sporadic presentation and noncompliance with treatment can result in less than optimal outcomes. Studies have shown that the level of primary care services a population receives is directly linked to their better health outcomes and that this is especially the case for low birth weights and infant mortality. While the health system alone is not the panacea for the levels of disadvantage experienced by Aboriginal people, equitable access to culturally secure and appropriate health care is essential to improving their health outcomes and health status. Evidence shows that services that are provided in community-based settings, especially those in community-controlled settings, have a higher capacity for an enabling model of care. Access to holistic, culturally appropriate services are essential elements of a primary health care approach and it is these important factors that underpin the Strong Women, Strong Babies, Strong Culture program. 8

9 2. THE STRONG WOMEN, STRONG BABIES, STRONG CULTURE PROGRAM Background Strong Women, Strong Babies, Strong Culture (NT) The Strong Women, Strong Babies, Strong Culture (SWSBSC) program began in the Northern Territory in early 1993 in response to the concerns of Indigenous women, nutritionists and doctors that babies were being born too small, not growing well and were often anaemic. The program was developed as a result of extensive studies conducted by Rae (1989) who examined the associations between birth weight and various antecedents using data that was routinely recorded in antenatal charts in two Top End communities in the Northern Territory. A major aim of the SWSBSC program was to increase infant birth weights and improved maternal weight status through earlier attendance for antenatal care. The program was designed to encourage Aboriginal women to visit clinics for their antenatal care at an early stage during their pregnancy. Through the involvement of senior Aboriginal women, the program sought to offer advice and support to younger women during their pregnancy and promote safer and healthier practices in a culturally appropriate and safe manner. Various evaluations of the impact of the SWSBSC program in the Northern Territory by Mackerras, Tursan d Espaignet and Fejo strongly suggest a link between the improved health status of those pregnant women participating in the program and a positive impact on the health of infants at birth. The evaluation of the Strong Women, Strong Babies, Strong Culture Program that was conducted by Mackerras in three communities in the Northern Territory between 1990 and 1995 revealed a statistically significant reduction in the prevalence of low birth weight babies following the commencement of the Strong Women, Strong Babies, Strong Culture Program. In the pilot communities, the mean birthweight rose from 2915g to 3086g, compared with a rise from 2947g to 3039g in the comparison (non-intervention) communities. The report concludes that it seems likely that the program contributed to this large improvement. However, a later follow up study published in 2003 found that no further significant increase in mean birth weight or reduction in low birth weight was observed in the intervention groups. Program Aims The aim of the SWSBSC program is to implement a bi-cultural, holistic health program to enhance the health of pregnant women, babies, young women and children. The specific goals of the program are to increase infant birth weights through earlier attendance for antenatal care and improved maternal weight status. Local community-based Aboriginal Women (Strong Women Workers) work with pregnant Indigenous women in a program that emphasises both traditional practices and clinical practice. Indigenous women deliver the program for Indigenous women. Strong Women Workers have specialised cultural knowledge related to their local community. If pregnant women need certain bush medicine or bush tucker this will be collected for them. Ideally, the community women work hand in hand with nutritionists, community based health workers, local schools and other relevant services and organisations in the community. The program is designed to utilise the different knowledge and skills of Indigenous people, community health, medical and nutritional professionals. The SWSBSC program focuses on five key areas of maternal, foetal and infant health: Improved nutrition during pregnancy through diet (including bush tucker) exercise and hygiene; Targeting potential dangers to pregnant women and the foetus poor weight gain, alcohol and tobacco use, diabetes, injury; Prevention and protection of mothers against these potential dangers through individual and community action using traditional values and customs combined with western clinical-based medical knowledge; 9

