Aboriginal and Torres Strait Islander family access to continuity of health care services in the first 1000 days of life: a systematic review of the literature

Background Aboriginal women and their infants experience significant disadvantage in health outcomes compared to their non-Aboriginal counterparts. Access to timely, effective and appropriate maternal and child healthcare can contribute to reducing these existing health disparities. However, accessing mainstream healthcare services often results in high levels of fear and anxiety, and low attendance at subsequent appointments among Aboriginal women, due to inefficient communication, poor service coordination and a lack of continuity of care. Methods This integrative literature review sought to explore factors that contribute to continuity of care and consider service features that contribute to positive care experiences and satisfaction with care received by Aboriginal women and their infants. In total, 28 studies were included in the review and were thematically analysed using Braun and Clarke’s six steps of thematic analysis. This was followed by a collaborative, computer-assisted qualitative analysis, which resulted in the emergence of five key themes: lack of continuity of care, impact of lack of continuity of care, continuity of care interventions, impact of continuity of care interventions, and strategies to improve continuity of care. Results Most studies focused on health services in rural or remote Aboriginal communities and there was a lack of documented evidence of continuity of care (or lack thereof) for Aboriginal women living and birthing in regional and metropolitan areas. The majority of studies focused explicitly on continuity of care during the antenatal, birthing and immediate postnatal period, with only two studies considering continuity through to an infant’s first 1000 days. Conclusion The review highlights a lack of studies exploring continuity of care for Aboriginal families from the antenatal period through to an infants’ first 1000 days of life. Included studies identified a lack of continuity in the antenatal, peri- and postnatal periods in both regional and metropolitan settings. This, along with identified strategies for enhancing continuity, have implications for communities, and healthcare services to provide appropriate and culturally safe care. It also marks an urgent need to incorporate and extend continuity of care and carer through to the first 1000 days for successful maternal and infant health outcomes for Aboriginal peoples.


Yes
Women in the study were provided with some continuity of carer at the Health Centres during their preganacy with a midwife or district medical officer. Continuity was compromised if women presented to the Health Centres with a non-pregnancy related problem, as a different clinician would treat them. Lack of continuity of care was more frequently reported at the regional hospital, with women seeing multiple different clinicians at each antenatal visit. Discontinuities in communication and documentation that arose from multiple, delayed or absent handovers of patient results or management plans bteween hospital and Health Centres contributed to women receiving inadequate care.
Remore Aboriginal communities. Top End. Majority of women attended antenatal care. Poor adherence to follow-up for identified issues. Resourcing, organisation of health services, and beliefs, attitudes and practices of clinicians were the key elements influencing quality of care. Bar-Zeev 2012 From hospital to home: the quality and safety of a postnatal discharge system used for remote dwelling Aboriginal mothers and infants in the top end of Australia Mixed methods study: retrospective cohort study and key informant interviews 413 Aboriginal women and 60 key informants (health, management and administrative staff at health centres and regional hospital maternity, neonatal and paediatric units) Two remote Aboriginal communities in Northern Territory (maternity unit in a regional public hospital and two remote health centres) The study aimed to examine the transition of care in the postnatal period from a regional hospital to a remote health service and describe the quality and safety implications for remote dwelling Aboriginal mothers and infants.

None
Poor discharge documentation, communication and coordination between hospital and remote health centres was common. There was a lack of clinical governance and a specific position responsible for postnatal discharge planning in the hospital system, which were identified as serious risks to the safety of the mother and infant. It was noted that the discharge process and service delivery model need to be restructured to reduce the adverse effects on mothers and their infants.

Yes
Participants discussed the importance of improving the links, connections and associations between the two health systems as a means to improving the continuity of care and the communication process. Designated leadership posiitons including a discharge coordinator were seen as the most effective way of achieving this.
Transition fo care from a regional hospital to a remote health service. Remote setting, Top End. Poor discharge documentation, communication and coordination between hospital and remote health centres. Lack of leadership. Discharge process and service delivery model need to be restructured to reduce adverse outcomes and improve standards of care. N/A The major themes identified were valuing continuity of care, managing structural issues, having negative experiences with mainstream services and recognising success. The most positive experiences for women were found with services that provided continuity of care, had strong community links and were controlled by Indigenous communities. However, there were still barriers preventing provision of intrapartum midwifery care in remote communities.

