Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
Regional Family Birthing and Anangu Bibi Birthing Program: The First 50 Births Georgie Stamp, Sonia Champion, Pauline Zanet, Geraldine Anderson, Katrina Coulthard, Katrina Paige, Judy Taylor, Jonathan Newbury A report commissioned by Northern and Far Western Regional Health Service May 2007 Painting copyright Geraldine Anderson The painting represents young mothers coming from different groups from the north, north-west and surrounding areas of Port Augusta and Whyalla. Outside the circle are the salt lakes that identify the group. Inside the circle darker figures are the young mothers and the lighter figures represent the bibi. The trees are for making Coolamon for the bibi in birthing. The hand represents the massage and helping the bibi borning. The grandmothers are in yellow in their important role in birth with the mother and the bibi. The orange on the hand is the flames of healing, knowledge and wisdom of grandmothers. The female emu makes a nest for the eggs. Other marks represent swans in their migration back to their place. The grandmother knows where the baby can be born. ISBN 978-0-903073-l-3 Published by Spencer Gulf Rural Health School The University of Adelaide and the University of South Australia 1 Acknowledgements We thank and acknowledge the following people for their contributions: Artist Charmaine Wilson and the Port Augusta Aboriginal Women’s Advocacy Group for permission to use the Anangu Bibi Birthing Program logo on the cover of this report Geraldine Anderson for the painting on page 1 Sonia Champion for the photographs on page 1 Mandy Guest for analysis of mainstream rural women’s comparison group Christine Franks shared her expertise on equivalent inter-cultural partnership during the design, conduct and writing up of evaluation Members of the Aboriginal Women’s Advocacy Group All the stakeholders, AMIC workers and midwives who shared their views of the program Professor Judith Lumley and Associate Professor Stephanie Brown for use of the Victorian new mothers’ questionnaire Sandy Campbell and Stephanie Brown for use of the modified new mothers’ questionnaire Northern & Far Western Regional Health Service who funded the evaluation 2 Table of contents Executive summary………………………………………………………..5 Introduction ………………………………………………………………..15 Literature review…………………………………………………………..19 Methods...………………………………………………………………….34 Findings…………………………………………………………………….37 Objective 1 Participants’ views of the program…………...……37 Objective 2 Information about behaviours that may affect birth outcome………………………………………...40 Objective 3 Process of establishment…………………………..43 Objective 4 Working relationship with AMIC workers………….47 Objective 5 Participants demographic profiles and perinatal Outcomes…………………………………………….60 Discussion and implications……...……..……………………..……….. 65 Recommendations………………………………………………………..67 References and bibliography…………………………………………….68 Appendices………………………………………………………………..78 Appendices Appendix 1 Regional Family & Anagu Bibi Birthing Program Screening tool Appendix 2 Regional Management Group Terms of Reference Appendix 3 NHMRC levels of evidence Appendix 4 International Definition of a Midwife Appendix 5 Reasons given for lack of birthing at Alukura Appendix 6 Supplementary Birth Record 3 Figures and Tables Figure 1 Flow chart illustrating program relationships …………………...15 Table 1 Comparisons between rural non-Aboriginal and Aboriginal mothers using the Victorian new mothers’ questionnaire ……..39 Table 2 Antenatal visits (clinical) for Aboriginal women…………………41 Table 3 Antenatal occasions of service…………………………………...41 Table 4 Gestation at first visit by trimester………………………………..42 Table 5 Aboriginal women tobacco smoking status at time of birth……42 Table 6 Aboriginal women: smoking in second half of pregnancy……..42 Table 7 Smoking-cannabis use in pregnancy first antenatal visit……...43 Table 8 Smoking and cannabis use at postnatal visit…………………...43 Table 9 Stakeholders’ themes about the program implementation……44 Table 10 Midwives’ issues in setting up the program……………………..49 Table 11 Midwives’ themes partnership with AMIC workers…………….52 Table 12 Midwives’ ‘wish list’ to sustain and improve the program……..53 Table 13 Number of births by program site………………………………..60 Table14 Maternal age of all participants…………………………………..61 Table 15. Parity of all participants…………………………………………..61 Table 16. Method of birth…………………………………………………….62 Table 17. Birth weights………………………………………………...........62 Table 18. Apgar scores………………………………………………………63 Table 19. Gestation at birth………………………………………………….63 Table 20. Feeding method at discharge from hospital……………………63 Table 21. Feeding method at last postnatal visit…………………………..64 4 EXECUTIVE SUMMARY In 2005 and 2006 the Spencer Gulf Rural Health School in partnership with the Flinders and Far Northern Division of General Practice conducted an evaluation of the Northern and Far Western Health Service (NFWRHS) Regional and Family Birthing and Anangu Bibi Birthing Program. The evaluation includes perspectives of participants and key stakeholders, sustainability issues and ways the program could be strengthened. The program commenced in 2004 in Whyalla and Port Augusta. The program aims were to improve primary and hospital care by offering culturally appropriate obstetric support for women by Aboriginal Maternal and Infant Care (AMIC) workers in partnership with midwives. Aboriginal women of all ages from Port Augusta and Whyalla and non-Aboriginal teenage women from Whyalla can take part. Key principles were to include: • • • • AMIC worker led (for Aboriginal women) Skills exchange between midwives and AMIC workers Continuity of care-givers Primary health care The AMIC workers may be Aboriginal Health Workers, and all have participated in training, delivered in Port Augusta, in antenatal, birthing, and postnatal care. The AMIC workers and midwives are allocated a case load and follow each woman’s care from date of acceptance into the program until six to eight weeks after the birth, when the baby and mother are referred to Child Youth Health (CYH). An important component of the program was the establishment of an Aboriginal Women’s Advocacy Group to advocate and promote the cultural issues of the program. Members are respected women and Elders from several language groups in and around the Port Augusta and Whyalla areas and beyond. Meetings alternate between Port Augusta and Whyalla. In addition, a Regional Management Group consisting of key stakeholders and program staff meets bi-monthly. Its aims are to set program directions, assist in coordination, build partnerships and address sustainability issues (Appendix 2). The program is located on two sites which differ in the care provided. In Whyalla the Regional Family Birthing Program accepts Aboriginal women of all ages and teenage women from non-Aboriginal backgrounds; provides antenatal and postnatal care (excluding labour and birth) and employs one midwife and AMIC worker. The Port Augusta Anangu Bibi Birthing Program accepts Aboriginal women of all ages and provides antenatal, labour and birth and postnatal care with three part-time AMIC workers and four part-time midwives employed. 5 The evaluation focused both on the process of establishing the program as well outcomes from the first 50 births. METHODOLOGY The objectives of the evaluation were to: 1. Seek participants’ views and experience of the program; 2. Obtain information about behaviours that may affect birth outcomes; 3. Document the process of establishment of the program and any barriers to its implementation; 4. Investigate aspects of the working relationships between the AMIC workers and the midwives employed in the program, and 5. Describe participants’ demographic profiles and perinatal outcomes. Information to meet the evaluation objectives was gained from seven data sets: 1. Key stakeholders, AMIC workers and midwives’ interviews 2. Focus groups for Aboriginal and non-Aboriginal teenage women participants 3. New mothers’ questionnaires (Aboriginal program participants n=10) 4. New mothers’ questionnaires (for rural comparison group n=54) 5. Supplementary birth records completed by midwives (SA Pregnancy Outcomes Unit, Appendix 6) 6. A purpose-designed program database maintained by the NFWRHS 7. Summaries of birth outcomes in 2004 from the SA Pregnancy Outcome Unit (Chan et al 2006) FINDINGS Objective One: To seek participants’ views and experiences of the program A focus group of Aboriginal mothers from the Whyalla program highlighted positive aspects such as; support from the AMIC worker with appointments and transport to the hospital and clinics; pregnancy care other than from their GP and the program classes. Overall the women were disappointed that the Whyalla program had not provided labour and birthing care. They would have liked access to their AMIC worker or midwife in early labour to monitor and reassure them and they felt the lack of a birth attendant they knew during the birth. They believed this acted as a barrier to being well informed about pain relief, birth options and support for a normal birth. The women also believed that the cut-off point for postnatal visits was too soon. A focus group of non-Aboriginal teenage mothers highlighted that they had received visits from the midwife at locations such as school, hospital, home and Nunyara (the Aboriginal Well-being Centre). The midwife gave 6 information and education about their health and that of their baby and other support such as transport. The young mothers felt positive about the program and their midwife. However, their experiences of the health system as a whole had been dependent upon the attitudes and skills of the service providers they saw. The Victorian new mothers’ questionnaire modified by Campbell & Brown (2004) for use with Aboriginal women further modified for local use. Aboriginal researchers conducted interviews with ten Aboriginal mothers from both sites who had been through the program. Comparisons were then made between the Aboriginal mothers and 54 rural non-Aboriginal mothers. Differences were noted, although a larger sample would be needed to draw statistically significant conclusions. The Aboriginal women were more likely than the rural women to rate birthing staff as very friendly and welcoming and to know the midwife who cared for them in labour. However, they were more likely to have had someone in the labour room whose presence was not welcomed and also to have wanted more information in labour. Aboriginal mothers were more likely to receive contradictory feeding advice than rural women and were less likely to be breastfeeding at 6-8 weeks. Objective Two: Obtain information about behaviours that may affect birth outcomes The number of antenatal visits and rates of smoking in pregnancy are program performance indicators The number of antenatal visits for women enrolled in the program in Whyalla and Port Augusta were obtained from the supplementary birth record. For Aboriginal women data were missing for 15 out of 45 records (33%). When missing data were excluded, 15.6% of Aboriginal women had fewer than 7 visits (compared with 39% for Aboriginal women and 6% of non-Aboriginal women SA wide in 2004 (Chan et al 2006). Gestation at the first visit in the program by trimester of pregnancy was calculated from data from the program database. Data were missing for 3 out of 52 women (5.8%). Only 17.3% had their first visit in the first trimester (before the 12th week) and 42.3% did not attend until the third trimester (after the 24th week). It is possible that women may have had ‘first visits’ to professionals not linked with the program that were not recorded. Smoking (including cannabis) was collected at the first antenatal visit and again at the last postnatal visit. Substantial missing data: (first antenatal visit n=13, 25%) and: (postnatal visit n=16, 32%) should lead to cautious interpretation. If missing data are excluded the overall rate of tobacco smoking at the first visit was 56.4% (Aboriginal women only 59%). This compares with SA rates for Aboriginal women in 2004 of 57.8%. Cannabis use was 10.3%. At the postnatal visit 65% were smokers. 7 Objective Three: Document the process of establishment of the program and any barriers to its implementation. Several themes emerged from interviews with key stakeholders about implementation of the program. The important role of the AMIC worker All stakeholders saw the employment of AMIC workers as a highlight of the program. The role of AMIC workers in facilitating positive experiences for the women and “bringing respect for culture” was acknowledged. However, issues of inadequacy of resources, including the number of hours AMIC workers were employed; support, training and development were equally highlighted. The development of formal mechanisms to ensure that all AMIC workers received adequate support in their roles was seen as important. The support from working in a team with other AMIC workers was acknowledged. The Whyalla program was limited in this respect, having only one AMIC worker. Operational differences between the two sites The model of service is complex and all informants spoke about the issues arising from the operational differences between the two sites. These included limited funding which meant staff had not been involved in birthing and labour in Whyalla, and also affected the number and roles of AMIC workers and midwives in the program. Role of the Aboriginal Women’s Advocacy Group All informants were acutely aware of the Advocacy group’s potential to support the AMIC workers, ensure cultural sensitivity, share their cultural knowledge, enable community ownership, and to assist in achieving positive outcomes for the Aboriginal women in the program. However, most participants thought there was some way to go to fully realise the benefits of the Advocacy group. Resources and sustainability Overall, stakeholders noted that it was important to incorporate the new program in the mainstream antenatal, birthing, and postnatal care for all Aboriginal and teenage new mothers in Port Augusta and Whyalla. It was thought that this would ensure adequate resources, resolution of the complexities of the management of the program, and ensure sustainability. To date, the financial and human resources to develop the program have been considerable. This includes the time of the Advocacy group. Goodwill, in addition to program funds has ensured its success. Objective Four: Investigate aspects of the working relationship between the AMIC workers and the midwives employed in the program The role and views of AMIC workers Five AMIC workers were interviewed by an Aboriginal researcher. The scope of the role was very broad and involved a complex array of tasks beginning with the antenatal visits. 8 We get the girls to come up to the hospital if they want to have their antenatal screening …and so we have to go out and arrange that ..(and) bring them into the midwives….the midwives are doing mainly the antenatal screening on the girl, but us AMIC workers, well me, I am trained in that area so I also do the checks along with them. ….also we have come across a lot of girls that need support in housing and they need support in finances…and we have a case conference meeting every fortnight …. AMIC worker Another when asked what she did in her AMIC role replied: What don’t I do! Basically support – there’s about 20 Aboriginal women that we get work for the year and we get given a caseload of women that we take care of. So for me it’s wherever those women are and I go out and support them as much as possible for their antenatal care and antenatal education you know helping them with anything they want to know during pregnancy. Making sure that their bloods are being done, all those sorts of things, and being a support for them during their birth, because the majority of the girls I’ve looked after I have been at the delivery there. So when they are ready to give birth to their baby… it’s that birth support as well. After that – postnatal support as well, you know, help them with breastfeeding, and teaching them how to breastfeed and like referral too. They might not have much because its their first baby, they want their own house, after living with you know, their family, they might want to get a house organised that sort of thing, help them with that, furniture…, we use all the services that I can here in Port Augusta, and then, like when they are referred on to CYH at about 8 weeks. Making sure they get to that first baby’s health check, making sure that we talk about contraception you know, what sort of thing they might want to have and organising that with whoever, and then making sure they have the check up with their doctor that everything is ok. So it depends on the individual women what they want. If it’s a more traditional woman then we make sure we look at.. all the things that we can offer which language group they belong to, but if not it’s support with whatever that woman wants really. AMIC worker. Being able to communicate with women whose first language was not English or who did not speak any English was considered important. A crucial part of the role was to advocate for Aboriginal women in a hospital setting. Sometimes a woman might feel too shy or shame to seek the help she needed with a non-Aboriginal staff member. According to one AMIC worker “a lot of the girls that you come across (are) like that, they don’t want to talk to the nurses, and so they tell you, and they want you to go and talk to the nurses…” The value of being able to speak up with confidence when working with or alongside mainstream services was described: 9 I think it’s important to know how to deal with mainstream services. They don’t know our way and sometimes they push things the other way, that they want them. But I think its important to have strong Aboriginal women working in the program so that we can stop and say: “no, hang on a minute, that not the way to do it that’s not the way we do it, when it comes to our women, this is how it should be done.” AMIC worker When asked specifically about working in partnership with the midwives in the program there was enthusiasm: … I think non-Aboriginal people and Aboriginal people working together is a good way. Non-Aboriginal people can’t offer the service without us, but we can’t do it without them either… the clinical knowledge that we learned from the midwives, you know, without that, we couldn’t do our work properly. But the same thing, they couldn’t do it without us because they need our cultural knowledge. They need to know the way we deal with people. And I think the good thing is this; they teach us the clinical way and we teach them the cultural way. So it just works really well like that and in the partnership, between the hospital and Pika Wiya Aboriginal Health Service. That’s the way it should be that’s the way it can work, you know. You feel like you can make a difference for our people if we work that way. AMIC worker Another AMIC worker felt this model of working together should be introduced everywhere: I want our workers, AMIC workers to be everywhere, not just here. I think Aboriginal health workers should be working with midwives everywhere, and you can really see the difference it makes, you know, for women and babies. One of the things that we set up this program for was that we wanted to increase babies’ weights. If they don’t look after themselves in pregnancy babies can be small…. …And breastfeeding, how important that is…Information, I think a lot of our girls never had that information, and they didn’t know that these things happened, so the more people are talking about it- the program set up like that – Aboriginal health workers doing that work, with our girls it’s got to improve for the women and for the babies. AMIC worker Mothers could be more likely to bring up issues when alone with an AMIC worker. However this changed when the women got to know the midwives and saw the AMIC workers and midwives working in partnership: But after a while though, those girls start to feel comfortable with the midwives as well, because they can see us working together…. And because there’s only 4 midwives in the program, 10 they are easy to get to know. They are great midwives, they are easy to talk to and they have worked with Aboriginal people before and they are willing to listen to what we say and they work along with all of us. So that’s why when I talk about team they’re our team as well. AMIC worker Six midwives were interviewed, three employed in Port Augusta and one in Whyalla along with both the Nurse Unit Managers (NUMs) who had line management roles with the midwives and AMIC workers. All the midwives agreed that a crucial part of the program was the twoway learning that they experienced and that a large and ongoing part of their role was sharing of their specialised midwifery skills and knowledge with the AMIC workers. Themes that arose from the midwives’ interviews about working in partnership with AMIC workers were: • • • • • • • • • A commitment to working inter-culturally Development of relationships took time Good experiences and outcomes when family structure is strong Challenges associated with the AMIC worker’s role AMIC worker’s social, cultural and community knowledge and connections crucial to women’s attendance and program success AMIC workers developed excellent clinical skills with increased experience Equality in team decision-making and strong AMIC role in client selection High personal satisfaction; and Ongoing two-way learning with AMIC workers A strong commitment to continuing to develop the partnership model was highlighted by all the midwives. Key informants also perceived there to be positive relationships between AMIC workers and midwives. This had led to increased understanding as highlighted in the following quote: I feel there has been a changed attitude and greater understanding of the non-Aboriginal midwives and staff about the challenges faced by Aboriginal women. There is increased respect and understanding. Stakeholder Objective Five: Describe participants’ demographic profiles and perinatal outcomes During the one year timeframe there were 51 births over the two sites with one perinatal death at 25 weeks gestation. 