10 Sharing of information between Aboriginal women and community health nurses; and Sharing of knowledge from senior women of the community to younger women, especially teenage girls, so that the community can care for mothers of future generations. The program also emphasises the spiritual, physical and mental aspects of postnatal care, including breast care and infant feeding. Role Of Strong Women Workers To promote and improve the good health and well being of all pregnant women and their babies by working closely with the mothers and grandmothers within their communities; To increase the involvement and participation of cultural ceremonies and traditions for Aboriginal women including smoking ceremonies for the baby; Encourage families to support and care for the pregnant woman throughout her pregnancy; Increase and encourage the number of women presenting to the clinic for early antenatal care; Provision of culturally appropriate education and support to pregnant women within their communities; Share the SWSBSC story with pregnant women and young girls before pregnancy; Work with health staff at antenatal clinics; Increase pregnant women s knowledge about good nutrition, exercise and high risk factors that are associated with low birth weight babies including smoking, alcohol and drug taking during pregnancy; and Promote and encourage the safe delivery of babies ensuring a safe and healthy start to life. Attached at Appendix A is the current manual provided to Strong Women Workers in the Pilbara. Maps: Pilbara 10

11 SWSBSC Pilbara The SWSBSC program commenced in the Pilbara in 1999 in Yandeyarra and Tjalka Warra. Over time the program expanded to Jigalong, Roebourne, South and Port Hedland, Punmu and Newman. However, currently the program is only functioning with employed staff in Roebourne, Port Hedland and Yandeyarra. 11

12 Site Demographics Pilbara (Statistical Division) sq.kms [A Statistical Division (SD) is an Australian Standard Geographical Classification (ASGC) defined area which represents a large, general purpose, regional type geographic area. SDs consist of one or more Statistical Subdivisions and cover, in aggregate, the whole of Australia without gaps or overlaps.] In the 2006 Census, there were 41,001 persons usually resident in Pilbara (SD): 54.9% were males and 45.1% were females. Of the total population in Pilbara (Statistical Division) 13.7% were Indigenous persons. Table 1: AGE BY INDIGENOUS STATUS BY SEX - Pilbara Males Females Persons Age (years): 0-4 years years years years years years years years years years years years years years and over Total 2,881 2,752 5,633 Table 2: NUMBER OF CHILDREN EVER BORN BY AGE OF FEMALE BY INDIGENOUS STATUS - PILBARA SD None > 6 Not stated Total years years years years years > 65 years Total ,857 12

13 Roebourne Suburb [Suburb is a Census-specific area where Collection Districts are aggregated to approximate gazetted suburbs and localities.] In the 2006 Census, there were 920 persons usually resident in Roebourne 50.7% were males and 49.3% were females. Of the total population in Roebourne (Suburb) 63.5% were Indigenous persons there were 587 Indigenous persons in Roebourne comprising 63.5% of the total population of Roebourne (Suburb). Table 3: AGE BY INDIGENOUS STATUS BY SEX - ROEBOURNE SUBURB Males Females Persons 0-4 years years years years years years years years years years years years years > 65 years Total Roebourne Local Government Area [The Local Government Area (LGA) is a geographical area under the responsibility of an incorporated local government council, or an incorporated Indigenous government council. The LGA s in Australia collectively cover only a part of Australia. Their creation and delimitation is the responsibility of the respective state/territory governments, and are governed by the provisions of state/territory local government acts.] Table 4: NUMBER OF CHILDREN EVER BORN BY AGE OF FEMALE BY INDIGENOUS STATUS - ROEBOURNE LGA None > 6 Not Stated Total years years years years years > Total

14 Port Hedland [Indigenous Locations (ILOC) are single Collection Districts (CDs) or aggregates of CDs which have a population of at least 80 Indigenous persons.] In the 2006 Census (held on 8th August 2006) there were 1,594 Indigenous persons usually resident in Port Hedland (T) - Rem (Indigenous Location), 49.8% were Indigenous males and 50.2% were Indigenous females. Of the total population 13.6% were Indigenous persons. Table 5: AGE BY INDIGENOUS STATUS BY SEX PORT HEDLAND Males Females Persons 0-4 years years years years years years years years years years years years years > 65 years Total ,788 Table 6: NUMBER OF CHILDREN EVER BORN BY AGE OF FEMALE BY INDIGENOUS STATUS - PORT HEDLAND LGA None > 6 Not Stated Total years years years years years > Total Yandeyarra In the 2006 Census (held on 8th August 2006) there were 101 Indigenous persons usually resident in Yandeyarra (Indigenous Location), 54.5% were Indigenous males and 45.5% were Indigenous females. Of the total population 93.5% were Indigenous persons. Due to the small population size in Yandeyarra there is no detailed data available about the population. Cheeditha In the 2006 Census (held on 8th August 2006) there were 59 Indigenous persons usually resident in Cheeditha (Indigenous Location), 47.5% were Indigenous males and 52.5% were Indigenous females. Of the total population 100.0% were Indigenous persons.the aim of the evaluation was to assess what improvements in perinatal health (specifically birth weights and rates of pre-term births) might be linked to the impact of the SWSBSC program in communities in the Pilbara. 14