Yes
Continuity of care was one of the major themes that emerged. The most positive experienced for women were with services that provided continuity of care, had strong community links and were controlled by Indigenous communities. Continuity of care enabled relationships between pregnant Indigenous women, midwives and other people involved int heir care, with a fundamental element of building relationshiops being effective communication.
Review of qualitative studies. The major themes identified were valuing continuity of care, managing structural issues, having negative experiences with mainstream services and recognising success. The expansion of midwifery models fo care for Indigenous women and babies could be beneficial in order to improve cultural safety, experiences and outcomes in relation to pregnancy and birth.

Waminda Mums and Bubs program
The program was developed to improve the health outcomes for Aboriginal women and their children. It allows the opportunity to create a trusting and long-term relationship between staff, Aboriginal women and their families. The program offers females lifelong medical and holistic social support. The service responds to community needs, is flexible and has strong partnerships that work towards new and innovative ways of working collaboratively.

Yes
The program described in the paper offers services from preconception, antenatal, birthing, postnatal and continuous care by a primary health care team. The holistic approach ensures the program dovetails together with the other services offered by Waminda.

Description of the Mums and Bubs
Program. The program focuses in flexibility, having a bi-cultural approach, and partnerships and referral pathways. The service responds to community need and is staffed by skilled Aboriginal and culturally competent non-Aboriginal women. N/A Four non-communicable disease priority areas were identified: smoking, alcohol, psychosocial wellbeing and nutrition. Strategies to address the priorities included upskilling staff to provide best practice care in priority areas, advocating for availability of healthy food, housing and local referral options, partnering with communities on health promotion projects, systems to facilitate continuity of care and clear referral pathways.

Yes
One of the key strategies identified to improve Aboriginal maternal health care was developing systems to facilitate continuity of care and clear referral pathways.
Stakeholders from a range of professions and organisations participated in the study. Identified barriers and enablers to highquality care included workforce support, professional development, teamwork, woman-centred care, decision support, equipment and community engagement. Malabar Community Midwifery Link Service 353 women gave birth through the service and 40% of babies were identified as Aboriginal or Torres Strait Islander. Over 90% of women had their first visit before 20 weeks of pregnancy. Accessing the service helped women reduce their smoking during pregnancy. Focus group findings showed that women felt the service provided ease of access, continuity of care and caregiver, and trust and trusting relationships.

Yes
The Malabar service is a community-base, primary health care midwifery and child health service. It is a group practise caseload model providing midwifery continuity of care during pregnance, labour and birth and postnatally with referral to child health services after discharge. The importance of continuity of caregiver was highlighted by study participants, with women describing it as "the best part of Malabar". They valued having a person they could call and having caregivers who knew their story. Overall, the new model was viewed as not a perfect system, but one that was changing. Participants agreed that they observed positive changes to the program. The new model was seen as a new way of working and resulted in a very different journey for Aboriginal women using the service. The woman-centred aspect of the new model was appreciated by all stakeholders. Aboriginal women could access continuous care and reported a more positive experience with maternity services.

Yes
The program described resulted in Aboriginal women being able to access continuity of carer in the regional centre for the first time, which resulted in women reporting a more positive experience with maternity services that they received. Women valued being able to get to know a midwife and seeing "the same face". Top End of NT The study describes infant health service quality following health system changes in the area Health system changes It was found that many of the issues that were identify prior to the introduction of health system changes persisted, namely: ineffective service delivery, inadequate staffing, and culturally unsafe practices. The six main themes that emerged from the interviews were: very adhoc, swallowed by acute, going under, a flux, a huge barrier, and them and us. Overall, the clinicians viewed the system as very chaotic.
Service provision and quality of care were perceived to be inadequate, despite the health system changes. Improvements are needed to the quality, cultural responsiveness and effectiveness of the services.