11 Birthweights: Six birthweights were not recorded and were therefore unavailable for this report. If missing data are excluded, overall, there were 9 (20%) low birthweight babies (less than 2.5 kg), 8 (18%) of whom were Aboriginal babies. This compares with low birthweight rate of 8.7% in all SA births; and is half the reported rate for Aboriginal births in 2004. Method of feeding: Among all the women for whom data were available, 35 (87.5%) were breastfeeding at discharge from the hospital and 31 (also 87.5%) of the Aboriginal women were breastfeeding at hospital discharge. At the last postnatal visit at 6-8 weeks rates had dropped to 52.5% of the Aboriginal women breastfeeding and one teenage woman. DISCUSSION AND IMPLICATIONS The evaluation revealed challenges in establishment of the program and some dissatisfaction that the Whyalla site appeared less well resourced. Longer-term resources would enable what has been achieved to be consolidated and could provide greater access to the pregnancy, birthing and postnatal care provided by the AMIC worker and midwife model in Port Augusta. For example, many Aboriginal people from language groups in remote communities within the NFWHS region such as the, Oodnadatta, Coober Pedy or the Flinders Ranges have family connections in Port Augusta and may present there for antenatal care. In its present form, the program is not designed to include these women although small numbers have received care (personal communication Program Manager). There are no facilities for these women to give birth in their home communities. They often travel to a regional centre several weeks before the expected birth. This is usually Port Augusta (or Alice Springs for women from the Anangu Pitjantjatjara Lands). An AMIC program is being established in Coober Pedy for antenatal and postnatal care (personal communication stakeholder). Although low in number, teenage women were positive about forming a relationship with their program midwife. Young women stated that they would have welcomed extra support with transport and other issues such as that provided by AMIC workers. An equivalent teenage-focused model could be designed specifically to meet young women’s needs. The sample of 45 women, although small, is nearly one tenth (9.4%) of the 484 Aboriginal births recorded in 2004). Women went through a selection process to secure eligibility to enter the program to identify risk factors. The effectiveness (sensitivity and specificity) of the screening process has not been documented therefore it is difficult to determine whether women in this study were at greater risk. In spite of significant gaps in the data many outcomes for this group appear comparable with data for Aboriginal women in South Australia in 2004. The sample was too small to ascertain perinatal mortality rates. There was a high prevalence of late booking for antenatal care in this sample. Only 1 in 6 had their first antenatal visit in the first trimester, and 12 2 in 5 did not attend until the third trimester. It is unclear whether any of the women received care elsewhere although this would be expected to be written on the hand-held pregnancy record now in wide use. Nevertheless, Aboriginal women in the program were more likely to have had more than 7 antenatal visits compared with the SA data for 2004. The rates of smoking in pregnancy and babies classified as low birthweight were also comparable with the SA data. Whether the increased antenatal visits provided by midwives and AMIC workers in the program (both clinical and supportive) can translate to improved overall outcomes will require longer term follow-up. Whether an antenatal visit had been clinical (hands-on) or supportive was not clearly defined in the program database. Clarification and modification is needed to be able to assess any potential advantages of both types of visit. Qualitative findings from the interviews demonstrated that inter-cultural partnerships between the AMIC workers and midwives do exist, that they are mutually satisfying and that they have provided opportunities to work both ways. The recognition and development of equivalent inter-cultural partnerships between Aboriginal and mainstream workers is a best practice model that has been successful in other settings (Franks et al 1996). Building on these relationships will be vital in sustaining the program. Although it was clear that the AMIC worker is pivotal to the success of the program, an expectation for the program to be “AMIC-led” may be a misnomer in view of the emerging two-way partnership model that the evaluation revealed. It is also important to acknowledge that along with working in the program, AMIC workers, as members of their communities, have obligations and priorities within their own family systems. The AMIC worker role will continue to need acknowledgement, support and development. The Aboriginal Women’s Advocacy group has a strong role in contributing to understanding of working both ways and thus moving towards good birthing practices for healthy Aboriginal mothers and babies. Supportive links between the Advocacy group and program management need to be strengthened and sustained and out of pocket expenses acknowledged. Members were keen to strengthen the cultural support provided by the program by working in partnership with AMIC workers and directly with Aboriginal women, especially those with restricted family support. The substantial amount of missing data is disappointing. Clearly, an accurate demographic picture of women participating in the program is crucial. Only then can the program be accurately monitored for any improvements in clinical outcomes. A long-term aim should be the achievement of complete data sets, particularly the performance indicators, especially if the program is to be introduced more widely. Eight recommendations to strengthen the Regional Family Birthing and Anangu Bibi Program are suggested. 13 RECOMMENDATIONS 1. The Anangu Bibi AMIC worker/midwife partnership model be incorporated as a central component of the care offered to any Aboriginal women presenting for antenatal care in Whyalla or Port Augusta to increase the program’s sustainability. 2. That the feasibility of developing a model of care for teenage nonAboriginal women equivalent to the AMIC worker/midwife partnership be considered. 3. As the AMIC worker is pivotal to the success of the program we recommend that the role be further acknowledged, resourced and developed. Strategy: Support AMIC workers to participate in an established accredited course that leads to a professional qualification. 4. Set aside funding for increased AMIC worker hours and further employment opportunities for more AMIC workers from different language groups with links to the Spencer Gulf region in consultation with the Aboriginal Women’s Advocacy Group. 5. Develop processes to enable AMIC workers to continue in the care of mothers and babies beyond the 6-8 week program cut-off point. Strategy: Encourage working partnerships between AMIC workers with the CYH Indigenous Culture Consultant to enhance continuity of care for Aboriginal mothers from a range of language groups. Strategy: Investigate the feasibility of employment of AMIC workers in the universal home visiting program of the Child and Youth Health so they can continue to provide continuity of care. 6. That members of the Aboriginal Women’s Advocacy Group be provided with further opportunities to directly support mothers and families in the program. Strategy Legitimise formal links between the Advocacy group and program management by funding participation fees. Strategy Strengthen the cultural support provided by the program through linking Advocacy group members to those with limited family support and to women enrolled in the program from outside Port Augusta and Whyalla. 7. That adequate equipment, space and infrastructure be provided at both sites for the AMIC workers and midwives who work together in the program. 8. To refine the program database in consultation with the AMIC worker and midwife users to simplify the management, collection and analysis of outcomes and performance indicators and further establish any clinical benefits of the program. 14 INTRODUCTION This is an evaluation of the Regional Family Anangu Bibi Birthing Program for the Northern and Far Western Health Services following the first 50 births in the in Whyalla and Port Augusta hospitals. The program provides a model of pregnancy and birthing care for Aboriginal and Torres Strait Islander women and non-Aboriginal teenage women. The evaluation occurs in the context of important developments in birthing services being offered to Aboriginal and Torres Strait Islander women. There is emerging information about the effectiveness or otherwise of attempts to improve primary and hospital care for Aboriginal women to achieve healthier mothers and babies. Our evaluation should be seen in this context. Generally it has been found that mainstream birthing services do not meet the needs of Aboriginal and Torres Strait Islander women resulting in low antenatal attendance (Campbell 2000). There is also evidence to suggest that improving primary health care for young pregnant women is warranted (Johnson & Coory, 2005). In 1990 the Victorian Birthing Review (Victorian Health Dept. 1990) recommended processes to “ensure the continuing involvement of female Aboriginal health workers in the provision of antenatal and postnatal support for Aboriginal women” and “to investigate the development of education programs on birthing issues for health workers of Aboriginal background, with an emphasis on antenatal and postnatal care; and encourage the participation of Aboriginal women in the planning of health services and the establishment of different models of care”(p.76). In 2000 Koori Maternity Services Program presented the report “From her to maternity.” The report highlighted that Aboriginal midwives are in short supply and it was likely that teams would involve non-Aboriginal midwives. Therefore cultural awareness, sensitivity and value placed on the unique role of the health worker were needed in developing models (Campbell 2000). Overview The Northern and Far Western Region has a population of 53,220. The 756,742 square km area makes this the largest and most sparsely populated geographical region per km in South Australia (ABS 2006). The Aboriginal first peoples of the region comprise 6002 (11.3%) of the population. At the time the program was planned, at the Port Augusta Hospital, there were considerable discrepancies between Aboriginal and non-Aboriginal pregnancy outcome statistics, with Aboriginal women more likely to have fewer than seven antenatal visits; be under 20 years of age; and have an emergency caesarean section birth (Boles et al 2004). There had also 15 been ongoing concerns about how Aboriginal babies fared when compared with the non-Aboriginal South Australian babies. In 2004 the perinatal mortality rate was more than double for Aboriginal babies, low birthweight (less than 2.500kg) was 3 times higher and preterm birth (before 37 weeks gestation) was double. In addition, 57.8 % of Aboriginal women were smokers at their first antenatal visit compared with 18.9% of non-Aboriginal women (Chan et al 2006). During 2003, Statewide Aboriginal women’s workshops were held and concerns were raised by senior women of the region. A clear statement was delivered from one workshop: Healthy pregnancy and birthing is a life process and is an important issue for the health of all our communities. This issue should be a priority in health planning processes, with appropriate and adequate ongoing funding. Aboriginal and Torres Strait Islander women want to be cared for by Aboriginal and Torres Strait Islander midwives and Health Workers. August 2003 (in Buckskin M. 2004) In 2004, the Northern and Far Western Regional Health Service (NFWRHS) applied for and received public health outcomes agreement funding to establish an alternative birthing program for Aboriginal and Torres Strait Islander and non-Aboriginal teenage women in the region. Initially known as the “Alternative Birthing Program” in 2005 on the suggestion of the Aboriginal Advocacy group the name was changed it to “Family Anangu Bibi Birthing Program for Port Augusta and the “Family Birthing program” in Whyalla. The combined program is known as Anangu Bibi Family and Birthing Program. The program is organised at the regional level under the auspices of the NFWRHS and implemented at site level with regional support. Program design The program is designed to provide culturally appropriate obstetric support to women of which Aboriginal Maternal and Infant Care (AMIC) workers are central (Figure 1). The program aims to provide holistic care; physical, spiritual, emotional and the social aspects of mother and baby in a culturally appropriate individual-focused model. The key principles of the program are: • • • • AMIC worker led (for Aboriginal women) Skill exchange between midwives and AMIC workers Continuity of care Primary health care 16 Role and selection of AMIC workers The AMIC workers are selected because they are trusted and respected women who can relate to Aboriginal mothers. They may be trained Aboriginal Health Workers. All have participated in training, delivered in Port Augusta, in antenatal, birthing, and postnatal care. The AMIC workers and midwives are allocated a case load and follow each woman’s care from date of acceptance into the program until approximately six to eight weeks after the birth, when the baby and mother are referred to Child and Youth Health. Aboriginal Women’s Advocacy Group An important priority in setting up the program was the establishment of an Aboriginal Women’s Advocacy Group whose role was to advocate and promote the cultural issues of the program. Members of the group are respected women and elders from a number of language groups in and around the Port Augusta and Whyalla areas and beyond. The group alternates its meetings between Port Augusta Whyalla and meetings are planned to be monthly. Regional Management Group A Regional Management Group consisting of key stakeholders and program staff was established and meets bi-monthly. Its aims are to set directions for the program; assist in coordination, build partnerships and address sustainability issues of the program. The terms of reference of the group are presented as Appendix 2. Program location The program is located in two sites within the region, each with a slightly different approach and focus: The Whyalla Regional Family Birthing Program accepts Aboriginal women of all ages and teenage women from non-Aboriginal backgrounds; provides antenatal and postnatal care (excluding labour and birth) and employs one part-time midwife and one part-time AMIC worker. The Port Augusta Anangu Bibi Birthing Program accepts Aboriginal women of all ages and provides antenatal, labour and birth and postnatal care. Three AMIC workers employed between Port Augusta Hospital and the Pika Wiya Health Service (1 FTE total) and four part-time midwives (0.5 FTE) provide the care. The AMIC workers and midwives are allocated a case load and follow each woman’s care from date of acceptance into the program until 17 approximately six to eight weeks after the birth, when the baby and mother are referred to Child Youth Health (CYH). Participant Eligibility The program is available to: • • Aboriginal women of all ages in Port Augusta and Whyalla Non-Aboriginal teenage women from Whyalla Women are assessed using a purpose-designed selection process of medical and social risk factors (Appendix 2). Those with certain risk factors including young age, social disadvantage, substance use, poor obstetric history such as medical complications in pregnancy or a previous perinatal death are accepted into the program. Figure 1 Flow chart illustrating program relationships Hospital Management Committee Midwife Young Teenage Mothers Aboriginal Mothers & Families AMIC Workers Aboriginal Women’s Advocacy Group ACCHS Health Workers 18 LITERATURE REVIEW How the literature was accessed For the literature review evidence from both national and international sources has been accessed by a variety of methods which include: electronic searches of Medline, CINAHL and databases that specialise in Indigenous health such as Australian Indigenous Health Infonet; in pregnancy, childbirth and maternal and child health such as the Cochrane Database of Systematic Reviews (CDSR) and obstetric and midwifery journals; the World Health Organization on line the National Health & Medical Research Council (NHMRC). To ensure that wherever possible, the most effective and appropriate research methods are utilized to guide practice the use of clearly defined Levels of Evidence when assessing interventions in healthcare is recommended (NHMRC 1998, Appendix 3). Promoted by Cochrane (1972) but having its genesis in pregnancy and childbirth (Chalmers et al 1989) this approach is known as evidence-based practice (Sackett, Richardson et al 1997). In this literature review, when assessing interventions Level I evidence or Level II evidence have been utilised where possible (NHMRC 1998a). On other occasions Level III 1-3 has been used. In the many circumstances where Levels I-III 1-3 was unavailable, it was necessary to make use of clinical experience, expert opinion, reports (both published and unpublished) and occasionally personal communication. Free access to high quality regularly updated systematic reviews in the field Pregnancy and Childbirth is available at www.nicsl.com.au/cochrane/ , a service funded by the Australian government. Introduction The perinatal mortality rate is used as an important indicator of the quality of pregnancy care (WHO 2001, Department of Human Services (2001a, Child Health Research Project 1999). In Australia the perinatal mortality rate is very low in comparison with developing countries however, for Aboriginal and Torres Strait Islander women it is double that of other Australian women (Edwards & Madden 2001; Laws & Sullivan 2004). The rates increase exponentially with remoteness (Chan et al 2005). As well, the infant mortality rate varies by state from double to three times that of the total population (ABS 2004). Aboriginal and Torres Strait Islander babies are also more likely be classified as being low birth weight (less than 2.5 kg) and have an increased risk of being born pre-term (before 37 weeks gestation) factors that are associated with increased childhood morbidity (Humphrey & Holzheimer (2001). Risk factors for low birth weight include socio-economic status, parity, age, nutritional, smoking and health status during the pregnancy (Laws & Sullivan 2004). Barker and colleagues have revealed associations between low birth weight and poor fetal nutrition and an increased risk of cardiovascular disease, obesity, diabetes and hypertension as adults (Barker 1992, 19 Barker et al 1992, Barker et al 2005) conditions that are found to be disproportionately high in Aboriginal and Torres Strait Islander peoples (ABS 2006). Interventions in pregnancy have been based on the rationale that increasing antenatal attendance and identifying health issues in utero in turn will lead to healthier mothers, babies and children. Several models of care with this as a major aim have been described and will be discussed in this literature review. Mainstream health services That most mainstream birthing services do not meet the needs of Aboriginal and Torres Strait Islander women and can lead to low antenatal attendances is well documented (Campbell 2000). Mainstream health services provide a range of mostly curative and some preventative services that includes tertiary, district and community hospitals and health centres and general medical practices. Before the advent of community controlled Aboriginal Health Services in the1970s (Briscoe 1974), mainstream health services were the means by which most Aboriginal and Torres Strait Islander people accessed nontraditional health care. Such services continue to be an important source of the healthcare accessed by Aboriginal and Torres Strait Islander people. Many use it mainly for medical emergencies and childbirth (Campbell 2000). In the Victorian report “From Her to Maternity” about Koori birthing Campbell (2000), states “Story after story maintains that contact with hospitals is regularly a traumatic experience for Aboriginal people. This trauma is in addition to that caused by their immediate medical needs.” In recent years increasingly, mainstream health services have employed Aboriginal and Torres Strait Islander Health Workers and liaison officers to support their people in what can be an alien and frightening environment (NHMRC 1997). Research into factors that limited communication between Aboriginal renal patients and medical, nursing and allied health staff found that miscommunication was pervasive and shared understandings of key concepts were rare (Cass, et al. 2002). Aboriginal and Torres Strait Islander community controlled health services The deficiencies in mainstream health services in meeting the needs of Aboriginal and Torres Strait Islander people and a move towards toward self-determination and management following the 1967 referendum saw the establishment of the first Aboriginal controlled medical service in Redfern, Sydney in 1971 (Briscoe 1974). There are now over 100 Aboriginal and Torres Strait Islander community controlled health services throughout Australia and the Torres Strait Islands (House of Representatives Standing Committee 2000). Most provide integrated services relating to the health and social issues prevalent within the community and as such have a high level of community participation 20 (Scrimgeour 1997). In Health is Life, the report of the Standing Committee on Family and Community Affairs (2000) the National Aboriginal Community Controlled Health Organisation (NACCHO) is widely quoted. NACCHO consider that a well resourced community controlled health service has a number of benefits which include: • significantly improved access • the full range of primary health care services in one place – with service delivery being integrated and holistic • culturally appropriate care • value for money as services can be targeted because they are based on local knowledge • a major source of education and training for Aboriginal people; and • a pool of knowledge and expertise about Aboriginal health which enables the sector to not only deliver appropriate care but also to advocate effectively for Aboriginal people in health House of Representatives Standing Committee 2000 p.38 Role of the Aboriginal Health Worker and associated issues Aboriginal Health Workers (AHWs) have a crucial role in the health promotion and well being of their communities. There have been several efforts to define the role and functions with some disagreement revealed (NHMRC 1997). Using a central Australian sample, Tregenza & Abbott (1995) conducted research into stakeholders’ perceptions of the role of the AHW. Problems identified related to attempts to fit AHWs into a nonAboriginal style of structure, disputes about the role between various stakeholders and bureaucrats and a slow response to changing situations in relation to role development. The authors highlight considerable diversity of the role in individual situations. Common aspects of the role have been summarised as being: held by an Aboriginal and Torres Strait Islander person and having a clinical and health promotion function and a community development and cultural broker role (Abbott et al 1998). The role of cultural broker or agent is frequently mentioned in the literature. Soong (1983) undertook research with AHWs in Arnhem Land, describing the cultural broker role undertaken by the AHWs observed by her as one of mediating between two cultures. The functions of the role of the AHW have been further classified by Tregenza & Abbott (1995) under seven areas: 1. 