15 3. THE SWSBSC PROGRAM EVALUATION Objective The aim of the evaluation was to assess what improvements in perinatal health (specifically birth weights and rates of pre-term births) might be linked to the impact of the SWSBSC program in communities in the Pilbara. The evaluation also sought to better understand how the intervention works in different communities and the range of benefits it delivers physical, emotional and social. It also aimed to identify what improvements could be made to enhance the SWSBSC program and the health and wellbeing of participating women and their infants. The evaluation and recommendations are designed to act as a useful tool to achieve a greater understanding of the impact of the program and where resources might be directed. This report focuses on the following issues: Data collection & analysis; The health outcomes of the program s target group; Models of care; The SWSBSC teams; and The training and support within the program. Methodology The approach to the evaluation involved collating and analysing a set of quantitative and qualitative data to seek to identify how effective different initiatives and strategies within the SWSBSC program are with respect to improved infant birthweight, improved maternal health and other indicators of effective antenatal care. Data Limitations A key issue in the evaluation has been access to reliable quantitative data related to each of the indicators required to support the aims of the evaluation. At the time of the evaluation, there were many limitations to establishing an accurate data profile on perinatal health statistics across the Pilbara for those women participating in the SWSBSC program - due largely to a lack of collection of data across the services. Further, preliminary analysis suggests that the effects of the SWSBSC program on each of the outcome indicators are likely to be relatively small, and given the sample sizes involved, unlikely to achieve statistical significance. As a result, the evaluation is particularly reliant on qualitative data to support learning s from the program. QUANTITATIVE DATA Maternal and Child Health Indicators For children, indicators of poor health include perinatal mortality, infant mortality, and the proportion of infants born with low birth weights. Rates of low birth weights and pre-term babies born to Aboriginal women are high across Western Australia. Mothers of Aboriginal and Torres Strait Islander children often have multiple risk factors that contribute to low birth weight and pre-term babies and to the impaired growth of their babies. Birthweight is commonly used as a key indicator of the health status of the infant. Low birthweight is associated with a higher risk of a number of chronic diseases in adult life and as such, a person s life expectancy. Rates of tobacco smoking during pregnancy are considered as increasing the likelihood of low birth weight and poor health outcomes for the infant. SWSBSC Program data The data presented provides information on the births enrolled into the SWSBSC program for the years 2003 to These data were identified and collected from hospital records at the Port Hedland 15

16 Regional Hospital (PHRH) in The process involved the program coordinator and hospital staff retrospectively identifying mothers who participated on the program by their surnames (familiarity). Information collected included mothers usual residence (postcode), parity, birth weight, baby s head circumference and birth length. This data should be treated as limited and incomplete. Recall bias of the coordinator to accurately identify program participants would be the most important limitation of this data. The other limitation related to incompleteness in that these data only relate to PHRH births and do not account for births in other hospitals (for example, Perth and Karratha). Table 7 and Figure 1 indicate the number of babies born at the PHRH that were identified as being enrolled in the specific SWSBSC program sites. Table 7: NUMBER OF PROGRAM PARTICIPANTS PER SITE PER YEAR Year of Birth Newman Tjalka Warra Jigalong Yandeyarra Hedland Punmu Roebourne Total Total Figure 1: GRAPH SHOWING THE NUMBER OF PROGRAM BIRTHS PER SITE PER YEAR Number of participants enrolled in the SWSBSC program according to site Newman Tjalka Warra Jigalong Yandeyarra Hedland Punmu Roebourne Site 16