Yes
Staff turnover and rotation was highlighted by participants as a major contributing factor to poor continuity of care and service quality. Participants described the difficulty in building trust and developing relationships with infants and their families, which was considered key to effective child and family health practice. Midwifery care provided by Aboriginal midwifery student Four major themes emerged: communicating our way, the role of relationships, support and assistance, and challenges of the system. Aboriginal women felt that they benefitted as a result of having Aboriginal midwifery students provide continuity of care. The benefits of an Aboriginal midwife providing culturally competent, evidence-based clinical care, as well as having the ability to understand women's social, cultural and practical health care needs were highlighted.

Yes
Participants valued having Aboriginal midwifery students provide continuity of care, with four key themes emerging: communicating our way, the role of relationships, support and assitance and challenges of the system. The evaluation of the first 21 months of the new MGP service was associated with significant improvements in care outcomes and service uptake. However, despite the improvements the cohorts displayed an excessive burden of illness with very high rates of preterm birth, low birth weight and PPH rates. Despite improved screening rates across a range of areas, over half of women with infections and a third of women with anaemia were not treated in accordance with guidelines. However, the new model of care improved continuity of care, choice, co-ordination of care, collaboration and communication between providers.

Yes
Continuity of midwifery carer was one of the key elements identified and recommended for Birthing on Country models of care. The new model of care opened the pathway for remote-dwelling Aboriginal women to access the regional birth centre, where access relied on care being provided within a continuity of midwifery model.

None
The authors argue for a more intensive, coordinated strategy to improve maternal infant health in rural and remote Australia. Care needs to address social, emotional and cultural health needs, and be as close to home as possible.
Midwives can provide comprehensive, quality care within a collaborative team that includes women, community and medical colleagues. Aboriginal women should be encouraged and supported to train as midwives.

Yes
Midwives who have made the change to caseload practice, some of the key principles to sustainability are reported as: the ability to make meaningful relationships with women, offering continuity of carer, the occupational autonomy and flexibility and support at home and work.
Relocating women for birth does not address their cultural needs or selfidentified risks and is contributing to poor health outcomes. A more intensive, coordinated strategy to improve maternal infant health in rurala nd remote Australia must be adopted. Care needs to address social, emotional and cultural health needs, and be as close to home as possible. Alice Springs hospital, NT The papers describes the maternal and newborn outcomes for women accessing midwifery continuity of care in remote Australia

Midwifery Group Practice (MGP)
During the 4 year study period, there were no reported maternal deaths, and lower rates of preterm birth (6%) and low birth weight babies (5%) were found in comparison to population-based data. The findings demonstrate that continuity of midwifery care can be effectively provided to remote dwelling Aboriginal women and appears to improve outcomes for the women and their infants.

Yes
Describes a Midwifery Group Practice that was established in 2009 in a remote town of NT, with the aim of improving outcomes and access to midwifery continuity of care. It was found that continuity of midwifery care can be effectively provided to remote dwelling Aboriginal women and appears to improve outcomes for women and their families.
Remore city in NT. Midwifery Group Practice. The woman's primary midwife was present at 51% of all births and the woman's secondary midwife was presednt at 28% of all births. 16% of births were attended by another MGP midwife who was neither the orimary nor secondary midwife. 1/3 of SA Aboriginal women attended AFBP services between 2010-12. AFBP women were more likely to be more socially disadvantaged, have poorer pregnancy health, and to have inadequate numbers of antenatal visits compared to Aboriginal women attending other services. However, pregnancy outcomes were similar for the two groups. Interviews with program clients revealed that they highly valued care from an Aboriginal woman. The results suggest that AFBP reaches out to women with the greatest need and provides culturally appropriate and effective care through partnerships.