2. 3. 4. 5. 6. traditional health clinical care and western medicine health education and promotion environmental health community care administration, management and control; and 21 7. policy development and program planning Addition of other skills including care during pregnancy and childbirth There have been concerns expressed at the increasing load AHWs are expected to carry within a community (Sibthorpe et al 1998, Forrest 1995). The workload can be intense and AHWs are often on call for 24 hours a day. This can lead to high levels of stress. Other factors contributing to stress are a lack of support from non-Aboriginal nurses and doctors working within their communities and also from their own communities, poor career prospects and low pay. All may be combined with very high expectations of the AHW (Sibthorpe et al 1998, Flick 1997, Jackson et al 1999). These issues are ongoing and despite slow progress, should be improved by the development of national criteria for education, competency and awards, pay and opportunities for career advancement. Forrest (1995) has called for the continuing development of specialist roles for AHWs, which are clearly in under supply within Aboriginal and Torres Strait Islander communities. Given the importance of maternal and child health and the ongoing problem of access a case can easily be made for the development of a specialist AHW role in this area, as is happening in some centres. Although a female AHW may be the first point of contact for pregnant women, a lack of maternal health care skills will reduce her effectiveness in helping improve maternal and child health. Widespread attempts to strengthen this aspect of the role by placing AHWs with midwives are being undertaken in several projects in New South Wales funded by NSW Health (personal communication, unpublished report 2001) and in Victoria (Campbell 2000). Women’s health in the reproductive years Within any culture the birth of a baby has a special significance for the parents and family as well as the community. Healthy mothers and babies are the building blocks of robust communities (Health Department of Victoria 1990). Nevertheless Aboriginal and Torres Strait Islander Australian women and their babies continue to have unacceptably high mortality and morbidity (ABS & AIHW 1997 and 2001 NHMRC 1998). Summaries of international research show poor outcomes to be associated with poverty, lack of access to basic care, age, parity, poor nutrition and illiteracy (AbouZahr & Royston 1991). The risk increases for those pregnancies in women “too young” (adolescent and still growing); “too old” (aged 40-49); “too close” (having less than a 2 year pregnancy interval); and “too many” (more than 4 children) (Fathalla 1990). However pregnancy and birth care with access to a trained professional or attendant can improve outcomes (Safe Motherhood Initiative 1992). Low birth weight and intra-uterine growth restriction (IUGR) and smoking Low birth weight either associated with prematurity or intra-uterine growth restriction (IUGR) is a major cause of mortality and morbidity in babies. A high rate of pre-term birth was found in a study in 5 Aboriginal communities in north-western Australia (Smith et al 2000). In another 22 study, 96 Aboriginal newborns in 4 remote far north Queensland communities were compared with 96 non-Aboriginal newborns. The mean birth weight was 450 g lighter for the Aboriginal babies (Humphrey & Holzheimer 2001). Prematurity may or may not be associated with IUGR. Small babies are more likely to be growth restricted in developing countries and among Aboriginal people. On the other hand small babies are more likely to be preterm in developed countries (Barker & Fall 2001). There is a deficit in the birthweight in babies born in poor countries when compared with developed societies that according to Jackson et al (2001) ”may be as great as 800g”. This has implications for later quality of life as revealed in the Barker hypothesis (Barker 1992, Barker et al 1992, Barker et al 2005). For fourteen years there has been mounting evidence that coronary heart disease; hypertension, diabetes and stroke, conditions common among Aboriginal and Torres Strait Islander Australians originate from fetal adaptations to malnourishment during pregnancy (Barker 1994, Barker & Fall 2001). Barker’s hypothesis continues to find further support from data from adults who were exposed to the Dutch famine of October 1944 to May 1945 in utero and that timing of the exposure determines which organ system is involved (Painter et al 2005). Furthermore, and importantly, when considering Aboriginal health an overview by Roseboom et al (2001) suggests that maternal malnutrition may also affect adult health without always affecting birth weight. Smoking during pregnancy is associated with preterm birth and small for gestational age (SGA) birth weight (Chan et al 2005). In South Australia in 2003 the percentage of low birth weight babies (<2500g) was 7%, but among babies of Aboriginal mothers the proportion was 18% (Chan et al 2005). Using the South Australian data (Chan et al 2005) found that Aboriginal women had a higher rate of smoking at the first antenatal visit than non-Aboriginal women (59.3% vs. 19.8%). Data from 2000 found that women who smoked had a higher relative risk of preterm birth (1.62), SGA (2.28) and of low birth weight (2.52). The researchers recommended smoking cessation programs in an appropriate cultural context, especially for young Aboriginal women (Chan et al 2001). A Cochrane systematic review of smoking cessation found that smoking cessation programs do work in pregnancy and wider population-based strategies should also be implemented as well as support in the wider community for strategies to reduce social inequalities Lumley et al 2006)(Level 1 evidence). A Western Australian study found tobacco smoke exposure of Aboriginal infants to be higher than the overall population (Eades & Read 1999) whilst recent ABS figures show Aboriginal and Torres Strait Islander adults to be more than twice as likely to currently be smokers than other Australian adults (ABS 2006). The problem of remoteness There is consistent evidence that lack of access to appropriate health services results in poorer outcomes for general health (WHO 2001a) as well as maternal and perinatal outcomes (WHO 1999, Chan et al 2005). The provision of maternity services in rural and remote Australia is 23 hampered by a chronic shortage of GP obstetricians and midwives and closures of smaller maternity units - with 120 having closed in the past 10 years (RDAA 2005). In Australia rural and remote areas carry the greater burden of deaths (Department of Human Services 2001a). Access and equity to appropriate health services and professionals are every-day concerns for pregnant Aboriginal and Torres Strait Islander women, particularly those in rural and remote areas. Women in remote areas have to travel into regional centres and await the birth of their babies away from their cultural ties. The views of Aboriginal women in 9 remote Top End communities were sought on their birthing needs (Kildea 1999). Key findings were related to the need for choice; safety; escorts; safe hostels with food available; a skilled midwife in every community; basic equipment; adequate antenatal care; updating skills for AHWs and nurses; better communication in mainstream hospitals; a birth centre in Darwin and community birthing for low-risk women (subject to certain conditions being met) (Kildea 1999). The Safe Motherhood Initiative has attempted to address this issue in severely afflicted developing countries in a number of ways that include strengthening primary health care initiatives at village level (WHO 1998). Many remote Aboriginal and Torres Strait Islander Australian communities face problems of the magnitude of developing countries, an issue that has been cause for concern for several decades (Hertzel et al 1974, Nathan & Leichleitner Japangka 1983, NHMRC 1989, Commonwealth of Australia 2000, Chan 2005). Evidence of the benefits of antenatal care A popular textbook for midwives first published in 1953 stated “It may be difficult for the modern midwife to realise that until about 1915 few pregnant women came under the care of doctor or midwife until they actually went into labour” (Myles 1975 p. 73). The aim of antenatal care is to screen for any deviation from normal good health. Therefore, identification of pregnancies that may be at greater than average risk is an essential part of antenatal care (Enkin et al 1995). The provision of appropriate reassurance and education are also involved (Enkin et al 1995). There is very little agreement among professionals as to what are the most important components of antenatal care. Haertsch et al (1996) surveyed the views of a representative sample of midwives and obstetricians in New South Wales and found 100% agreement on only one item, the need for blood pressure screening during pregnancy. In most parts of the world until recently the recommended number of antenatal visits has followed a largely unquestioned tradition established in the United Kingdom in 1929 (monthly until 30 weeks, fortnightly until 36 weeks and weekly until birth) (Hall, Mcintyre & Porter 1985). In the UK and elsewhere the introduction of this regimen of antenatal care along with improved care in labour comprised a huge leap forward in the care of pregnant women and coincided with a lowering of maternal and perinatal mortality. Although many factors were likely to have been involved, 24 universal antenatal care was seen to have been responsible, at least in part for these improvements (Hall 2001). More than 40 years later Cochrane (1972) called for randomised controlled trials to evaluate the benefit of this most common “screening procedure” (Cochrane 1972). In 1980 (Hall et al 1985) undertook a comprehensive before and after study of antenatal care including women’s views. Their study was ground breaking in that it raised a number of questions and paved the way for the randomised trials of reduced visits and other aspects of antenatal care that were to follow (Villar et al 2002). Between 1995 and 2001 ten adequately designed randomised trials of reduced visits (compared with the current local standard number) were conducted in developed and developing countries involving over 60,000 women (Villar et al 2002). The last of these was a multicentred trial conducted in Argentina, Cuba, Saudi Arabia and Thailand involving 24,500 women that compared a 5-visit model with an 8-visit standard model for healthy women (Carroli et al 2001). Findings of the other trials were confirmed. Having reduced visits did not appear to affect perinatal and maternal outcomes. The Cochrane systematic review of all the trials found no differences between the groups for pre-eclampsia; urinary-tract infection; postpartum anaemia; maternal mortality, low birthweight or perinatal mortality. In developed countries only, women were less satisfied with the reduced visit regimens. Reduced visit regimens in developed countries usually included more visits than standard care in the less developed countries (Villar et al 2002). These trials demonstrate that the traditional western style number of visits bestows no real benefit on outcomes and mostly costs more (Villar et al 2002). Aboriginal and Torres Strait Islander women have long been considered to be at risk because many have received little or no antenatal care (Chan et al 1999-2006). It has long been an aim of improving the pregnancy care of Aboriginal and Torres Strait Islander mothers and babies to increase the number of antenatal visits (Chan et al 1990, 2006). Antenatal guidelines It is only recently that guidelines in pregnancy and childbirth are being based on good quality evidence (NHMRC 1995 and 1998a, Women’s & Children’s Hospital 1996). Haertsch (1999) examined 7 different international guidelines then current and found substantial variation in what was considered to be important components. The Royal Australian and New Zealand College of Obstetrics and Gynaecology (RANZCOG) http://www.ranzcog.edu.au, now use antenatal guidelines based on the best available evidence. Additionally many hospitals have their own protocols (Women’s & Children’s Hospital 1996). In Australia evidence-based consensus guidelines were released in March 2002 (Three Centres Consensus Guidelines on Antenatal Care Project 2001). Each guideline has a level of the quality of the evidence used assigned to it (NHMRC 1998) The guidelines are summarised below: 25 • timing and number of routine antenatal visits: timing should be flexible, numbers can be safely reduced for low-risk women (Levels I and II) • models of antenatal care : pregnant women should have written options; (Level IV) continuity of care, midwife and GP led models are safe for low-risk women (Levels I, II, III); women should have the option of carrying their own antenatal card (Level III) • smoking cessation: a range of very specific instructions on what should be offered, i.e. offer all women smoking cessation interventions that work such as a cognitive-behavioural modification model, the way questions about smoking are posed affects accuracy of responses (Levels I, II, III) • screening for Down’s syndrome: (Levels II,IV) • offer to all pregnant women, notification of screening result which should be in a format the woman understands • asymptomatic bacteriuria: all women should be offered screening and appropriate methods described to her (Levels I -IV) • routine screening for infections such as HIV, syphilis, Hepatitis C and B: (supported by mostly Level IV) • discharge planning during antenatal visits: giving women appropriate written information is suggested (Level IV) • routine blood pressure measurement: generally recommended at each visit to identify potential pre-eclampsia (Level IV), attention should be given to cuff size, positioning, (Level IV) use of Korotkof sound for diastolic measurement (Level II) and appropriate equipment (Level III) • routine weighing: is not clinically useful in screening for IUGR, macrosomia or pre-eclampsia and is likely to incite anxiety in women (Level IV) • symphyseal fundal (S-F) height measurement: abdominal palpation and/or S-F to monitor fetal growth is preferable to none (Level II) • routine urinalysis for proteinuria: not recommended in low-risk pregnancy, but is useful if hypertension identified (Level IV) • auscultation of fetal heart: no clinical benefit but reassuring to mothers and clinicians (consensus opinion) • screening for diabetes mellitus: no strong evidence to support or abandon the practice (consensus opinion) • prevention of group B streptococcal disease (GBS): routine screening and giving IV antibiotics during labour is effective (Level III) provide written information, 26 Recently the development of a national evidence-based guideline for antenatal care has been approved by Health Ministers, and Community and Disability Services Ministers. A National Working Group set up in South Australia has been given the task “to prepare an evidence-based guideline for use throughout Australia dealing with antenatal care for the healthy pregnant women.” Of relevance to this review is a section that will “identify, review and assess for inclusion any current guidance relevant to the antenatal care of Aboriginal and Torres Strait Islander women and those who live in geographically isolated communities” (National Evidence Based Guideline for Antenatal Care Scope). An Aboriginal Women's Issues Working Group has also been established with advice and input from NACCHO. This group will "review all guidelines for their appropriateness for the care of Aboriginal women" (personal communication Dr Julia Vnuk, July 2006). The work from this group is awaited with interest. Towards a model of birthing care for Aboriginal and Torres Strait Islander Health Workers Programs specific to pregnancy and childbirth within Australia: what models exist to draw on? Midwifery models There has been a worldwide emphasis on midwifery care and ongoing interest in the expansion of the role that midwives can play in the care of normal low-risk birth (House of Commons 1992, NHMRC 1996 and 1998c, ICM 2004 & Appendix 4). Randomised trials of midwifery models of care including team midwifery and birth centre care have shown increased satisfaction and reduced interventions (aside from caesarean sections which were the same) although a trend towards a higher perinatal mortality with midwife care was noted (Waldenstrom & Turnbull 1998). The National Health and Medical Research Council (NHMRC) report Options for Effective Care in Childbirth, called for widespread introduction of midwifery models of care (NHMRC 1996). Furthermore there have been calls for the strengthening and support of a more autonomous midwifery practitioner role to work in these models, including the accreditation of visiting midwife practitioners (NHMRC 1996,1998c). In addressing an important aspect of midwifery practice, the NHMRC Services offered by midwives states that the ordering of a range of pharmacological substances and tests under agreed protocols “should be considered safe practice as they are integral aspects of comprehensive care” (NHMRC 1998c p 4.). The same report highlighted the need for more Aboriginal midwives. Within Australia, where care is traditionally fragmented, midwifery models may require the strengthening and development of individual midwifery skills in a range of competencies to allow safe, effective care for a woman throughout the entire pregnancy, labour and postpartum period. 27 There is scope for midwives and AHWs to work collaboratively, as is being introduced in both Victoria and New South Wales (described below). As Aboriginal midwives remain in short supply it is likely that most teams will involve non-Aboriginal midwives and specifically educated AHWs sometimes known as Aboriginal Infant Maternal and Child health (AMIC) workers. The development of equivalent intercultural partnerships (Franks et al 1996) and cultural awareness, sensitivity and a high value placed on the unique role of the AHW are considered crucial in these developing models (Campbell 2000). The Alukura model Alukura was established following consultation with women from over 60 Aboriginal communities in the early 1980s. In1998 an external review of Congress Alukura was conducted (Carter, Lumley, Wilson & Bell 2004). A conference report gave some history and outcome data from the review (Ah Chee, Alley & Milera 2001). The Congress Alukura model was formally ratified in 1984 and provides: • • • • • • • • Comprehensive antenatal and postnatal care Gynaecological services and services of a visiting specialist obstetrician / gynaecologist A limited mobile bush service A visiting diabetic educator Healthy lifestyle education and counselling in nutrition, substance misuse and sexual health A liaison service with hospital and specialist services A transport service Home visits Since 1998 an education program for young women 12-20 years has been delivered in high schools, youth institutions and bush locations (Congress Alukura – women’s business Ah Chee et al 2001). Birthing services were provided from 1993-7 but not since June 1997. Some of the reasons given for women not birthing at Alukura are: a lack of resources and infrastructure to manage a 24-hour service; maintenance of staff skills with the relatively low numbers seen; health status of some clients; personal choice by women to use hospital and a need to keep other health providers in the region informed about the service. The need for Alukura midwives to gain Australian College of Midwives accreditation for independently practicing midwives in order to obtain visiting rights at Alice Springs Hospital was being addressed (Ah Chee et al 2001). This would allow continuity of care if transfer in labour is needed or allow the midwife to care for women in the hospital if that is their choice of birth location. In a review by Carter et al (2004) a number of reasons why birthing was not happening at Alukura were given by respondents including loss of links with Grandmothers’ Law among young women (See Appendix 5). 