17 Table 8 and Figure 2 below show the number of program babies per site that were born below 2500 grams which indicates a Low Birth Weight (LBW). Table 8: NUMBER OF BIRTHS PER SITE IN THE YEARS THAT WERE RECORDED AS BEING ABOVE AND BELOW 2500 GRAMS (LBW) Site >2500 grams <2500 grams Total Newman Tjalka Warra Jigalong Yandeyarra Hedland Punmu Roebourne Total Figure 2: GRAPH SHOWING THE NUMBER OF BIRTHS PER SITE FOR THE YEARS THAT WERE RECORDED AS LBW Number of SWSBSC participants recorded as Low Birth Weight No Yes Newman Tjalka Warra Jigalong Yandeyarra Hedland Punmu Roebourne Site 17

18 Table 9 and Figure 3 below show the mean birthweight of program babies for the years per site Table 9: MEAN BIRTHWEIGHT OF PROGRAM BABIES FOR THE YEARS PER SITE Birthweight Mean 95% CI* Newman Tjalka Warra Jigalong Yandeyarra Port Hedland Punmu Roebourne *CI - Confidence Intervals Figure 3: GRAPH SHOWING THE MEAN BIRTHWEIGHT OF PROGRAM BABIES FOR THE YEARS PER SITE Mean birthweight of SWSBSC participants according to site Newman Tjalka Warra Jigalong Yandeyarra Port Hedland Punmu Roebourne Site 18

19 Table 10 and Figure 4 show the overall mean birthweight for all program births for all sites. Table 10: OVERALL MEAN BIRTHWEIGHT FOR ALL PROGRAM BIRTHS FOR ALL SITES Birthweight Mean 95% CI Figure 4: GRAPH SHOWING OVERALL MEAN BIRTHWEIGHT FOR ALL PROGRAM BIRTHS FOR ALL SITES Mean birthweight of all SWSBSC participants according to year Mean Year Data Analysis For comparative purposes, data describing all Aboriginal live births (as identified at the child s birth by race of mother) in the three site areas Hedland, Newman and Roebourne postcodes (as place of birth) for 2003 were extracted from the Maternal Child Health Research Database (MCHRDB). The MCHRDB is a composite birth record of all births in WA since This comprehensive total population database has been constructed from various administrative and statutory data sources, primarily the Midwives notification form (Midwives Notification System), death registrations and birth registrations. Other data include the Birth Defects Registry, the Cerebral Palsy Register, the Mental Health Information System, intellectual disability, the Western Australian Twin Child Health study, the Reproductive Technology Register, hospital discharges and the census data. 19

20 The Midwives Notification System consists of the birth record for every birth of more than 20 weeks gestation or a birth weight greater than 400g, generally collected by the attending midwife. This includes home births. This collection is a statutory requirement under the Health Act and Midwifery Nurses regulations. The midwives notification form is forwarded to the Department of Health within 48hrs of the birth. The information includes antenatal and perinatal information for both infant and mother, but there is limited information describing the father. However, Indigenous identification of the births is high and has been frequently validated. Data were cleaned and analysed in Stata. Place of birth was defined by postcode of place of residence at time of birth and Aboriginality identified by mothers race. Table 11: MEAN BIRTHWEIGHT FOR SITES FOR 2003 FROM PROGRAM DATA Site Mean birthweight Range Number Hedland area Newman area Roebourne Total Table 12: MEAN BIRTHWEIGHT FOR SITES FOR 2003 FROM MCHRDB DATA Site Mean birthweight Range Number Hedland Newman Roebourne Total Limitations Data used in this evaluation should be treated as limited and incomplete, especially in the case of program data. As a result of this no statistical comparisons were conducted between the two data sets. One of the limitations of the program data was the possibility of recall bias by the program coordinator. This bias may have limited the accurate identification of program participants. Another related limitation is that the participants identified as program participants were done so using information related to PHRH births. This meant that the possibility of missing births and participants that may have been identified through other hospitals was potentially high. A limitation of the using MCHRDB data was the inability to identify which births were those of program participants. Other limitations of using MCHRDB population data include the difficulties of defining region of birth, especially with a mobile population, and using race of mother only to identify Aboriginal children, without considering the ethnicity of the father. QUALITATIVE DATA The use of qualitative data is designed to take account of the complexity of the issues relating to people s experiences and interaction with the SWSBSC program and providers. Qualitative data generates a legitimate evidence base from which any future evaluation can refer. It also reveals the diversities and similarities of local needs and circumstances across the different sites and facilitates an examination of what processes could be used in different locations. The aim of the qualitative data collection in this study was to ascertain: Participants understanding and experience of the SWSBSC program; Participants experience of birthing and hospital services in the area; Participants attitudes, knowledge and behaviours regarding antenatal care and maternal and infant health; 20