Yes
The Aboriginal Family Birthing Program has a commitment to continuity of care and includes an AMIC worker in a leadership role and provides education and training for AMIC workers in antenatal, birthing and postnatal care.
Aboriginal families across SA. Around 1/3 of Aboriginal women giving birth in SA atended AFBP services. Clients highly valued care from another Aboriginal woman. Despite challenges, the AFBP reaches out to women with the greatest need, providing culturally appropriate, effective care through partnerships.

Murphy 2012
The Aboriginal Maternal and Infant Health Service: a decade of achievement in the health of women and babies in NSW Program evaluation N/A NSW The service was established to improve the health of Aboriginal women during pregnancy and decrease perinatal morbidity and mortality among their babies. The service is delivered through a continuity of care model, where midwives and Aboriginal Health Workers collaborate to provide high quality maternity services that are culturally sensitive, women centred, based on primary healthcare principles and provided in partnership with Aboriginal people.

Aboriginal Maternal and Infant Health Service
The evaluation found that the program is achieving its goals with respect to provision of antenatal and postnatal care. It has demonstrated improvements in perinatal morbidity and mortality rates. The implementation of the program resulted in an increased proportion of women attending their first visit before 20 weeks gestation, decreased proportion of preterm births, and improved breastfeeding rates.

Yes
The Aboriginal Maternal and Infant Health Service is delivered through a continuity of care model where midwives and Aboriginal Health Workers collaborate to provide high quality maternity services that are culturally sensitive, woman-centred and provided in partnership with Aboriginal people.
Program established in NSW. The program is achieving its goals and has demonstrated improvements in perinatal morbidity and mortality rates. Aboriginal health and early childhood services in urban and regional Victoria The study sought to investigate child nutrition concerns of Aboriginal families with young children, as well as the training needs of early childhood practitioners.

None
Most frequently identified issues included low rates of breastfeeding, inappropriate introduction of solids, reliance on bottles, sweet drinks and energy-dense foods, poor oral health and overweight. The study identified gaps in service delivery for Aboriginal families with young children, suggesting a need for a coordinated, culturally responsive systems approach to providing support for breastfeeding and child nutrition advice and support for Aboriginal families. Capacity building for staff and supportive systems and policy were also highlighted as important areas to address.

Yes
Practitioners interviewed in the study reported concerns about continuity of care in early childhood services, particularly with access to a Maternal and Child Health nurse or equivalent early childhood health services.
One urban and one rural ACCHO. Concerns about staff training and capacity and access to maternal and child health services were common. The study identified major gaps in service delivery for Aboriginal families with young children and points to the need for a coordinated, culturally responsive systems approach to supporting Aboriginal families.

None
Women first saw a health professional regarding pregnancy at an average gestation of 7.9 weeks. 67.4% of women attended at least 5 antenatal appointments. 62% indicated that they had experienced at least one stressful life event during pregnancy. 97.3% gave birth in a public hospital and 66% indicated that they did not have a choice as to where they could have their baby. Only half of women with access to an Indigenous specific health service chose to use it. 12.8% of women indicated that they were able to carry out any cultural practices during their pregnancy and birth.
Recommendations include enhancement of cultural competency of maternity services, increased access to continuity of midwifery care models, facilitating more choice in care, engaging women in the design and delivery of care.

Yes
Continuity of carer during pregnancy is one of the key themes discussed in the paper. The majority of women indicated that they saw the same health professional during their preganacy. Women commented on their satisfaction with having a known midwife or the same midwife during their pregnancy. Care from a known provider enhanced women's maternity care experiences. The importance of creating models of antenatal care using a social determinants of health framework was emphasised. Destigmatising young parenthood and providing continuity of caregiver in culturally safe services, with culturally competent health professionals provides a means to encourage engagement with the health system and improve health outcomes for young mothers and their babies.