28 The review found that: 1. There had been a change in attitude to Alukura among Central Australian health providers from marked criticism, to Alukura being described as playing a key role both technically and in the provision of culturally sensitive birthing care for Aboriginal women in the region. 2. In the 10 year period from 1986-1995 there had been an increase in the proportion of urban Alice Springs women who commenced antenatal care in the in the first 3 months of pregnancy from 21% in 1986-90 to 33% from 1991-5. 3. In the 10 year period from 1986-1995 mean birth weights of babies born to urban Alice Springs mothers increased from 3168g in 1986-90 to 3271g from 1991-5, thus narrowing the gap between Aboriginal and non-Aboriginal babies to just under 50g. 4. In 1994, of 122 Aboriginal women from urban Alice Springs, 98% received all or some of their antenatal care at Alukura whilst 18% of rural women had some of their care there. The authors stated that the data did not establish that Alukura was responsible for the improvements, and that trends had also happened in other areas in Northern Territory, however they were not on this scale (Ah Chee et al 2001). A recent paper by Carter et al (2004) reporting on the Alukura review recommended: research funds to maintain routine data on antenatal care and birthing outcomes; a focused research project to obtain the views of younger women (16-25 years old) who comprise the highest proportion of users of Alukura; development of an outreach service in partnership with key women’s health working groups and the relevant communities; and the continuation of a visiting women’s health clinic providing services to selected communities. The Strong Mothers Strong Babies Strong Culture Program The Strong Mothers Strong Babies Strong Culture Program is a peer education program in nine remote Aboriginal communities in the northern Territory. The educators are women, selected by their community and educated to provide information about nutrition in pregnancy and develop activities to improve the nutritional status of pregnant women. They work in partnership with AHWs, nutritionists, and midwives. The pilot evaluation of 3 communities showed an increase in the mean birth weight when compared with ‘comparison locations’ (Makerras 1998). However the lack of an adequate control group and the inability of the study to control for the effects of smoking mean that the results should be interpreted with caution. 29 The Townsville Aboriginal and Islander Health Service (TAIHS) Mums and Babies Project The Townsville Aboriginal and Islander Health Service (TAIHS) started the Mums and Babies Project after concerns about perinatal outcomes and unpopular mainstream antenatal services. From 456 women who received the care, there were improvements in the numbers of antenatal visits but no changes in low birth-weight, perinatal mortality or preterm birth when compared with historical controls (Panaretto et al 2005). Funding was made available from Rio Tinto Aboriginal Foundation and The Ian Potter Foundation for a two-year pilot project. Further health department funding has now been secured. Clinics are held each morning for young families and pregnant women. A team of two health workers, one childcare worker, one driver and two female doctors provides holistic care and links with other agencies. The service provides: • • • • • Comprehensive primary health care Antenatal and postnatal care Immunization Growth monitoring Developmental screening and hearing screening for babies and children There was a rapid increase in attendance rates from 40 a month in February 2000 to 500 a month in January 2001. During that time antenatal attendance rates doubled to a median of 6 visits per pregnancy and continued to rise (THAIS 2002). The Victorian Koori Health Project As long ago as 1990 the Victorian Birthing Review chaired by Judith Lumley made recommendations to “ensure the continuing involvement of female Aboriginal health workers in the provision of antenatal and postnatal support for Aboriginal women” and “to investigate the development of education programs on birthing issues for health workers of Aboriginal background, with an emphasis on antenatal and postnatal care; and encourage the participation of Aboriginal women in the planning of health services and the establishment of different models of care” (p.76). Ten years later Koori Maternity Services Program presented a report to Victorian Aboriginal Community Controlled Health Service (VACCHO) and the Victorian Department of Human Services ‘From her to maternity….” (Campbell 2000). In the report several recommendations were made, one of which was to send health workers to James Cook University 1 to attend a specifically 1 Between 1991 and 2001 James Cook University, Townsville offered a 4-week theoretical and clinical program in maternal health care for AHWs and graduated 245 workers Australia-wide. The course was evaluated by SGRHS in 2001 for OATSIH but did not receive funding to continue. The literature review for this report includes updated material from that report (Bradley et al 2003). 30 designed antenatal and maternal skills course for health workers with a view to developing a similar course designed for Victoria. Six went and a course was developed which is in modular form, started in 2002 and continues. Koori Health has funded models for 8 communities; mostly involving AHW midwife working arrangements. Research from one of these models The Women’s Business Service at the Mildura Aboriginal Health Service has been published (Campbell & Brown 2004).Aboriginal Maternal Infant and Child health workers are involved in the care provision. Users’ views were compared with rural women Victoria-wide. One finding was that more users (Aboriginal women) rated their antenatal care as ‘very good’ although their labour care was rated less highly than the rural women. The Gumileybirra Women’s Health Unit Gumileybirra is part of Danila Dilba in Darwin. It is an Aboriginal community controlled health service (ACCHS) and was set up in 1994 to increase and improve services to women. Gumileybirra is a Larrakia word meaning “women in a group”. The Larrakia people are the traditional owners of Darwin (Hunt et al 2001). An evaluation of this service by Hunt et al (2001) included client feedback, review of attendance, antenatal care and archival material. Questions were asked about what clients, service providers and community organizations thought of the services; how data were collected analysed and used, how systems interacted with other parts of Danila Dilba; whether Gumileybirra had had an impact on the care of pregnant women; how such care could be improved and how future services for women and children might best be planned (Hunt et al 2001). There were 39 interviews or questionnaires and most women felt positive about the service offered and the staff attitudes and behaviour. The waiting time to see a doctor was the most commonly mentioned negative response. The design of the evaluation meant that it is ongoing and incorporates a number of documentary outputs such as a time line poster documenting milestones to help in story telling about Gumileybirra. Bibbulung Gnarneep (‘Solid Kid’) Project – Health in pregnancy and antenatal care “Bibbulung Gnarneep is a collaborative project that with the Derbarl Yerrigan Health Service, the TVW Telethon Institute for Child Health Research, and the Perth Aboriginal community that started commenced in 1994. The initial project comprised a series of five interviews with a population-based cohort of 270 Aboriginal mothers living in the Perth area. The data were collected when the infants were aged 6-12 weeks, with a final interview when the children were aged about two years. Information on mothers’ health in pregnancy and on the use of antenatal care was collected at the first interview. Of the 270 mothers, 98% had seen a doctor at least once during their pregnancy, 65% had at least 6 31 antenatal visits and 26% reported more than 10 visits. Pre-existing medical problems were common, with 50% of mothers reporting at least one. The major conditions reported were anaemia, asthma, bronchitis and kidney conditions. Some 76% of mothers experienced at least one significant complication during pregnancy, including anaemia, hypertension, urinary tract infections, bleeding, threatened premature labour and prolonged rupture of membranes. With such high levels of health problems and pregnancy complications, good antenatal care is necessary. A significant proportion of mothers reported they were unable to access care when they needed it, largely because of transport and distance difficulties. Around 40% of mothers said that an antenatal home visiting service would help to overcome some of these problems. In response to these results, the project team commenced a pilot research program of home visiting for Aboriginal women in the Perth area. Women are being enrolled, antenatally where possible, with visits continuing until the child reaches two years of age. Advocacy and support for the mothers are major aspects of the program. The project continues to provide feedback to the community covering many aspects of maternal, child and family health. Current work is focussing on the nutrition of the children and their health outcomes, and on important factors in the rearing of Bibbulung Gnarneep (Solid Kids).” (personal communication The Bibbulung Gnarneep Team). In conclusion, a recent literature review of interventions to improve the health of Aboriginal and Torres Strait Islander mothers, babies and young children found a lack of strong evidence of interventions on which to base practice with many studies without a control group. They called for better quality research to guide practice (Hetceg 2005). Inter-cultural research – working in partnership Aboriginal and Torres Strait Islander life is maintained by the kinship network which has roles and responsibilities that ensure the maintenance of essential protocols. Protocols exist in regard to women’s public and private knowledge in which senior women have the responsibility and authority to share knowledge with young women (Congress Alukura & Nganampa Health Council 1999). It is therefore important that protocols are adhered to during any research process or work involving Aboriginal and Torres Strait Islander peoples (Franks et al 1996). Working interculturally equivalent partnerships developed from a position of mutual respect have been found to work well. For example research that drew on the kinship network and applied interventions that arose from the protocols, was able to substantially contain petrol sniffing in two Central Australian Aboriginal communities (Franks1989, Franks et al 1996). Our evaluation occurs at a time when a number of important developments in birthing services are being offered to Aboriginal and Torres Strait Islander women Australia-wide. This new, for South Australia, model of Aboriginal birthing care is being evaluated by a team experienced in and committed to working in equivalent intercultural 32 partnership. The chief investigator is an Aboriginal researcher working in partnership with the other investigators. The importance of the evaluation lies in its ability to: 1. Document and contribute to this growing body of work that evaluates birthing programs for Aboriginal and Torres Strait Islander women; and 2. Work in partnership with Aboriginal women and give back information about the project to their communities so they can suggest or make changes where required to continue and strengthen the program. 33 METHODOLOGY The evaluation focused both on the process of establishing the program as well as outcomes from the first 50 births. The objectives of the evaluation were to: 1. Seek participants’ views and experiences of the program; 2. Obtain information about behaviours that may affect birth outcomes; 3. Document the process of establishment of the program and any barriers to its implementation; 4. Investigate aspects of the working relationship between the AMIC workers and the midwives employed in the program, and 5. Describe participants’ outcomes. demographic profiles and perinatal Seven data sets: Key stakeholder interviews In depth semi-structured interviews and focus groups were conducted with program AMIC workers and midwives, program managers, nursing unit managers, midwives, AMIC workers and members of the Aboriginal Women’s Advocacy group. The interviews covered the participant’s role in the program, their views about the establishment and value of the program, and issues with regard to inter-cultural working, and sustainability. These key stakeholders were in Whyalla and Port Augusta most people interviewed had been involved from the beginning of the program either directly or indirectly. Ten interviews were held Aboriginal and non-Aboriginal teenage women program participants’ focus groups Two focus groups were held, one with Aboriginal participants and one with non-Aboriginal teenage women from the Whyalla program. Questions were asked about their experiences of the program. Approximately 10 women participated in focus groups Aboriginal program participants’ new mothers’ questionnaires The Victorian Birthing Review new mothers’ structured questionnaire (Victorian Department of Health 1990) developed by Professor Judith Lumley and the team at the Centre for Mothers’ and Children’s Health had been modified in Victoria for use with Aboriginal women (Campbell & Brown 2004). With guidance from local Aboriginal researchers the questionnaire was further modified and piloted for use in the program. 34 Aboriginal researchers used the questionnaire as the basis of a face-toface interview. It was readily understood and acceptable to women and worked well inter-culturally, although found to be somewhat timeconsuming. Ten women participated in interviews. The questionnaire covered the antenatal, birthing, and postnatal experiences of the women. Rural new mothers’ questionnaire Data from rural respondents who completed the new mothers questionnaire (n=54) was compared with the responses of Aboriginal women program participants Program database A program database was designed and maintained by the NFWRHS to record a wide range of information such as: • • • • • • • • • • • Age, parity Number of antenatal visits Referrals in pregnancy including antenatal admission Numbers of contact with services and advice given Gestational age at birth Mode of birth Baby’s birth weight Nursery care Method of feeding Postnatal visits Referral to other services Information for 50 women who had given birth and were program participants was obtained. Supplementary Birth Records Data were collected from Supplementary Birth Records that are completed by midwives and returned to the South Australian Pregnancy Outcomes Unit where they are used to gauge pregnancy outcomes and published in annual reports (Chan et al 2006) (Appendix 6). Summaries of birth outcomes in 2004 Summaries of birth outcomes in 2004 from the South Australian Pregnancy Outcome Unit (Chan et al 2006) were for simple non-statistical comparisons where possible. Analysis Quantitative data is presented as tables using descriptive statistics. Qualitative data from focus groups was taped recorded with participants consent or otherwise notes were taken. Tapes were transcribed and transcriptions returned to participants for checking. These data were then coded against the objectives of the evaluation. Then themes were developed where there was a weight of information. 35 Study design limitations The evaluation has a number of possible limitations: 1. Although sufficient to provide demographic and outcome data the sample lacks the statistical power to draw conclusions about the effect of the program on outcomes. 2. The lack of a control group further limits the ability to draw accurate comparisons about the impact on the program on outcomes of interest. 3. The large amount of missing data suggests that conclusions should be interpreted with caution. 36 FINDINGS The findings of the evaluation are grouped around the objectives: Objective One: To seek experiences of the program participants’ views and New mothers’ focus groups Two focus groups of mothers were held, one at Whyalla High School with non-Aboriginal young women from the Whyalla teenage women’s program and the other at Nunyara Wellbeing Centre with AMIC workers and Aboriginal women who had used the program. Young women’s focus group Four young women attended the focus group. Broadly the questions asked their views about their satisfaction with the program. All the young women were referred to the birthing program through their school. They were seen individually by the midwife at a variety of locations for antenatal visits (school, hospital, own home and Nunyara). The midwife’s role was seen to involve three areas – firstly to provide information and education about the health of their baby, secondly to provide information about their own health and thirdly to provide other support such as transport. In the group the young women highlighted that they would have welcomed extra support such as that provided by the AMIC workers for the Aboriginal women in the program. The young women felt positive about their experiences with the program and program staff but felt that their experiences of the health system as whole were dependent upon the attitudes and skills of the service providers they dealt with. One participant was not satisfied with the care she received from her medical provider but was hesitant to bring the issue to the attention of the program midwife because she believed that she did not have a choice about changing her doctor. All the young women recall receiving follow up visits from the program midwife and were seen by CHS workers when their babies were about 6 weeks however, did not recall being told that their involvement in the birthing program had finished. Overall the young women’s experience of the program was positive and particular reference was made to the program midwife who was seen to 37 be “understanding, caring and did not display negative views” about the circumstances of their pregnancy and this had been important to them. Whyalla Aboriginal new mothers’ focus group Four Aboriginal new mothers who had been through the Whyalla Family birthing program and two AMIC workers took part in a focus group. A number of positive aspects to the program were highlighted: • • • • • • Some of the mothers were pleased that they were able to have the people they wanted in the labour room There had been support from the AMIC worker with appointments and transport to the hospital and clinics. The women could choose not to see own GP for the all the pregnancy care The program classes provided at Nunyara were considered to be very good The women liked the baby packages: kinbie rugs, jump suits and pads Involvement of fathers in classes with other men - “if that is what they want” was mentioned as an option for some Overall the group was disappointed that the Whyalla program had not provided labour and birthing care. They would have liked access to their AMIC worker or midwife in early labour to monitor and reassure them and they felt the lack of the presence of a birth attendant they knew during the birth. They believed this acted as a barrier to being well informed about pain relief, birth options and support for a normal birth. For the postnatal period the women would have liked more information about “postnatal baby blues,” more support from CYH and visits from the midwife and AMIC worker team for up to 6 months. Piloting of the Victorian new mothers’ questionnaire The new mothers’ questionnaire has been used extensively in Victoria for several years and covers women’s views of care in pregnancy, labour and birth, and the postnatal period (Lumley et al 1990). Responses from a total of 10 Aboriginal women were obtained. Initially three Aboriginal women enrolled in the program were contacted by an Aboriginal researcher who used the new mothers’ questionnaire (adapted by Campbell and Brown (2005) for use with Aboriginal mothers) to ask face-to-face questions of the women. The questionnaire was further modified by two researchers with guidance from a senior Aboriginal researcher. Seven more women were then interviewed by an Aboriginal interviewer. All the interviews were conducted in a place chosen by and acceptable to the woman, which was usually her home (Anderson, Champion et al 2006). The questionnaire, although lengthy, was easily understood and appeared to be culturally acceptable except when men entered the room. A need for adaptation of several questions and the inclusion of others was highlighted. Because the questionnaire focused on pregnancy, labour and after birth, 38 and used similar questions about care, some women found it long and repetitive. Others had family responsibilities to attend to. The questionnaire was acceptable to the women and worked well inter-culturally but further refining may be required before its wider use with Aboriginal women, taking the issues of time and perceived repetition into account. The sensitive nature of the questions did not appear problematic; however, when men were present the women became reticent. This relates to very clearly defined men’s and women’s realms in Aboriginal life because pregnancy and birthing is