21 A greater understanding of the ways in which the program responds to the needs and issues within each community; An understanding of both Aboriginal and non-aboriginal stakeholders experiences; and, Identify what is working well and why, and what factors have detracted from the program and its effectiveness. Approach An emphasis was placed on accessing a range of people to ensure an adequate account of people s different experiences in accessing, utilising and providing the SWSBSC program. The Qualitative evaluation tools - focus groups and key informant interviews were used to understand and document the experiences of different stakeholders in accessing and providing the SWSBSC program. The use of interviews and focus groups was designed to provide an insight into the diversities and contrasts of local needs and circumstances and document the different relationships Aboriginal clients have with the SWSBSC program. The evaluation of each site also enabled the different needs and circumstances within each community to be incorporated into the assessment of the effectiveness or otherwise of aspects of the program and the different periods of time that program initiatives have been underway. w Focus Groups Focus groups were undertaken with program participants. The aim was to obtain a sufficient understanding of Aboriginal women s experiences of the SWSBSC program and their attitudes towards antenatal care and maternal health. In addition, the consultations sought to take into account the impact of circumstances and needs on individual experiences and health outcomes. The approach to the consultations also involved a review of the service mix, strategies and initiatives within each site and how these respond to Aboriginal client s particular health needs and issues. w Key Informant Interviews The research team approached a number of participants to offer them the opportunity to have a more in depth discussion about a range of issues relating to the SWSBSC program and to the provision of antenatal care in communities across the Pilbara. Key Informant Interviews were conducted by phone and in person with community representatives and health professionals. To ensure that the qualitative data collection process was culturally secure, the project methodology was structured according to ethical and cultural considerations consistent with Kulunga s research principles. These principles include a commitment to Aboriginal capacity building and the genuine participation and involvement of Aboriginal people at all stages of the research. The project team was committed to ensuring methodological appropriateness in the collection of all information throughout the evaluation and all participants have been assured that it will be treated in the strictest of confidence. All respondents were guaranteed anonymity within the research project and its outcomes. Open ended questions and interview prompts were used throughout each of these processes. All prospective interviewees were provided with a verbal brief describing the project and their prospective role within it. Informed consent was sought and participants were free to withdraw themselves and/or their information from the research process at any time. A total of 17 consultations were undertaken representing a mix of focus groups and key informant interviews conducted both face to face and via the telephone. The largest focus group involved 16 Aboriginal women, and the smallest focus group involved three senior Aboriginal community representatives. 21

22 Key informant interviews were undertaken with two community nurses, one Aboriginal Health Worker, the SWSBSC program coordinator and project officer, four Strong Women Workers, one midwife, two Health Services Manager, one program manager from an Aboriginal women s organisation. Limitations Decisions regarding focus group meetings and interviews were made on the basis of the availability, willingness and informed consent of participants. In each location an attempt was made to interview several key Aboriginal informants or households. However, for a range of reasons the process did not always generate high response rates - at Yandeyarra, for instance, there are currently no pregnant women or with babies linked to the program. 22