Yes
Providing continuity of caregiver in culturally safe services with culturally competent professionals provides a means to encourgae engagement with the health system and improves health outcomes for young Aboriginal mothers and their babies. The importance of caregivers developing and maintaining relationships with young Aboriginal mothers is highlighted.
Focus on pregancy among adolescent Aboriginal mothers. The paper discusses the importance of creating models of antenatal care using a social determinants of health framework. Delivery of maternal health care in Indigenous primary care services: baseline data for an ongoing quality improvement initiative The aim of the study was to describe patterns of delivery of maternity care and service gaps in primary care services in Australian Indigenous communities

None
The proportion of women presenting for their first visit in the first trimester ranged from 34% to 49% between regions, which is why documentation of care early in pregnancy was poor. 46% of known smokers received smoking cessation advice, 52% of women received antenatal education and 51% had investigation for gestational diabetes. There was good documentation of identified problems related to hypertension or diabetes, with over 70% of identified women referred to a GP/Obstetrician. Increasing access to evidence-based screening and health information (particularly around smoking cessation) were identified as opportunities for improvement.

Yes
It was found that in the postnatal period, only 55% of women received breastfeeding advice, and there was poor documentation of advice around smoking, hygiene, injury prevention and SIDS prevention. This indicated that there is a great potential to improve the continuity of care throughout the antenatal and postnatal period. In order to improve continuity in the remote setting, better integration of services or a redesign of care to support community-based services across the spectrum of maternity care would be required.
Five regions (Top End, Central Australia, Far west NSW, WA and North QLD. Documentation of care early in pregnancy was poor. Services had both strengths and weaknesses in the delivery of maternal health care. Increasing access to evidencebased screenign and health information were identified as opportunities for improvement across services.

Rumbold 2008
A review of the impact of antenatal care for Australian Indigenous women and attempts to strengthen these services Literature review 10 evaluations of antenatal care programs Australia-wide The aim was to review evaluations of changes in the delivery of antenatal care for Australian Indigenous women and the impact on care utilisation and quality, birth outcomes and women's views about care.

None
There were wide variations in the design, quality and reported outcomes of each evaluation. There was a lack of consistency in the findings for many outcomes. Modest increases were reported for measures of care utilisations, including accessing services in the first trimester. For birth outcomes, benefits were reported by some but not all care programs for perinatal mortality, preterm birth, birth weight and low birth weight. Women were generally positive about the services, particularly the use of female staff and continuity of care providers.

Yes
Women consistently highlighted the use of female staff and continuity of care as positive aspects of the maternity care that they received.
Literature review of antenatal care programs. Most women reflected positively about their care, includingt he use of female staff and the continuity of care providers. The review highlighted the need for good quality long-term data collection about the health services providing antenatal care for Aborigianl women.

Stamp 2008
Aboriginal maternal and infant care workers: partners in caring for Aboriginal mothers and babies Semi-structured interviews 5 AMIC workers and 4 midwives Regional SA The study investigated the views of AMIC workers and midwives regarding their roles, their partnerships and the Anangu Bibi program, following the first 45 births Anangu Bibi Family Birthing Program AMIC workers' role included clinical, cultural and social aspects from the confirmation of pregnancy through to 6-8 weeks after birth. Themes included clinical work, social and emotional support, language and advocacy, clinical benefits and cultural safety. Midwives' role included clinical practice, skill-sharing and mentoring. Midwives were guided by AMIC workers' social, cultural and community knowledge. The development of the partnership essential to the program took commitment and time.

Yes
The Aboriginal Birthing Program had a commitment to continuity of care as one of its key principles. The need for and importance of continuity of care and carer was discussed by care providers, but the difficulties of providing continuity due to staffing and resource issues was acknowledged.
Semi-structured interviews with AMIC workers and midwives. Regional SA. AMIC workers' role included clinical, cultural, social and aspects from the confrimation of pregnancy through to 6-8 weeks after birth. Midwives' role included clinical practice, skill-sharing and mentoring. The paper examines the development of the intercultural partnership established to address the health of Aboriginal mothers and babies. Skill sharing and two-way learning engendered mutual respect. Cultural safety was maintained for the Aboriginal mothers and their families as a result of the partnership.