women’s business. Table 1. presents selected summaries from the Aboriginal interviews and compares them with a sample of 54 non-Aboriginal rural women who gave birth at Whyalla, Port Augusta and Port Lincoln during 2006 who have completed the Victorian new mothers’ questionnaire 6 weeks after birth (research project in progress by author GS). The sample is too small to draw statistical conclusions however of interest is that the Aboriginal women in the program were more likely to rate birthing staff as very friendly and welcoming and to know the midwife who cared for them in labour. But they were also more likely to have had someone in the labour room whose presence was not wanted; to have wanted more information in labour; and to have found feeding advice contradictory than the sample of rural women and be less likely to be breastfeeding at 6-8 weeks. Table 1: Comparisons between rural non-Aboriginal and Aboriginal mothers using the Victorian new mothers’ questionnaire * Rural In labour Birthing staff friendly/welcoming: very fairly not very Knew midwife who undertook labour care Someone there whose presence not wanted Wanted more information in labour often sometimes never After the birth Hospital stay in days (mode) Rating of care in hospital very good good mixed % n=54 Aboriginal % n=10 76 24 - 9 1 90 10 49 7 70 3 6 4 40 n=54 3 10 41 6 18 76 3 7 - 30 70 - 41 13 n=53 26 5-6 39 3-4 n=9 50 29 15 10 54 28 18 3 4 2 n=8 33.3 44.4 22.2 Feeding advice contradictory often 4 7 sometimes 14 26 never 36 67 Breastfeeding at 6-8 weeks 44 81 * Adapted from Lumley et al 1990 and Campbell & Brown 2004 4 4 0 2 50 50 25 39 Further comments from Aboriginal mothers One of the Aboriginal mothers was satisfied with the program and was pleased that the midwife visited her at home. When she first got signs of labour pains, this mother rang the midwife who collected her and took her to hospital. The midwife and the AMIC worker were at the birth. Another Aboriginal mother had not initiated contact with the AMIC workers at the time of the interview, but had been waiting for another visit since the birth. She recalled that she received one or two visits within three days but had not had visits since. This mother would like to know when her baby appointments are and to see an AMIC worker again. A third Aboriginal mother said when her doctor told her about the program she was told that she would have follow up by the AMIC worker for six months after the birth. She thought that this support would include helping with her shopping and taking her to appointments. This mother said that for the first couple of weeks after the birth it was good but she hasn’t seen the AMIC worker at all for about a month. The baby needed lots of tests and she wants to know why and would like a midwife or AMIC worker to explain things to her. Some tests were done over a month ago and she did not yet know the results. A common theme from the Aboriginal mothers who were interviewed was a desire for support to continue over a longer period than 6-8 weeks. The women had needed a lot of support after the birth. They were sad to see the time with the midwives and AMIC workers end; a feeling that was also shared by AMIC worker in their interviews. Objective Two: Obtain information about behaviours that may affect birth outcomes A number of well documented behaviours during pregnancy may affect birth outcomes. Performance indicators for the program; smoking or substance use; late attendance for antenatal care and low attendance for antenatal care were able to be collected from the program database and/or perinatal statistics forms. This section summarises data from the program database maintained by the midwives and data from the supplementary birth forms from the Pregnancy Outcome Unit (Appendix 6) and includes all women enrolled since July 2004 until June 30th 2006. Number of antenatal visits (clinical) The program supported visits and telephone calls from AMIC workers that may not have been directly associated with clinical care, although a broad approach to what constituted care was taken. Therefore data were collected under a heading ‘occasions of service’ that did not distinguish 40 between support such as transport or other issues or whether some form of hands-on or clinical care such as a blood pressure or abdominal palpation had been undertaken. Therefore, in an attempt to gain more accurate information, the number of antenatal visits for the Aboriginal women has been taken from the supplementary birth record (Table 2). When missing data are excluded, 15.6 of Aboriginal women had fewer than 7 visits (compared with 39% for Aboriginal women and 6% of nonAboriginal women in the 2004 SA data). Table 2: Antenatal visits (clinical) for Aboriginal women Port Augusta Whyalla Total % 1-6 7-15 16 + Missing data 3 12 2 10 2 11 2 5 5 23 4 15 15.6 71.9 12.5 Total 27 20 47 100 Table 3 shows the occasions of service that women were seen either by a midwife, an AMIC worker or both. Occasions of service could include follow up visits at the woman’s home, at the hospital, Nunyara Well-being Centre, Pika Wiya Health Service or other locations or transport activities and bringing women to appointments. Table 3: Antenatal occasions of service all women Home or hospital visits 1-5 6-10 11-15 16-20 21-25 25 + Missing Total Port Augusta Program Aboriginal women 4 4 1 9 2 2 5 27 Whyalla Program Total Aboriginal 1 2 8 3 1 1 4 20 Non Aboriginal 1 2 2 5 6 6 11 14 3 3 9 52 Gestation at the first visit The table shows at which trimester of pregnancy women entered the program. Only 17.3% of the total of women had their first booking visit in the program in the first trimester (before the 12th week) and 42.3% did not book until the third trimester (after the 24th week). However, the data did not include whether any of the women had previously obtained antenatal care elsewhere for this pregnancy. 41 Table 4: Gestation at first visit by trimester Pregnancy trimesters Port Augusta First trimester (before 12 weeks) Second trimester Whyalla Total % 1 9 17.3 Aboriginal Aboriginal Non Aboriginal 5 3 8 8 2 18 34.6 Third trimester (24 weeks +) 12 9 1 22 42.3 Missing data 2 - 1 3 5.8 Total 27 20 5 52 100.0 (12 – 24 weeks) Tobacco use in pregnancy (from supplementary birth record) Table 5 presents the number of Aboriginal women who were a smoker, a non-smoker or quit before the first visit taken from the supplementary birth record of the Perinatal Statistics Unit. There remains substantial missing data making it difficult to draw meaningful conclusions although a rate of smoking of 75% is calculated when missing data are excluded. Data about smoking from the program database are presented later in Table 7. . Table 5: Aboriginal women tobacco smoking status first visit* Port Augusta Aboriginal Women 14 2 - Whyalla Aboriginal Women 10 5 1 24 7 1 Missing data 10 4 14 Total 26 20 46 Smoker Non-smoker Quit before first visit * data from the supplementary birth record Table 6 presents the number of Aboriginal women who were a smoker, a non-smoker or an occasional smoker in the second half of pregnancy again taken from the supplementary birth record. The problem of missing data remains. Table 6: Aboriginal women: smoking in second half of pregnancy* Smoker Non-smoker Occasional Missing data Total Port Augusta Aboriginal Women 12 1 1 12 Whyalla Aboriginal Women 9 5 1 5 21 6 2 18 26 20 46 * data from the supplementary birth record 42 Smoking and cannabis use from visit one to visit three (from program database) Data were collected by program staff about substance use (including tobacco) at visit one (first antenatal visit, Table 7) and again at visit three (postnatal visit, Table 8), however, there remains the issue of missing data (n=13, 25%) at the antenatal visit and (n=16, 32%) at the postnatal visit. If women for whom the smoking status is unknown are excluded, the overall rate of tobacco smoking at the first visit is 56.4%. Although the sample is small it compares with the 2004 South Australian rates for Aboriginal women at the first visit of 57.8%. Cannabis use was 10.3%. Table 7: Smoking and cannabis use in pregnancy first antenatal visit* Port Augusta Program Aboriginal women 14 4 5 4 27 Tobacco Cannabis Tobacco & Cannabis Non smoker Missing data Total Whyalla Program Aboriginal 5 1 5 9 20 Non Aboriginal 3 2 5 22 4 1 12 13 52 * from program database Table 8 presents postnatal smoking and cannabis use from the program database. At the postnatal visit 65% of those for whom data are available were smokers. Postnatal data are not collected by the SA Pregnancy Outcome Unit for comparison. Table 8: Smoking and cannabis use at postnatal visit Tobacco Cannabis Tobacco & Cannabis Non smoker Missing data Total Port Augusta Program Aboriginal women 11 2 5 7 25 Whyalla Program Aboriginal 7 4 9 20 Non Aboriginal 3 2 5 21 2 11 16 50 Objective Three: Document the process of establishment of the program and any barriers to its implementation. In the interviews with midwives, AMIC workers, and key stakeholders, issues related to the establishment of the program strengths and weaknesses and sustainability issues were discussed. Themes that emerged from interviews appear in Table 9. 43 Table 9: Stakeholders themes about the program implementation • Role of the AMIC workers • Operational differences between the two sites • Issues of coordination and communication between sites • Role of the Aboriginal Women’s Advocacy Group • Positive relationships between community, AMIC workers and midwives • Sustainability and resource issues The important role of the AMIC worker The employment of AMIC workers was viewed as one of the highlights of the program by all stakeholders. The role the AMIC workers played in facilitating positive experiences for the women and “bringing respect for culture” was clearly acknowledged by stakeholders. What has worked well in the program is the AMIC workers. They are so fantastic and it has been such a positive experience for the women involved….. The midwives are supportive and are delegating and there are wonderful stories after a birth ....… about a participant having a normal delivery – it has just been what women have wanted – all women – just not only Aboriginal women. Stakeholder However, issues of adequacy of resources, including the number of hours the AMIC workers were employed, support, training and development were equally highlighted by the stakeholders. It was seen as important to develop formal mechanisms to ensure that all AMIC workers receive adequate support in their roles. Working in a team with fellow AMIC workers was seen as important for their retention. For example, the Whyalla program has only one AMIC worker which could be isolating in her role. The need to support AMIC workers clinically though education, training and development opportunities and to maximise their career pathways was noted by respondents with a general feeling that the role and responsibilities needed clarification. Whilst it is acknowledged that training is important, when workers are employed in a part time capacity, it is possible that time can be perceived to be taken up by training rather than service delivery. The service model is complex and issues were raised including difficulties with cultural brokerage and advocacy and balancing a range of skills such as clinical, data management and administration. The current workers have a wide variety of skills – that has challenges and has strengths – there is no prerequisite training and their training and development needs to be worked out……… 44 It is hard for the AMIC workers to work out … as to what the role is and the hospital staff knowing what their skills are and what to delegate. The clinical part is becoming clear but it is a new role and the relationship stuff is important. Stakeholder The AMIC workers have a wealth of experience and they are asked to go to all these meetings including state-wide meetings to give advice on a whole range of things. And they have only have limited hours. They have to be there before in antenatal care seeing women, and afterwards and attend training, and meetings they are constantly negotiating their hours. Stakeholder Operational differences between the two sites All informants spoke about the issues arising from operational differences between the two sites. These differences included funding which meant staff had not been involved in birthing and labour in Whyalla and also the number and roles of clinical staff in the program: Different pathways of care are being implemented and contributed to the difficultly in overall management of the program …..The complexities of project management have been the time intensive nature of establishing two sets of resources, clinical protocols and health promotion material, and data collection. The time this has involved has been underestimated. Regional coordination is necessary to ensure that the program is comparable in both sites. Stakeholder Some dissatisfaction was expressed about the allocation of funds, management of the program between sites and the implications this had for outcomes at the local level. I think it would help keep it strong and it would be easier to get local communities’ participation if they knew that it was local and managed here (it) would be easier to keep going. There are differences between Whyalla and Port Augusta and our workers want to work in their own way. There is a history of ignoring these differences. ……Port Augusta is stronger and there is a stronger voice ….. and this influences how we do things. Stakeholder. Coordination and communication between the sites The role of regional coordination was seen as important to ensure communication between all stakeholders, ensure support for the AMIC workers, and to clarify roles and expectations. I think that it is very important to have clear roles and responsibilities and protocols. Perhaps there needs to be service agreements drawn up and the regional view of things properly promoted. Stakeholder 45 Initially a project officer had co-ordinated the establishment of the program. She resigned and at the time of the interviews had not been replaced. The program originally had a regional focus and could work the two areas together and improve the communication between the two areas, but now this is difficult without the coordinator. Stakeholder There was, however, considerable optimism about the program and it was very positive that the midwives and AMIC workers were working well together. Informants gave examples such as the positive communication between the AMIC workers and midwives and joint training opportunities. One example was Iga Warta, a cultural weekend in the Northern Flinders hosted by the members of the Andymathanya language group of the Gawler and Flinders Ranges of South Australia Role of the Aboriginal Women’s Advocacy Group All informants were acutely aware of the advocacy group’s potential to support the AMIC workers, ensure cultural sensitivity, and share their cultural knowledge, enable community ownership, and to assist in achieving positive outcomes for the Aboriginal women in the program. The Advocacy group exemplifies local community participation, Aboriginal ownership and a means of improving access to the program by Aboriginal women. They have a great cultural knowledge and they were great contributors at Iga Warta. They know about cultural things about the birthing which they tell us about. It is a really good forum to share cultural knowledge. Stakeholder The Advocacy group are keen to play a bigger role and all the reports about the program say they are playing a very important role. Stakeholder However, there were several issues. The links between the group and overall program management are largely informal. It was reported that the group had difficulty meeting from time to time partly due to competing time demands and transport issues. People were trying to fit in the complex facilitation, legitimisation, and networking necessary to resource the group on top of their other roles. The issue of a lack of financial remuneration for participation was raised. Resources and sustainability Overall it was noted by stakeholders that it was important to incorporate the new program in the mainstream antenatal, birthing, and postnatal care for new mothers in Port Augusta and Whyalla. It was thought that 46 this would ensure adequate resources, resolution of the complexities of the management of the program, and ensure its sustainability. The financial and human resources, including the time of the Advocacy group, to develop the program to date is considerable. Good-will, in addition to program funds, has ensured its success. Resources are limited, however, respondents believed that funds to increase the hours of AMIC workers across both sites and on-call payments for the worker at the Whyalla site and re-employ an experienced project co-ordinator needed to be made available. (NB a part-time co-ordinator has been employed since these interviews) Funding is also needed to pay sitting fees for the Advocacy group members. There is a need for a project worker to do admin, project resource development, negotiation with time priorities for the AMIC workers, assisting with statistics evaluation. This then frees up the AMIC workers and helps coordinate advocacy group meetings. Stakeholder. There are usually staffing or operational issues. The midwives of the program can’t always be expected to pick up these issues as they have full work loads in addition to this program. Stakeholder. Some comments were also received about implications for sustainability. For example, in the approach to June 2005, midwives and AMIC workers were uncertain whether referrals into the program could be accepted and this had an impact on bookings and confidence in program viability. There was recognition that traditional practices did not involve men (fathers) during labour and birth but that variation existed in what the women wanted and the AMIC workers were able to support the women and their partners with their requests where possible. One stakeholder felt that male partners should be supported as part of the program, particularly in antenatal and postnatal sessions and also suggested employment of male AMIC workers. However, in the words of another stakeholder: There are men who want to be involved more and the AMIC workers work with the whole family. How you support the men is for the AMIC workers and the Advocacy group to resolve. Stakeholder. Objective Four: Investigate aspects of the working relationship between the AMIC workers and the midwives employed in the program 47 Broadly, the questions asked related to: what the work involved; what, if any were the issues in setting up the program, their own role and the roles of other workers including inter-cultural issues; whether they felt it was a good way to work together; perceived value of the program for the mothers and babies and a question about anything they would put on a ‘wish list’ that would improve the functioning of their work and the program. The midwives all provided direct midwifery care to the women and the Nurse Unit Managers (NUMs) had an overall managerial role. In the Anangu Bibi Port Augusta site the midwives fulfilled their role in provision of antenatal, intrapartum and postpartum care, and found this way of working very satisfying (ICM 2005 and Appendix 3). Skill sharing with AMIC workers and support was part of their role. Application of the program differed in important aspects between the two sites. The main differences were support and care provision offered by Pika Wiya Health Service – a well established Aboriginal health service. Also the Port Augusta site could provide care through labour and birth, enabling the achievement of continuity of carers as well as continuity of care (skill maintenance for labour and birthing are an important part of a midwife’s role). Midwives from both sites commented that Whyalla was disadvantaged in this area. We don’t have midwives in the antenatal clinic setting in Whyalla. Port Augusta does. So I started work, then there were two AMIC workers. They were very instrumental in meeting the women and bringing them in to Nunyara. And the selling point was that the midwife would be there also. Under the birthing program banner I was then able to start seeing the Aboriginal women and be able to visit them at home…Midwife A further issue for Whyalla had been the incorporation of teenage mothers into the program and the liaising role with the high school. Although a local teacher had been supportive, this had been accomplished without the benefit of any equivalent health or youth worker such as an AMIC worker. …and we also have the teenage component, there are 5 that have come through from the high school with the referrals from there for the antenatal period …but I don’t know that I’d have had time for many more of them to be honest. Midwife. Midwives issues in setting up the program Recurring themes raised by the midwives are highlighted in Table 10. 