23 ROEBOURNE The program operates at the Mawarnkarra Health Service which is centrally located and has good facilities including a crèche, a safe house and provides access to a range of allied health services including dental, optical, physiotherapy. The program has a unique relationship with the Health Service who supplies the midwife s transport, clinic, supplies and budget. The partnership of the SWSBSC program and the Mawarnkarra Health Service is a crucial element to the effective provision of the SWSBSC program and represents the ideal model of a culturally appropriate antenatal care program in a clinic based setting. The emphasis of the program is currently on younger aged mothers as this is the predominant demographic in Roebourne. There is also a focus on encouraging the participation of the father/ partner in the pregnancy, birthing process and their child s health. The view of the strong women workers is that the role of the father is crucial to healthy pregnancies and healthy children and the partners need to be provided with support. Ideally, the program would like to employ a male health worker or community support worker to engage and support the fathers/partners. The program also has a strong emphasis on the use of bush medicine and the benefits of traditional bush tucker. The Strong Women Workers introduce the younger women to particular bush treatments for pregnancy related issues and children s ailments and teach them about bush foods to have and avoid whilst pregnant. The two strong women workers work very closely with the midwife who provides the necessary clinical support and information. Each member of the team brings different skills and attributes to the program and as a team they appear to be especially effective supporting each other and enhancing each other s strengths. Both strong women workers have very strong links within the community and often will know if a woman is pregnant before the clinic or midwife has been informed. Their practice is to go and visit the woman and encourage her to come to the clinic or to take the midwife to visit in the girl s home to discuss the necessary antenatal care she requires. This approach is proving successful with many of the young girls who then feel comfortable about becoming involved in the program and coming to the clinic. While the program operates at the clinic the team also travel to surrounding communities and undertake home visits for women in Roebourne and at Wickham who are unable to make it to the clinic. The women also conduct regular yarning sessions where they address many issues linked to maternal and child health. These take place either at the clinic or outside for instance at Wickham the team often meet the women at Cossack Wharf where a health education session is combined with a fishing trip at the river. This is considered a non confrontational environment where the women can open up and freely discuss their issues especially those topics where there may be a degree of shame, for instance smoking and drinking issues. Shame was a word that was repeatedly used by participants in the focus groups and consultations undertaken for this study. People recounted incidents and experiences of feeling shame and being shamed through their interactions with Health Professionals and Hospital staff. Other women said being shamed was the reason they avoided attending for antenatal care. Shame is described as a powerful emotion resulting from the loss of the extended self (that) profoundly affects Aboriginal and Torres Strait Islander health and health care outcomes. (Morgan et al, 1997). The Roebourne SWSBSC team also accompany women to their required antenatal examinations at the Nichol Bay hospital in Karratha where the team also undertake ward visits to introduce themselves to women and provide them with some information about the program and the services. Often the women they meet have had very little contact with any medical service during their pregnancy. The Strong Women Workers also go to Roebourne Prison once a fortnight for one on one group sessions depending on the clients needs and wishes. They also travel to the more remote communities and work to ensure that the women are able to stay within their communities for as long as possible before having to get them to come into the towns in preparation for their delivery. These communities include: Mt. Welcome, 5 Mile community, Ngurawanna community and Cheeditha where the team host a nutrition based deadly tucker cooking class each fortnight. Classes teach the women how to buy nutritious food and cater for large families on a budget. Ideally, the program team would like the resources to be able to extend the nutrition classes to incorporate life skills and 23

24 be able to offer the classes to women in other communities as they play a vital role in enhancing the confidence of mums to ensure the health of their families and themselves. Issues The qualitative data collection process enabled Aboriginal women linked to the SWSBSC program to identify problems related to their attendance at the hospital in Hedland and other issues they experience in accessing care both during the pregnancy and when delivering. These problems included; Feeling uncertain and unwelcome at the hospital; Inadequate communication between hospital staff and Aboriginal women; Problems with accessibility, for example; lack of transport and long waiting times; Experiencing alienation and racism from hospital staff; and Having to attend hospital alone and leave other children. The GPs at the clinic in Roebourne do not have hospital admission rights meaning that women have to go to the GP at Wickham where they are expected to pay. This presents numerous issues including: Cost; Problems with receipt of midwives notification forms for SWSBSC program staff; Transport to Wickham; and Appointment systems. Transport services are essential for women to access maternity services. In Roebourne and surrounding communities, many women have to travel to Hedland to the hospital on the Greyhound Bus. Hospitals at Karratha have limited services and currently no obstetric services due to renovations and limited staff. However, these services will be available again in the near future. All women are expected to go to Perth or Hedland. One woman was pregnant with her 5th child and 7 days overdue when she boarded the bus. Many travel on their own as there are no facilities or money to accommodate an accompanying family member. Currently in Hedland there is no dedicated accommodation that women can access while waiting to have their baby in the Hospital or to accommodate an accompanying family member. This contributes to women being very reluctant to go to Hedland and leaving it to the last minute. It also means many women feel isolated and alone at such an important time in their life and that fathers/partners are also isolated from the birthing experience. Currently the program providers including the midwife and the clinic at Roebourne are not receiving the discharge summaries for the women on their program. The current system means the paperwork is getting lost or not received by those who have responsibility for the ongoing care of women and their infants. This issue is also linked to the fact that the GPs at the clinic do not have hospital admission rights. As a result, any data collection on the birth outcomes of the women involved cannot be accurately collected and an assessment made of the impact of the program. Analysis The cultural and clinical aspects of the program at Roebourne complement each other. Aboriginal women were particularly positive about having the program at the clinic in Roebourne. One of the other strengths of the SWSBSC program is the close links of the team to the community, the provision of home visits, and the follow up that ensures a continuity of care. The high level of commitment of the staff members and their excellent relationships with women in the communities is proving effective in establishing a strong platform from which a range of health gains can be made. 24