48 Table 10. Midwives’ issues in setting up the program • • • • • • • Marked differences between sites Lack of clarity about the role of an AMIC worker Confusion about accountability, lines of responsibility and practice guidelines Major role in supporting AMIC workers and sharing skill development Lack of facilities, space, infrastructure and basic equipment Negativity from hospital staff highlighted at both sites Incorporation of non-Aboriginal teenage women into the Whyalla program There were many issues involved in the setting up of the program. There is overlap with some of these across questions e.g. the issue of skill sharing and role development with AMIC workers. …and you know, what is an AMIC worker? No-one ever produced a job description per se. They would go to Port Augusta to the regional meeting, and a lot of the time I would be asking what skills can we pass on to the AMIC worker and how far can you go? And the answer I guess was it depends on the skills of the person and their qualifications - and it does vary – even with the AMIC workers from Port Augusta. (Midwife). A Nurse Unit Manager provided the following perspective: Yes, from the time it was talked about in the beginning to when it was actually rolled out, I think the focus had changed quite a lot from what the original intention was and how it was supposed to work. There has been a lot of – how can I put it? – a lot of non clarity I guess about how it should be running right from the beginning. And that is because it is something new and there have not been really any guidelines to follow. And the hardest part about it too has been the AMIC worker position, because it’s something we haven’t worked with before, it’s something new and there were no set guidelines or anything to follow…Nurse Unit Manager A midwife described the initial experience of working with the AMIC workers new to the role thus: Well yes, it’s been really good, especially the two experienced ones. But in the beginning, even with the experienced ones it was like they needed you to constantly be there with them, supporting them, it was quite intense, you really needed to look after them and make sure there was someone there each day. And we realised we didn’t have enough funding, you know, continuity with the same person there each day to look after them- the same person. Instead it would be me one day or (names midwife) another day or one of the other midwives. We have got other work commitments as well and it’s not like all we have to do. Midwife. 49 The issue of space was paramount in the beginning at both sites as well as problems with some of the hospital midwifery staff. In the early days I think it was, the difficulty was with the mid staff, there were lots of negative comments about a new model of care, they seemed threatened, didn’t want it to work. Then there were problems with infrastructure. The biggest concern was to have our mobile phone to be on call, how can we do it without a mobile phone? And then we had to sit in the birthing suite at the desks there, and there was no privacy for us or for the women. It was really uncomfortable. And you’d be asked to do things all the time, like ring the doctor, put that test through all that sort of thing, and the families would be there, sometimes 16 family members and us, that’s the midwives and AMIC workers….then they gave us a store room to work in, with the computer in there and no windows, no light…so yes, I think the lack of infrastructure has been a difficulty. And the midwives don’t like us being there on the ward, and we don’t like it either. Midwife. And from the perspective of one of the NUMs: I think we just need to …at the moment there is not a lot of contact between the ward staff and the AMIC worker. I think that needs to be more closely linked. We have had two, we were training up the first one and she left and now we have a second one and that’s still occurring. We are still at that first stage, getting everyone comfortable, so we haven’t got to that stage where she is able to work really well with the other midwives yet. Nurse Unit Manager. All the midwives agreed that an important part of the program was the two-way learning that occurred and that a large and ongoing part of their role was sharing of their specialised midwifery skills and knowledge with the AMIC workers. Well its certainly mutual for me, they are great. They know where and how to find people, etc where and when and how long they have been in town and you know, all that sort of stuff, its fantastic. They have been great about developing their clinical skills, one of the big learnings is - you know, we have had a lot that are really high risk and we have had to learn. Some we don’t take on because it’s just too much, you know, mental health issues…. that sort of thing. We discuss it as a team who we take on that sometimes the AMIC worker will say well I can’t work with that one - family (kinship) etc and we respect that. They still get the care from the community midwives who ever they are and that’s just the way we have to do it. And it’ s very good for the community midwives to be working alongside and networking with the AMIC workers and the program…..its a great way to work, and everyone is learning. Midwife. 50 …very committed - don’t want it to fail, make sure their clinical skills and competencies are up to date - so they re a happy member of the team. Midwife. One midwife described the clinical skills of the AMIC workers very positively: Oh they are fantastic. Two of the girls are very experienced, and we wanted to employ this a brand new role in the hospital, I think in the beginning we had the vision that they could move through their role you know bridge that gap between community and hospital, but that didn’t happen. The midwives were: ‘Well what are they supposed to do? How do we know exactly what skills they have got?’ You know there was a lot of that sort of negative stuff with the hospital staff. Some of them were very good but some were not. And there was a lot of difficulty with them standing around without things to do, and they felt shame, but that’s changed now because the AMIC workers are becoming more confident. Two of them are really on their feet now. Really (names AMIC worker) is as good as a midwife no, really, she knows when the tests are due all that sort of thing. I can say to her “can you look after this girl” and I know there is nothing she doesn’t know, she’s as good as a midwife….she knows what’s due for when, and you know what’s normal what’s not …she knows when to go and get some help so I could easily go on holidays and she will contact the doctor if she needs to and I know that girl will be well looked after…they are fantastic. Midwife. All the midwives interviewed agreed that this was a rewarding and effective way of working together and were clear that the program was of value to the mothers and babies. Of particular note were increases in antenatal attendance that were achieved by the AMIC workers and their ongoing links with the women and different Aboriginal community members. This was particularly rewarding if the kinship links were strong: I have been to beautiful births with the mothers, the grandmothers, the aunties and the kids, beautiful, not all the time but we have had some - and the girls that have got it are the births that do go right. Midwife. Table 11 highlights the themes that arose when the midwives spoke about working in partnership with the AMIC workers. 51 Table 11. Midwives’ themes about working in partnership with AMIC workers • • • • • • • • • Commitment to work inter-culturally Development of relationships took time Good experiences and outcomes when family structure is strong Challenges associated with the AMIC worker’s role AMIC workers social, cultural and community knowledge and connections crucial to the women’s attendance and program success AMIC workers developed excellent clinical skills with increased experience Equality in team decision-making and strong AMIC role in client selection Personal satisfaction high Ongoing two-way learning with AMIC workers In relation to possible improvements there were several suggestions needed to improve the functioning of the midwives’ work and these differed between the clinical midwives involved in the program and the NUMs. Midwives working on both sites reported a lack of working and storage space to undertake their duties and maintain the confidentiality of their clients, and this had made their work frustrating at times. There was nowhere for us to go. We shared a room with so many others and then the birthing program started there were then five more people in the room. ….space is a big issue, perching on the desk in the birthing suite no privacy 5-6 people using one computer putting in the data. .. that has been a challenge - it’s all right if I keep on top of it - but often there is such a crowd in there. (Eventually given) a store room with no phone, ventilation or window, 4 ft by 4 ft. Midwife. In response to the question about whether they felt the program was helping the mothers and babies the midwives were in agreement. Well we just did a presentation stats show. Our key performance indicators (KPIs) are: increases in babies weighing over 2.5 kg, decreases in smoking, increases in breastfeeding and increases antenatal visits to above 7. So we have been really successful in that, because of the contacts and knowing where to find the girls, and encouraging them to come and look at the birthing suite and the hospital, and getting to know who their care workers are. We have had 27 births, 30 something in Whyalla. And now we have another year’s funding we are just steamrolling now! Mainstream services were not working so we have made huge increase in the numbers coming for their antenatal visits its really improving. …..a great deal of enthusiasm. They get given pictures of their midwife and AMIC worker. We have 300 births a year and 100 are Aboriginal so we still have a lot more to get. It’s wonderful when 52 the grandmothers are there and it’s done traditional way, those ones do really well. It’s so rich and fulfilling - but what is also great is that they want their midwife. Midwife. A NUM was impressed with the program: Well there have already been changes, with the babies’ birth weights and follow up, I mean the Aboriginal girls may still be high risk clients, but they are certainly monitored and have more antenatal visits. We used to get girls coming in labour who had never seen a doctor in their pregnancy. We are getting less of that now. And one of the good connections is that the AMIC workers are Aboriginal they know what goes on in the community so if someone new comes in from say Coober Pedy – well, like the community knows – and they hook them in. Nurse Unit Manager. One midwife felt that there were certain inequalities related to the program supposedly being “AMIC worker –led” but the AMIC workers were paid less than the midwives and did not, like the midwives, get paid for being on call or for attending births, and that getting back time off in lieu due did not always happen. When questioned about what would help sustain and improve the program there were a number of themes that arose in both sites that are summarised in Table 12. Table 12. Midwives’ ‘wish list’ to sustain and improve the program • • • • • • A space in which to see the women when they visit the hospital or clinic Adequate storage space for midwifery records to maintain confidentiality Basic equipment for exclusive use of the program Cars allocated to the program for home visits More secure funding arrangements Clerical support for data management Additional comments for one midwife recently employed in the program were: I would like to know more about the culture of their clans so we can incorporate it into the system, the role of grandmothers etc. It’s very good when you see the mother feeding the baby doing it the proper way for the culture, very interesting to learn. Some people they tend to be culture sensitive and they think that it’s not for us, it’s for those people, but we need to learn about these things to be of assistance and in our work. I’d like more input of the elders, of the grandmothers so we can have their knowledge, that would be good… otherwise you feel left out. Midwife. 53 One midwife felt that the benefits of antenatal care were over-rated and that other more basic issues were more of a priority in the women’s lives. The role and views of the AMIC worker Five AMIC workers were interviewed by an Aboriginal researcher four of whom agreed to be audiotaped. The questions followed a similar format to those sought from the midwives: what the work involved; what, if any were the issues in setting up the program, their own role and the roles of other workers including inter-cultural issues; whether they felt it was a good way to work together; perceived value of the program for the mothers and babies and a question about anything they would put on a wish list that would improve the functioning of their work and the program. The scope of the role was very broad. An AMIC worker described the work she undertook in her role thus: We get the girls to come up to the hospital if they want to have their antenatal screening up there or wherever they want to have it done we do the antenatal check on them - and so we have to go out and arrange that with the girls and bring them into the midwives…. the midwives are doing mainly the antenatal screening on the girl, but us AMIC workers, well me, I am trained in that area so I also do the checks along with them. (The midwives) mainly do the antenatal screening and a bit of education and information one to one.… also we have come across a lot of girls that need support in housing and they need support in finances and some of them don’t have food in the house so we are referring them on to Salvation Army and so its looking at it as a holistic approach….and we have meetings - a case conference meeting every fortnight on a Tuesday. The AMIC workers and the midwives get together and we case conference about our clients. But we do all the running around and getting girls and bringing them up …. AMIC worker Another when asked what she did in her AMIC role replied: What don’t I do! Basically support – there’s about 20 Aboriginal women that we get work for the year and we get given a caseload of women that we take care of. So for me its wherever those women are and I go out and support them as much as possible for their antenatal care and antenatal education you know helping them with anything they want to know during pregnancy. Making sure that their bloods are being done, all those sorts of things, and being a support for them during their birth, because the majority of the girls I’ve looked after I have been at the delivery there. So when they are ready to give birth to their baby… its that birth support as well. After that – 54 postnatal support as well, you know, help them with breastfeeding, and teaching them how to breastfeed and like referral too.. They might not have much because its their first baby, they want their own house, after living with you know, their family, they might want to get a house organised that sort of thing, help them with that, furniture…, we use all the services that I can here in Port Augusta, and then, like when they are referred on to CYH at about 8 weeks. Making sure they get to that first baby’s health check, making sure that we talk about contraception you know, what sort of thing they might want to have and organising that with whoever, and then making sure they have the check up with their doctor that everything is ok. So it depends on the individual women what they want. If it’s a more traditional woman then we make sure we look at you know all the things that we can offer which language group they belong to - but if not its support with what ever that woman wants really. AMIC worker. The referrals could come from a number of sources: Well it can be as early as 6-8 weeks as soon as they know- if the doctor refers them on to us - or often we know, because of working in the community we find out who’s pregnant just from grapevine. Other times its referrals from community health service they come and see Dr...(specialist obstetrician), or they come and see one of the health workers here, so we get referrals for them. Referrals from the midwives who are working on the wards there or are working in the antenatal clinics. The other clinics too, because not all our women come to Pika Wiya. We look after them so they can come from these other clinics and these other doctors too. It had been important to be able to get to know the women and establish relationships from the time of booking, during the pregnancy, to be there for the birth and the postnatal care: It’s all to do with you know, you build up that relationship too. So that’s really important - like you need to build up that relationship and that’s how we try to get the girls, as early as possible, so we can spend a lot of time with them antenatally, so then they build up that rapport and trust….and they ask: “Are you coming for my birth?” They look for you and so that’s really good. Yeah, the girls on the birthing program when they come in and we talk to them we see if they are interested in being in the program. What we tell them is like your AMIC worker and the midwife you will have at your birth. All the girls that I have looked after I have been there for their birth and its really great. It’s emotional but its and its like it’s like one of your own, its like your sister or one of your own family members so, you get really emotional. Yeah, you get excited and you get sad, and so, mixed emotions, but yeah… and one girl I had who delivered about 3 weeks ago, I didn’t go up 55 there early, like when she was in early labour, but the midwife, she was telling me like they’re asking for you ‘is (names AMIC worker) coming up?’ So yeah, I went up for that. AMIC worker Being able to communicate with women for whom English was not their first language or who did not speak English at all was of considerable importance. One AMIC worker was fluent in five languages with Pitjantjatjara being her first language. The following conversation between the Aboriginal researcher and one AMIC worker highlights this AMIC worker: “The ladies come to me and tell me (in their own language)” Aboriginal researcher: And then you interpret that language with the doctor? AMIC worker: Yes, the doctor and the nurses. Other AMIC workers would ask for this AMIC worker: ……and if there’s language barriers well you know we use her because she speaks 5 different languages…. finding out from the group and the different family they might have... finding out what language group they are and support them that way. AMIC worker Another AMIC worker could usually make herself understood: We get girls that come down from the Lands and you know just saying little words like (says a word in language) they feel comfortable straight away you know as soon you start using those words, especially if they don’t speak much English. Yeah. But I’ve come across like.. because we don’t usually cover girls from Community X – there was this Community X girl in hospital and she had her friend next to her so the X one was having a lot of trouble with the midwives, and there was another girl, also an X girl next to her who could speak good English, like this other girl could not really speak or understand properly, so what I have done is like I used her as a middle person, like as an interpreter. AMIC worker. Being able to advocate for Aboriginal women in a hospital setting was a crucial part of the role. Sometimes an Aboriginal woman might feel too shy or shame to seek the help she needed with a non-Aboriginal staff member: 56 Yeah well I had an experience where one of the girls that was my client in the program, she had twins, and I come across her and she was in the hospital and she had her twins up there and the twins were in there for about a month, before they could go home, but anyway she came up there and one of the twins started crying and he was hungry and this mother, she was like really embarrassed to go and talk to the nurse and tell them about the baby being hungry, so shame she was she said Oh you know and I came along at the right time and I said ‘don’t be shame, you know’ so I went along to the midwife that was looking after her and I asked her and I said like ‘she’s a really shy person’ and asked to make a bottle for her baby, so she said ‘no I’ll deal with her’ so she went in and said oh she was going to show her around where all the bottles were and that and so that was really good. Yeah, and a lot of the girls that you come across like that, they don’t want to talk to the nurses, and so they tell you, and they want you to go and talk to the nurses, so yeah. …AMIC worker Or in the words of another AMIC worker: …they just come up to us on the ward, and even though we look after a certain amount of women, because your face is up there on the ward all the time, often they ask questions. This young girl she might need help and she can’t talk so we come in as you know, a cultural broker, just to help them young girls they feel more comfortable talking to us and whatever might be happening there and we try and deal with it with the midwives. We do a lot of that, but that’s not even part of our work that’s just being up there, we do a lot of that as well. AMIC worker Being able to speak up with confidence was described when working with or alongside mainstream services: I think its important to know how to deal with mainstream services they don’t know our way and sometimes they push things the other way, that they want them but I think its important to have strong Aboriginal women working in the program so that we can stop and say ‘no, hang on a minute, that not the way to do it that’s not the way we do it, when it comes to our women, this is how it should be done.’ AMIC worker When asked whether this was a good way of working together a great deal of enthusiasm was voiced: Oh definitely, I think non-Aboriginal people and Aboriginal people working together is a good way. Non-Aboriginal people can’t offer the service without us, but we can’t do it without them either. You know, the clinical knowledge that we learned from the midwives, you know, without that, we couldn’t do our work properly. But the same thing, they couldn’t do it without us because they need our 57 cultural knowledge, they need to know the way we deal with people. And I think the good thing is this; they teach us the clinical way and we teach them the cultural way. So it just works really well like that and in the partnership, between the hospital and Pika Wiya Aboriginal Health Service. That’s the way it should be that’s the way it can work, you know. You feel like you can make a difference for our people if we work that way. AMIC worker One AMIC worker felt this model of working together should be introduced everywhere: I want our workers, AMIC workers to be everywhere, not just here. I think Aboriginal health workers should be working with midwives everywhere, and you can really see the difference it makes, you know, for women and babies. One of the things that we set up this program for was that we wanted to increase babies’ weights. If they don’t look after themselves in pregnancy babies can be small…. I think we have proved that, because the amount of antenatal visits that women go to now. We talk about health and nutrition and things like that, smoking, drinking, all them sort of things that affect babies during pregnancy. It’s increased the birth weights with a lot of our babies so it’s been a really good thing. And breastfeeding, how important that is…We promote that because it’s just you know, all of that, all of that stuff. Information, I think a lot of our girls never had that information, and they didn’t know that these things happened, so the more people are talking about it- the program set up like that – Aboriginal health workers doing that work, with our girls it’s got to improve for the women and for the babies. AMIC worker Mothers could be more likely to bring up issues when alone with an AMIC worker: Oh well they’re a lot more open with us. Often we find out after they have been brought in for the antenatal check with the midwife and we are driving them home and then its this, this and this in the car, so sometimes we have to do things on the side so we go back to the midwife and say she might have been a little bit shame and we bring it up somehow like that……… However this changed when the women got to know the midwives and saw the AMIC workers and midwives working in partnership: But after a while though, those girls start to feel comfortable with the midwives as well, because they can see us working together with the midwives. And because there is only 4 midwives in the program, they are easy to get to know, they are great midwives, they are easy to talk to and they have worked with Aboriginal people before and they are willing to listen to what we say and 58 they work along with all of us. So that’s why then I talk about team they’re our team as well. AMIC worker The following conversation between the Aboriginal researcher and an AMIC worker was recorded: Aboriginal researcher: Well are all you mob working with babies? Yes that’s right and there are so many things that we are learning as well, like AMIC workers, we go back to the midwives and say ‘what’s this, what’s this about?” What does this mean? And they’re willing to give us that information and help us … AMIC worker Researcher: Any young mothers that are worried about what the doctor has said to them you know I don’t understand it or my BP or ….? Yep yes, like we do a test for gestational diabetes and some of them say what does this mean does this mean I have got diabetes? And sometimes the doctor can say things and they don’t follow it through and they want more information. And that’s where we come in, and explain things, this is what it’s about, it doesn’t mean you’ve got diabetes for the rest of your life. It just means during pregnancy you gotta eat right and look after yourself but once baby’s born it you know that diabetes just goes, because during pregnancy your pancreas is working harder and you are getting more insulin happening and it shows up high so often you have to explain a little bit more information that the doctors don’t ……. AMIC worker. Key informants identified their perception of the positive relationships and sharing of knowledge and skills between the AMIC workers and the midwives as a key strength of the program. I feel there has been a changed attitude and greater understanding of the non-Aboriginal midwives and staff about the challenges faced by Aboriginal women. There is increased respect and understanding. Stakeholder Another strength of the program was the fact that it was designed to address the needs of the women. This program has one of its criteria high risk and younger Aboriginal women, and it does very well with this. A lot of alternative birthing programs take low risk women. …..most of the young women on the program are very vulnerable emotionally and the program …… is able to sustain good outcomes for the women. Stakeholder 59 Another identified strength was that the program is women and culturally focussed, with workers providing assistance to both the woman and her family in a way that is culturally appropriate and ‘not just medicalised.’ Having an Aboriginal worker assist families in an holistic way, outside of the regimentation of the ‘nurse’ role. This meant that AMIC workers could assist with all the multiple issues that the family experienced, not just the participant, including housing, financial issues, schooling, benefits etc. Stakeholder. Other perceived benefits included the profile and awareness of the program within the local communities. AMIC workers and elder women from the advocacy group were known and respected in their communities. Objective Five: Describe participants’ profiles and perinatal outcomes demographic This section summarises data from the program database maintained by the midwives and data from the supplementary birth record from the Pregnancy Outcomes Unit completed by all midwives in the state (Appendix 6). The data include all women enrolled since the introduction of the program in July 2004 until June 30th 2006. The Pregnancy Outcomes Unit in 2004 reported 484 Aboriginal births (2.8% of 17,522 births reported that year) and where possible, simple comparisons have been made between women in the program and the SA data (Chan et al 2006). A total of 52 women were registered in the program - 27 Aboriginal women in Port Augusta, 20 Aboriginal women in Whyalla and 5 non-Aboriginal women registered in the teenage program in Whyalla. There was one miscarriage at 18 weeks. The sections where data are missing are highlighted in the tables. Number of births There were 51 births across the two sites with one perinatal death at 25 weeks gestation Table 13. Table 13: Number of births by program site Port Augusta Program Aboriginal women Live births Perinatal death Total 25 1 26 Whyalla Program Total Aborigina l 20 20 Non -Aboriginal 5 5 50 1 51 60 Maternal age Table 14 provides a break down of the maternal age of participants and shows the most commonly reported age (mode) of the Aboriginal women enrolled in the program to be between 20-24 years (n=19, 37.2%) and compares with 30.2% (also the mode) in SA in 2004 Aboriginal women and 15.1% for Caucasian women (Chan et al 2006). The most commonly reported age for all women who gave birth in SA in 2004 was 30-34 years. Four out of the five young non-Aboriginal women were aged 15-19 years and one was over 20 years of age. Table 14: Maternal age of all participants 15-19 20-24 25-29 30-34 35-39 40-44 Total Port Augusta Program Aboriginal women 7 9 7 2 2 27 Whyalla Program Aboriginal 2 10 5 2 1 20 Non-Aboriginal 4 1 5 13 20 12 4 1 2 52 First and subsequent births (parity) In total 25 (50%) of the all the women studied gave birth their first live baby in care of the program (Table 15). For the Aboriginal participants the number having their first baby was 21 out of 45 (47%) Table 15: Parity of all participants First baby Second and subsequent Total Port Augusta Program Aboriginal women 13 12 25 Whyalla Program Aboriginal 8 Non Aboriginal 4 25 12 20 1 5 25 50 Method of birth When 5 missing births are excluded (Table 16), twenty eight of all the women (54.9%) had a normal vaginal birth, compared with 56% of South Australian women in 2004 (Chan et al 2006). Nine women had an elective caesarean section and seven had an emergency caesarean (combined 31.4% the same as the population rate of 31.5% from the SA data). 61 Table 16: Method of birth Normal vaginal Elective LSCS* Emergency LSCS Total LSCS Instrumental Missing data Total Port Augusta Aboriginal 12 5 6 11 1 2 26 Aboriginal 13 3 4 4 3 20 Whyalla Non-Aboriginal 3 1 1 1 5 % 28 9 7 16 2 5 51 54.9 17.6 31.4 3.9 100 * LSCS = lower segment caesarean section Birthweights Six birthweights were not recorded. Of those available, there were 31, (61%) babies born with birthweights of 2500g or above. Four out of five of the teenage non-Aboriginal women gave birth to babies above 2500g. Excluding missing data there were 9 (20%) low birth weight babies, 7 (17.9%) of whom were Aboriginal babies. These figures compare with low birth weight of 8.7% in all SA births in 2004 and double that for Aboriginal babies. There were two very low birth weight babies (less than 1500g) (3.8% versus SA 1.3%) one of which was a neonatal death (Table 17). Table 17: Birthweights <999 1000-1499 1500-1999 2000-2499 2500-2999 3000-3499 3500-3999 4000-4499 Missing data Total Port Augusta Program Aboriginal women 1* 1 3 3 10 1 4 3 26 Whyalla Program n=51 3 Non Aboriginal 1 6 3 4 1 3 20 2 1 1 5 11 14 6 5 6 51 Aboriginal 1 1 7 * neonatal death Apgar scores The Apgar score is a numerical scoring to evaluate the condition of the baby at one minute and at five minutes after birth (scored out of a maximum of 10 points). Six babies born to Aboriginal women had Apgar scores of less than 7 at one minute (excludes missing data n=8)(Table 18). All babies had Apgar scores of seven or more at five minutes (excludes missing data n=8). 62 Table 18: Apgar scores Port Augusta Whyalla Aboriginal Aboriginal Non Aboriginal Total % 6 17 2 25 3 12 5 20 1 3 1* 5 10 32 8 50 24 86 23 2 25 15 5 20 4 1* 5 42 8 50 100 At 1 minute <7 >7 Missing Total At 5 minutes <7 >7 Missing data Total 100 * unplanned homebirth Excluding missing data, seven (14.9%) births in the program were preterm (less than 37 weeks completed gestation) with 6 of these born to Aboriginal women (Table 19). Table 19: Gestation at birth Port Augusta Program Aboriginal women 36 and under 37 38 39 40 41 Missing Total 4 3 5 8 4 2 26 Whyalla Program Aboriginal 2 3 6 2 5 2 20 Non Aboriginal 1 1 1 1 1 5 Total 7 7 11 11 10 3 2 51 % 14.9 14.9 23.4 23.4 21.3 6.4 100 Method of Feeding Table 20 shows the method of breastfeeding at discharge from hospital. Amongst all of the women for whom data were available, 35 (87.5%) were breastfeeding at discharge from the hospital and 31 (87.5%) of the Aboriginal women were breastfeeding at hospital discharge. Table 20: Feeding method at discharge from hospital Port Augusta Breastfeeding Artificial Missing Total Aboriginal 13 3 9 25 Whyalla Aboriginal 18 1 1 20 Non-Aboriginal 4 1 5 Total 35 5 10 50 % 87.5 12.5 100 63 Table 21, shows feeding method at the last postnatal visit at 6-8 weeks that indicates that 52.5% of the Aboriginal women were breastfeeding and one teenage woman was still breastfeeding. Table 21: Feeding method at last postnatal visit n=50 Breastfeeding Artificial Missing Total Port Augusta Program Aboriginal women 14 7 4 25 Whyalla Program Aboriginal 6 12 2 20 Non Aboriginal 1 4 5 Total 21 23 6 50 % 48 52 100 Postnatal occasions of service are presented in Table 22. Excluding missing data for 10 Aboriginal women, 42% of the women received 6-10 postnatal visits and 8 (20%) received more than 10 visits. Table 22: Visits or phone calls up to 6-8 weeks 1-5 6-10 11-15 16-20 21-25 25 plus Missing data Total Postnatal occasions of service Port Augusta Program Aboriginal women 4 11 1 1 8 25 Whyalla Program Aboriginal Non Aboriginal Total 6 4 6 2 2 20 2 2 1 5 12 17 8 2 1 10 50 The next section discusses the findings and summarises the implications of the main findings. 64 DISCUSSION AND IMPLICATIONS The evaluation revealed challenges in establishment of the program and some dissatisfaction that the Whyalla site appeared less well resourced. Longer-term resources would enable what has been achieved to be consolidated and could provide greater access to the pregnancy, birthing and postnatal care provided by the AMIC worker / midwife model in Port Augusta. For example, many Aboriginal people from language groups in remote communities within the NFWHS region such as the Anangu Pitjantjatjara Lands, Oodndadatta, Coober Pedy or the Flinders Ranges have family connections in Augusta may therefore present there for antenatal care. In its present form, the program is not designed to include these women although small numbers have received care (personal communication Program Manager). Although low in number, teenage women in the program were positive about forming a relationship with a midwife in the program. The establishment of an equivalent teenage-focused model may be designed specifically to meet young women’s needs as they stated that they would have welcomed extra support with transport and other issues such as that provided by AMIC workers. The sample of 45 women, although small, is nearly one tenth (9.4%) of the 484 Aboriginal births recorded in 2004). Comparisons of birth outcomes between this group and all Aboriginal women are difficult to make because, to secure eligibility to enter the program, these women went through a selection process to identify risk factors. Because the effectiveness (sensitivity and specificity) of the screening process has not been documented it is difficult to determine whether women in this study were at greater risk. Another factor to consider when looking at the birthing outcomes is that they vary between metropolitan based Aboriginal women and those from regional or remote locations. In spite of significant gaps in the data many outcomes for this group appear comparable with data for Aboriginal women South Australia wide in 2004. The sample was too small to ascertain perinatal mortality. There was a high prevalence in this group of late booking for antenatal care. Only 1 in 6 had booked for their first antenatal visit in the first trimester, and 2 in 5 did not attend until the third trimester. It is unclear whether any of the women received care elsewhere although this would be expected to be written on the hand-held pregnancy record now in wide use. Nevertheless, Aboriginal women in the program were more likely to have had more than 7 antenatal visits compared with the SA data for 2004 (15.6% versus 6%). The rates of smoking in pregnancy and babies classified as low birthweight were also comparable with the SA data. Whether the increased antenatal visits provided by midwives and AMIC workers in the program (both clinical and supportive) can translate to improved overall outcomes will require longer term follow-up. The issue of 65 whether an antenatal visit was clinical (hands-on) or supportive was confusing and not specified in the program database. This needs clarification to be able to assess any potential advantages of both types of visit. Although the program design is complex, qualitative findings from the interviews demonstrated that inter-cultural partnerships between the AMIC workers and midwives do exist, that they are mutually satisfying and that they have provided opportunities to work “both ways”. The recognition and development of equivalent inter-cultural partnerships between Aboriginal and mainstream workers is a best practice model that has been successful in other settings (Franks et al 1996). Building on these relationships will be vital in sustaining the program. Although it was clear that the AMIC worker is pivotal to the success of the program, an expectation for the program to be “AMIC-led” may be a misnomer in view of the emerging two-way partnership model that the evaluation revealed. It is also important to acknowledge that along with working in the program, AMIC workers, as members of their communities, have obligations and priorities within their own family systems. As AMIC worker role continues to emerge, it will need further support, development and acknowledgement. The Aboriginal Women’s Advocacy group has a strong role in contributing to understanding of working both ways and thus moving towards good birthing practices for healthy Aboriginal mothers and babies. Formal links between the Advocacy group and program management need to be strengthened and sustained and out of pocket expenses acknowledged. Advocacy group members were keen to strengthen the cultural support provided by the program by working in collaboration with AMIC workers to work directly with Aboriginal women, especially those with restricted family support. The substantial amount of missing data is disappointing. Clearly, a full data set is crucial to obtain an accurate demographic picture of women participating in the program. Only then can the program be accurately monitored for any improvements in clinical outcomes. The achievement of more complete data sets from all women, particularly the program performance indicators, should be a long-term aim especially if the program is to be introduced more widely. The next section suggests eight recommendations to progress and strengthen the Regional Family Birthing and Anangu Bibi Program. 66 RECOMMENDATIONS 1. The Anangu Bibi AMIC worker/midwife partnership model be incorporated as a central component of the care offered to any Aboriginal women presenting for antenatal care in Whyalla or Port Augusta to increase the program’s sustainability. 2. That the feasibility of developing a model of care for teenage nonAboriginal women equivalent to the AMIC worker/midwife partnership be considered. 3. As the AMIC worker is pivotal to the success of the program we recommend that the role be further acknowledged, resourced and developed. Strategy: Support AMIC workers to participate in an established accredited course that leads to a professional qualification. 4. Set aside funding for increased AMIC worker hours and further employment opportunities for more AMIC workers from different language groups with links to the Spencer Gulf region in consultation with the Aboriginal Women’s Advocacy Group. 5. Develop processes to enable AMIC workers to continue in the care of mothers and babies beyond the 6-8 week program cut-off point. Strategy: Encourage working partnerships between AMIC workers with the CYH Indigenous Culture Consultant to enhance continuity of care for Aboriginal mothers from a range of language groups. Strategy: Investigate the feasibility of employment of AMIC workers in the universal home visiting program of the Child and Youth Health so they can continue to provide continuity of care. 6. That members of the Aboriginal Women’s Advocacy Group be provided with further opportunities to directly support mothers and families in the program. Strategy Legitimise formal links between the Advocacy group and program management by funding participation fees. Strategy Strengthen the cultural support provided by the program through linking Advocacy group members to those with limited family support and to women enrolled in the program from outside Port Augusta and Whyalla. 7. That adequate equipment, space and infrastructure be provided at both sites for the AMIC workers and midwives who work together in the program. 8. To refine the program database in consultation with the AMIC worker and midwife users to simplify the management, collection and analysis of outcomes and performance indicators and further establish any clinical benefits of the program. 67 BIBLIOGRAPHY AND REFERENCES AbouZahr C. Royston E. 1991. Maternal Mortality: A Global Fact Book. World Health Organization, Geneva. Abbot K, Fry D, Ahmat C, Elliot R. 1998. Aboriginal Health Workers Competency Standards, Career Structures and History. AHWs Fitting in with the National Competency Standards and new Career Structures. Reprinted from the CARPA Newsletter November 98. Ah Chee D, Alley S, Milera S. 2001. Congress Alukura – women’s business. Proceedings of the 4th Australian Women’s Health Conference, Adelaide Australia. 19-21 February 2001:167-174. Anderson G, Champion S, Stamp G, Zanet P, Paige K, Coulthard K. 2006. Piloting the new mothers’ questionnaire for use in the Anangu Bibi birthing family birthing program in rural South Australia. Optimising Impact: General Practice & Primary Health Care Research Conference 57 July 2006. Perth Convention Centre. Poster abstract p. 214 Conference proceedings. Awarded best poster. (Appendix 7). Australian Bureau of Statistics (ABS) 1996 Census. http://www.abs.gov.au/ Australian Bureau of Statistics (ABS) & Australian Institute of Health and Welfare 1997. The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples. AGPS Canberra. Australian Bureau of Statistics (ABS) & Australian Institute of Health and Welfare (2001). The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples. AGPS Canberra. Australian Bureau of Statistics 2006. 