25 The staff and the program appear to be a central part of the Roebourne community. This is important because there are 4 language groups in the community and it can be difficult to work across these in a harmonious way. As a non-indigenous woman, the current midwife works effectively as an impartial individual yet with the confidence of the community. This is also an important aspect of the success of the program. The role of the Midwife has also greatly enhanced the coordination of the program with community health services and with local GPs and hospital staff. As a result, local GPs and hospital staff are very familiar with the program and the team and are happy to refer patients and provide women with information about the program. The midwife s role has also increased the range of health services women are regularly accessing at the clinic for example, there has been an increased incidence of women attending for pap smears and breast screening. Building trust was identified by the workers as crucial to ensuring women sought and received appropriate levels of antenatal care and continued to attend appointments following the birth of the child. At Roebourne the trust and confidence that is built up with the clinic staff during the pregnancy is working to enhance the care of the baby with women attending for immunisations and child health checks. The commitment of the team to the program and participants, and the level of trust between the team and the women on the program, appears to impact on the sort of information the program participants are willing to disclose to the team. For example, the rates of smoking, marijuana and alcohol use reported by some program participants to the program staff is likely to be the result of the women feeling comfortable with disclosing this information. As a result the team is then able to work on these issues with the women and identify strategies for attempting a measure of harm minimisation. For instance, one strategy is to encourage bottle feeding for those mothers who are drinking or using substances. The program is also proving effective in reaching out to younger women to educate and support them. This is very necessary given the high incidence of teenage pregnancies in Roebourne in which maternal alcohol and smoking are often an issue. Through an intensive case management approach, the program at Roebourne is establishing a far greater awareness and understanding among women of what a healthy pregnancy involves and how to maintain the health of a child. The aim is to have a cumulative effect on subsequent pregnancies and to ensure the mums are supported in raising their children and accessing proper care. The aim to be bale to actively including the role of fathers in the program is a great idea for the program and should be supported. At Roebourne, the SWSBSC program is gaining momentum and establishing itself with women in the community so that they understand and feel comfortable and familiar with the staff and the program. Anecdotal evidence suggests that there have been improvements in the proportion of women attending their first antenatal visit before 20 weeks gestation. Since February 2006, 33 women have been involved with the program. Currently, there are 20 women linked to the program some pregnant, some in hospital, and some with newborns. The women are encouraged to stay linked to the program until the child is three to ensure a continuity of care during the early years. The program is proving to have a ripple effect on other members of the family this is evidenced by the number of families regularly utilising the clinic. As one Health professional noted, in the long run the program is making a difference - just by having regular contact with the mums and the kids and following through on their issues and assisting them to ensure they get help for themselves and their babies. There is plenty of scope to build on the program and increase its links to other services both within the clinic and in the community including early childhood development programs. At present, the outcomes being achieved by the SWSBSC program are not easily identified through quantitative data. While qualitative data shows the impact the program is having, the quantitative data will take longer and will require consistent and structured collection to accurately reflect any trends over time. At present, the Roebourne site is proving most effective in achieving the goal of providing a culturally appropriate and holistic antenatal and postnatal care program to Aboriginal women. With increased and structured data collection and more directed training to addressing maternal alcohol and tobacco use, a subsequent evaluation may be able to identify to what extent the program is demonstrating improvements in maternal and perinatal health outcomes. 25