4715.0 - National Aboriginal and Torres Strait Islander Health Survey, 2004-05. Released 11/04/06 http://www.abs.gov.au/ausstats/abs Australian Bureau of Statistics 2004 Births, Australia 2003. (3301.0) Canberra: Australian Bureau of Statistics Australian Institute of Health and Welfare 2000. Australia’s Health 2000 AGPS Canberra 68 Barker DJP. 1994. Mothers, babies and diseases in later life. Pub: British Medical Journal, London. Barker DJP. 1992. Fetal growth and adult disease. British Journal of Obstetrics & Gynaecolgy, 99: 275-282. Barker DJP, Godfrey KM, Osomond C, Bull A. 1992. The relation of fetal length, ponderal index and head circumference to blood pressure and the risk of hypertension in adult life. Paediatric and Perinatal Epidemiology, 6: 35 Barker DJB, Osmond C, Forsen TJ, Kajantie E, Eriksson JG. 2005. Trajectories of Growth among Children Who Have Coronary Events as Adults. New England Journal of Medicine, 353: 1802-1809. accessed 26th October 2005 http://nejm.org.cgi/content/short/353/17/1802 Bennett RV, Brown LK. (1993). (eds) Chapter 43 Vital Statistics, In Myles Textbook for Midwives. Churchill Livingstone UK 686-694. Bibbulung Gnarneep Team 2001. Printed in: The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples Australian Bureau of Statistics Catalogue no 4704.0 AIHW catalogue no IHW6 Boles C, Stuart-Butler D, Foale A. 2005. The birth of a new service. Oral presentation at 8th National Rural Health Conference, Alice Springs, March 2005. Bradley H, Blue I, Stamp GE, Weetra C et al 2003. Evaluation of James Cook University Maternal Skills and Antenatal Transfer Program. Funded by OATSIH and the Dept of Health and Aged Care. Spencer Gulf School of Rural Health , Whyalla. Briscoe G. 1974. Chapter 4.4 The Aboriginal Medical Service in Sydney. In Hetzel BS, Dobbin M, Lippmann L, Eggleston E. (eds). Better Health for Aborigines? Report of a National Seminar at Monash University. University of Queensland Press. Buckskin M. 2004. Aboriginal Births in South Australia. Presentation in Workshop: “Healthy Aboriginal Mothers and Babies: Improving Indigenous Outcomes.” Perinatal Indigenous Network of Perinatal Society of Australia & New Zealand 19th March 2004, Randwick, Sydney. Cited 69 from Aboriginal Health Council of South Australia: Statewide Women’s Workshop, August 2003 Campbell S. 2000, From Her to Maternity, Melbourne (Vic): Victorian Community Controlled Health Organisation. Campbell S, Brown S. 2004, Maternity care with the Women’s Business Service at the Mildura Aboriginal Health Service. Aust & NZ J Public Health; 28: 376-82. Carroli G, Villar J, Piaggio G, Khan-Neelofur D, et al 2001, WHO systematic review of randomised controlled trials of routine antenatal care. Lancet, 357: 1565-70. Carter E, Lumley J, Wilson G, Bell S. 2004. Alukura…..for my daughters and their daughters and their daughters. Aust & NZ J Public Health; 28 (3): 229-34. Cass A, Lowell A, Chrisite M, Snelling PL, Flack M, Marrnganyin B, Brown I. 2002. Sharing the true stories: improving communication between Aboriginal patients and healthcare workers. Medical Journal of Australia, 176: 466-470. Chalmers I, Enkin M, Keirse MJNC. (eds) 1989, Effective care in pregnancy and childbirth. 2 vols; Oxford University Press, Oxford, UK Chan A, Scott J, Keane R. 1990, Pregnancy outcome in South Australia. Pregnancy Outcome Unit, SA. Chan A, Scott J, Nguyen AH, Sage L. 2001, Pregnancy outcome in South Australia. Pregnancy Outcome Unit, SA. Chan A, Scott J, Nguyen AH, Sage L. 2005, Pregnancy outcome in South Australia. Pregnancy Outcome Unit, SA. Cochrane AL. 1972. Effectiveness and efficiency: random reflections on health services, London: Nuffield Provincial Hospitals Trust. Congress Alukura and Nganampa Health Council 1999, Mimymaku Kutju Tjukurpa: Standard Treatment Manual for Women’s Business in Central Australia. (To be read / viewed by women only). 70 Commonwealth Department of Health and Aged Care 2001, Extract from RFT 104/0001. Evaluation of the antenatal skills transfer program for Aboriginal and Torres Strait Islander People 3/2001. Commonwealth of Australia 2000, Health is Life: Report on the Inquiry into Indigenous Health. House of Representatives Standing Committee on Family and Community Affairs., APS Canberra. Congress Alukura and Nganampa Health Council 1999, Minymaku Kutja Tjukurpa Women’s Businesses Manual: Standard Treatment Manual for Women’s Business in Central Australia. Congress Alukura and Nganampa Health Council Inc., Alice Springs. Day P, Sullivan EA, Lancaster P. 1999. Indigenous Mothers and their Babies 1994-6. AIHW Cat. No. PER 9 Sydney: Australian Institute of Health and Welfare. National Perinatal Statistics Unit (Perinatal Statistics Series No. 8), Randwick, NSW. Department of Human Services 2001a, Fifteenth Report of the Maternal, Perinatal and Infant Mortality Committee on maternal, perinatal and postneonatal deaths in 2000. Department of Human Services, Adelaide. Eades SJ, Read AW. 1999, Infant practices in a metropolitan Aboriginal population Bibulung Gnarneep Team. Medical Journal of Australia, 170 (9): 433-6. Enkin M, Keirse MJNC, Renfrew M, Neilson J. 1995. (eds). A guide to effective care in pregnancy and childbirth. Oxford University Press. Oxford, UK, 2nd edition. Fathalla MF. 1990. The challenges of safe motherhood, in Health care of women and children in developing countries. Wallace HM and Giri K. (eds). Third Party Publishing Company, California. Flick B. 1997. “Empowering” Aboriginal Health Workers: As Victims – Or Controllers of Our Destiny? Aboriginal and Islander Health Worker Journal, 3, 21:19-20. Ford J, Sullivan E, Walters W Beischer N, King J, 2001. Report on maternal deaths in Australia, 1994-96. Canberra: Australian Institute of Health and Welfare and National Health and Medical Research Council. Aboriginal and Torres Strait Islander Information Unit. 71 Forrest B. 1995. The case for and against: the concept of specialist versus generalist health workers. Aboriginal and Islander Health Worker Journal 19, 4: 28-30. Franks CC. 1989. Preventing petrol sniffing in Aboriginal communities Community Health Studies, 13:1:4-12. Franks, C., Curr, B., Turner, M., Poulson, K.1996, Keeping Company; an Inter-cultural conversation. Wollongong: University of Wollongong. Franks, C., Brown, A., Brands, J., White, E., Ragg, L., Duffy, M, Walton, S, Dunbar, T. 2001, Research partnerships: yarning about research with Indigenous peoples. Casuarina, NT: Cooperative Research Centre for Aboriginal and Tropical Health, 2001, 44p, figures, and Online (516K). Haertsch, M, Campbell E, Samson-Fisher R. 1996. Important components of antenatal care: midwives’ and obstetricians views. Aust NZ J Obstet Gynaecol 4, 36: 411-6. Haertsch, M, Campbell, E, Samson-Fisher, R. 1999, What is recommended for healthy women during pregnancy? A comparison of seven prenatal clinical practice guideline documents Birth 1, 26: 24-30. Haertsch, M, Campbell E, Samson-Fisher R. 1998. Who can provide antenatal care? The views of obstetricians and midwives Aust NZ J Public Health 4, 22: 471-5. Hall M, Macintyre S, Porter M. 1985. Antenatal care assessed. Aberdeen University Press. Hall MH. 2001. Rationalisation of antenatal care. Lancet, 357: 1546. Herceg A. 2005. Improving health in Aboriginal and Torres Strait Islander mothers, babies and young children: a literature review. Department of Health & Ageing: Commonwealth of Australia. Hetzel BS, Dobbin M, Lippmann L, Eggleston E. 1974. (eds). Better Health for Aborigines? Report of a National Seminar at Monash University, University of Queensland Press. 72 Hodnett ED. 2006, Support during pregnancy for women at increased risk of low birthweight babies (Cochrane Review). In The Cochrane Library. 1, 2006. Oxford: Update Software. House of Commons 1992. Second Report: Maternity Services. HMSO, London. Humphrey, MD, Holzheimer, DJ 2001, Differing influences on Aboriginal and non-Aboriginal neonatal phenotypes: a prospective study. Medical Journal of Australia, 21; 174(10): 503-6. International Confederation of Midwives, 2005, The International Definition of the Midwife adopted at Council Meeting 19th July 2005, Brisbane, Australia: supersedes the ICM: The International Definition of the Midwife 1972 and its amendments of 1990 (and Appendix 4). Jackson D, Brady W, Stein I. 1999, Towards (re) conciliation: (re) constructing relationships between indigenous health workers and nurses, J Adv Nurs 1: 97-103. Laws PJ, Sullivan EA. 2004. Australia's mothers and babies 2002, (AIHW catalogue no. PER 28) Canberra: National Perinatal Statistics Unit, Australian Institute of Health and Welfare. Lumley J, Oliver SS, Chamberlain C, Oakley L 2006. Interventions for promoting smoking cessation during pregnancy (Cochrane Review). In The Cochrane Library. 1, 2006. Oxford: Update Software. Lumley J, Small R, Yelland J. 1990. Having a Baby in Victoria. Final Report of the Ministerial Review of Birthing Services in Victoria. Health Department of Victoria 1990. P.76-7. Edwards R, Madden R. 2001. The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples, Australian Institute for Health and Welfare Maher H. 1987. The Safe Motherhood Initiative: a call to action. Lancet: 668-670. Mahomed K. 2006. Iron Supplementation in Pregnancy (Cochrane review) In: The Cochrane Library. 1, 2006. Oxford: Update Software. 73 Mahomed K, Gulmezoglu 2006, Maternal iron supplementation in areas of deficiency (Cochrane review) In The Cochrane Library. 1, 2006. Oxford: Update Software. Mackerras D. 2000. Birthweight changes in the pilot phase of the Strong Women Strong Babies Strong Culture Program in the Northern Territory. Aust NZ J Public Health 1, 25: 34-40. Mackerras D 1998, Evaluation of the Strong Mothers, Strong Babies, Strong Culture Program. Darwin: Menzies School of Medical Health. Menzies Occasional Papers, Issue No: 2/98. Nathan P, Leichleitner Japananga D. 1983. Health Business: A community report for the Central Australian Aboriginal Health Congress. Heinemann Educational Australia. National Aboriginal Health Strategy 1996. AGPS, Canberra. National Research & Medical Council 1996. Options for Effective Care in Childbirth. Chair Prof J Robinson AGPS, Canberra. National Research & Medical Council 1998a. A Guide to the Development, Implementation and Evaluation of Clinical Practice Guidelines. AGPS, Canberra. National Health & Medical Research Council 1998b, Report on Maternal Deaths in Australia 1991-93. Report of the Maternal Mortality Working Party, Chair NA Beischer. National Health & Medical Research Council 1998c, Review of services offered by midwives. Chair Dr J King, APS Canberra. National Health & Medical Research Council 2000. Nutrition in Aboriginal and Torres Strait Islander Peoples: An information paper. AGPS Canberra. National Health & Medical Research Council 1997. A National Training and Employment Strategy for Aboriginal and Torres Strait Islander health Workers and professionals working in Aboriginal and Torres Strait Islander Health, Chair: David Rathman, APS, Canberra. 74 National Health & Medical Research Council 2003, Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Research. NHMRC, Commonwealth of Australia. National Health & Medical Research Council 2001, Report on Maternal Deaths in Australia 1994-96. Report of the Maternal Mortality Working Party. Chair: W Walters. National Health & Medical Research Council 1991, Report on Maternal Deaths in Australia 1985-87. Report of the Maternal Mortality Working Party, Chair NA Beischer. Neilson JP. 2006. Ultrasound for fetal assessment in early pregnancy (Cochrane Review), The Cochrane Library. 1, 2006. Oxford: Update Software. New South Wales Department of Health 1989. Maternity Services in New South Wales: Final report of the ministerial task force on obstetric services. Chair Prof R Shearman. New South Wales Department of Health. Painter RC, Roseboom TJ, Bleker OP. 2005, Prenatal exposure to the Dutch famine and disease in later life: an overview. Reprod Toxicol. 20(3):345-52. Panaretto KS, Lee HM, Mitchell MR, Larkins SL, Manessis V, Buettne PG, Watson D. 2005. Impact of a collaborative shared antenatal care program for urban Indigenous women: a prospective cohort study. Medical Journal of Australia, 182(10): 514-9 Roseboom TJ, van der Meulen JH, Ravell AC, Osmond C, Barker DJ, Bleker OP. 2001. Effects of prenatal exposure to the Dutch famine on adult disease in later life: an overview. Twin Res. 4(5):293-8. Rural Doctors Association of Australia, (RDAA) Editorial: Rural birthing services discussed with senior policy makers. RDAA News 2005; 4 (2): 5. Sackett D, Richardson WS, Rosenberg W, Haynes RB. 1997. Evidencebased medicine: how to practice and teach EBM. Churchill Livingstone, New York. Safe Motherhood Initiative 1992. Fact Sheets, World Health Organization, Geneva. 75 Scrimgeour, D, 1997, Community control of Aboriginal Health Centres in the Northern Territory; Menzies School of Health Research, Darwin, Northern Territory. Sibthorpe B, Becking FB, Humes G. 1998. Positions and training of the indigenous health workforce. Aust NZ J Public Health 6, 22: 648-52. Smith RM, Smith PA, Mc Kinnon M, Gracey M. 2000. Birthweights and growth of infants in five Aboriginal communities. Aust NZ J Public Health 24, (6): 637-9. Soong FS. 1983. The Role of Aboriginal Health Workers as Cultural Brokers: Some Findings and their Implications. Australian Journal of Social Issues, 18, 4: 268-74. Three Centres Consensus Guidelines on Antenatal Care Project 2001. Pubs: Mercy Hospital for Women, Southern Health and Women’s and Children’s Health, Melbourne. Townsville Aboriginal and Islanders Health Services Ltd (TAIHS), (undated). Mums and Babies Project: Project Overview. TAIHS, Townsville, Queensland. Tregenza J, Abbott K. 1995. Rhetoric and Reality: Perceptions of the Roles of Aboriginal Health Workers in Central Australia. Central Australian Aboriginal Congress Inc. Northern Territory. Tursan D’ Espaignet E, Measey M, Carnegie M, Mackerras D. 2003. Monitoring the “Strong Mothers Strong Babies Strong Culture Program”: the first eight years. J Paediatr Child Health; 39: 14-21. UNICEF, USDA, World Bank 2000. Technical Consultation on Low Birthweight. Jointly organised by The United States Department of Agriculture (USDA), The Human Development Network of the World Bank, The United Nations Children’s Fund (UNICEF), 30-31 March 2000. Villar J, Ba’aqeel H, Piaggio G, Lumbiganon P, Belzan J, Farnot U, et al, for the WHO Antenatal Care Trial Research Group. 2001. WHO antenatal care randomised trial for the evaluation of a new model of antenatal care. Lancet, 357: 1551-1564. 76 Villar J, Carolli G, Khan-Neelofur D, Piaggio G, Gülmezoglu M. 2006. Patterns of routine antenatal care for low-risk pregnancy (Cochrane Review). In Cochrane Library, 1, 2006. Oxford: Update Software. Waldenstrom U, Turnbull D. 1998. A systematic review comparing continuity of midwifery care with standard maternity services. British Journal of Obstetrics & Gynaecology, 105:1160-1170. Weetra C. 2001. Working with Aboriginal people in rural and remote South Australia: A cultural awareness handbook for people working in health professions. Spencer Gulf Rural Health School, Whyalla. Williams S. 2001. The Indigenous Australian Health Worker. Can research enhance their development as health and community professionals? Aboriginal and Islander Health Worker Journal 25(1). Women’s & Children’s Hospital 1996. Perinatal protocols and guidelines for management. Women’s & Children’s Hospital, Adelaide, South Australia. World Health Organization 1999. Reduction in maternal mortality. A joint WHO/UNFPA/UNICEF/World Bank statement. ISBN 9241561955. World Health Organization 2001. Reproductive health indicators for global monitoring: Report of the secondary interagency meeting. WHO/RHR/01.19. World Health Organization, Geneva. World Health Organization 2001. Manual for managing complications in pregnancy and childbirth: A guide for midwives and doctors. World Health Organization, Geneva. 77 APPENDICES Appendix 1 Regional Family & Anagu Bibi Birthing Program Screening tool Appendix 2 Regional Management Group Terms of Reference Appendix 3 Levels of evidence Appendix 4 International Definition of a Midwife Appendix 5 Reasons given for lack of birthing at Alukura Appendix 6 Supplementary Birth Record 78 Appendix 1 Mother’s Name: ……………………………………….. Mother’s Age: ……………...………………………….. Mother’s Address: ……………………………………. …………………………Postcode: ……………………. Contact Number Home: ….…………Mobile: ………………………………………………….. Is it safe to ring that number: Y / N Is it ok to leave a message on machine or with anybody else? Preferred Contact Time: …………………………….. Mother’s date of birth: ………./………/………. Y / N Obstetric information Gravida : Parity…………………:…………………… Estimated Date of Confinement: …………………... Gestation: ……………………………………………… Have you had any obstetric complications? Past Pregnancies: ……………………………………. …………………………………………………………. This Pregnancy: ………………………………………. Risk factors Yes 1. Are you < 20 years of age? 2. Are you Aboriginal or Torres Strait Islander? 3. Past Drug Use 4. Drug Use in this Pregnancy 5. Past Alcohol Use 6. Drinking alcohol in this pregnancy 6. Smoking cigarettes in this pregnancy 7. Pre-existing medical conditions 8. Mental Health Issues 9. GP Attendance Issues 10. Family Issues / Social Support Issues 11. Housing Issues 12. Income Issues 13. Transport Issues No Specify: Specify: 79 Regional Family Referral By / From: …………………………………… Date:……………………………………………………... Selection Tool Completed By: ……..………………. Interest in Alternative Birthing Services Program: q Yes q No How long staying in Port Augusta after birth:……………… Comments / Reasons WHY Person should be in the Program OR WHY NOT ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… ……………………………………………… Consent to share information with workers involved in the Regional Family Birthing Program / Child & Youth Health ……………………………………………………………. Mother’s Signature OUTCOME OF CASE CONFERENCE Date: ………………………………………………... q q Accepted into the Alternative Birthing Program Referral to Community Midwives Primary Midwife: …………………………………. AMIC Worker: …..………………………………… 80 Appendix 2 Alternative Birthing Services Program Regional Management Group Terms of Reference 2004/5 GOAL • To improve pregnancy and birthing outcomes for Aboriginal, young and socially disadvantaged women in Whyalla and Port Augusta. OBJECTIVES • To provide direction to the Alternative Birthing Program and monitor its progress. • To ensure that Aboriginal, young and socially disadvantaged women are offered maternity care that is: § culturally respectful § responsive to women’s needs § consumer driven § promotes choice and § based on evidence • To engage the Regional Aboriginal Women’s Advocacy Group and ensure the active participation of Aboriginal women in the development, implementation and evaluation of the Program. • To ensure ongoing commitment and coordination between services (such as Child and Youth Health) and provide a forum to discuss sustainability of the Alternative Birthing Program. • To enable discussion around strategies to improve Birthing Outcomes for Aboriginal and teenage women and involve a range of services and organisations to develop a broader, innovative approach. STRUCTURE AND MEMBERSHIP • The Regional Management Group will consist of service providers, community representatives and representatives of the Regional Aboriginal Women’s Advocacy Group. Reporting To: Meetings: NFWRHS Regional Board through Greg Bailey Held Monthly alternating between Whyalla and Port Augusta Chair: Greg Bailey Executive Support: Mary Salveron, Alternative Birthing Services Project Officer 81 Appendix 3 Levels of Evidence Level I Evidence: obtained from systematic review of all relevant randomised controlled trials Level II Evidence: obtained from at least one properly designed randomised controlled trial Level III-1 Evidence: obtained from well-designed pseudo-randomised controlled trials (with alternate allocation or some other method) Level III-2 Evidence: obtained from comparative studies with concurrent controls and allocation not randomised (cohort studies), case control studies or interrupted time series with a control group Level III-3 Evidence: obtained from comparative studies with historical controls, two or more single arm studies or interrupted time series without a parallel control group Level IV Evidence: obtained from case series, opinions of respected authorities, descriptive studies, reports of expert committees and case studies. In: National Research & Medical Council (1998a). A Guide to the Development, Implementation and Evaluation of Clinical Practice Guidelines. AGPS, Canberra. 82 Appendix 4 International Definition of a Midwife Adopted by the International Confederation of Midwives 19 July 2005 A midwife is a person who, having been regularly admitted to a midwifery educational programme, duly recognised in the country in which it is located, has successfully completed the prescribed course of studies in midwifery and has acquired the requisite qualifications to be registered and/or legally licensed to practice midwifery. The midwife is recognised as a responsible and accountable professional who works in partnership with women to give the necessary support, care and advice during pregnancy, labour and the postpartum period, to conduct births on the midwife’s own responsibility and to provide care for the newborn and the infant. This care includes preventive measures, the promotion of normal birth, the detection of complications in mother and child, the accessing of medical or other appropriate assistance and the carrying out of emergency measures. The midwife has an important task in health counselling and education, not only for the woman, but also within the family and community. This work should involve antenatal education and preparation for parenthood and may extend to women’s health, sexual or reproductive health and childcare. A midwife may practice in any setting including in the home, the community, hospitals, clinics or health units. 83 APPENDIX 5. Reasons given for lack of birthing at Alukura • More extensive practical support, such as food and laundry, is provided by the hospital than is available at Alukura; in the original model for Alukura women’s own families had been expected to provide practical care around the time of birth but the resources required were rarely available. • The hospital is perceived to be a place of safety. • Having a baby at the hospital is the norm. • There are likely to be relations, friends and people from one’s own community at the hospital. • Loss of links with the Grandmothers’ Law among young women giving birth and even among their own mothers. • Negative views of Alukura and ‘gate-keeping’ by bush clinic staff directing bush women to the hospital instead. • Lack of promotion of Alukura by staff and CAAC. • The relative isolation of Alukura and its distance from the town, shopping and friends in Alice Springs. • The extra demands on Alukura staff when a birth is imminent. • The higher proportion of Aboriginal women worth serious pregnancy and birth complications • The increasing – although still unusual – preference of partners for being with women immediately after the birth and occasionally during the birth. Table 3: In Carter, Lumley, Wilson & Bell (2004) 84 Appendix 6 Supplementary birth record 85