Three key themes were identified in the data: (1) The system takes priority, with sub-themes of the system isn’t working, entry into the system is problematic, pathways and referrals within and between services are disjointed, external linking is reliant on individuals, and workforce issues limit continuity of care; (2) culture is not central in approaches to care, with sub-themes of services and approaches to care, and importance of relationships; and (3) ‘we’ve got to be allowed to do it in a different way’, with sub-themes of the system is racist, call for decolonising the system, and ways forward.
Main theme 1 The System takes priority
The System isn’t working
There are just too many different things out there and there are just too many gaps to fall through, and the people right up the top, they need to really work together to get it right. (FG4).
Discussions identified that the family journey is not supported by the system pathway and the system appears not to have continuity at the core. The system supporting Aboriginal families is reported to be fragmented with interactions between services are often disjointed and without integration.
“I think that’s the problem, though, of not having the continuity. Knowing that you’ve got the continuity at the triage [start of care journey antenatally], because if you knew you had the continuity at the triage, you could follow up” (FG2). Discussion in FG 2 identified the frustration of not always knowing how to support families in the system because continuity was not prioritised depending on the models of care presented to a family and how they were supported to make choices. They noted that while attempts had been made to address this, they were not always successful. “If they opt for our kind of care in our [mainstream] service then we’ll try for continuity with an AMIC worker provided but that doesn’t always [happen]” (FG2).
Within the current system there is service repetition with multiple services doing exactly the same thing. “We had a lady just recently that’s got multiple services in there that we had no idea that we were doing. So, continuity of care goes out the window then because you’ve got multiple services that aren’t talking to them, and I think that a lot of problems with a lot of these clients [Aboriginal families] is because their services aren’t talking” (FG4). With a lack of communication between services, different services may not be aware of all the support a family is receiving.
Entry into the system is problematic
Continuity can be further challenged when families are seeing multiple services and different workers within services. Although there is a state-wide pregnancy information phone line (pregnancy related), approaches to entering the system are not consistent with different entry points and varying information about services available. Participants in FG 1 argued that Aboriginal families may not be informed of all their options and services available. “The mums are not told in the hospital that they might be able to go to a local Aboriginal health service …they don’t get that opportunity. If it means that they want to go down that path, then a track needs to be developed, a pathway needs to be developed so that that can happen” (FG1). Participants in FG 2 identified that taking particular antenatal pathways excludes Aboriginal families from other services. For example, intake systems do not align. “Their intake system doesn’t necessarily match with how we operate so there’s a gap” (FG2). If families want to enrol in the mainstream birthing program, they are excluded from the Aboriginal health service (birthing program). A major challenge identified in this group was for health workers and families to know about all the different services and programs.
A further concern was that the mainstream state-wide system enforced limits on the total number of women assisted by culturally appropriate services. This meant that if Aboriginal women did not enrol early enough in their service of choice, they missed out. Additionally, Aboriginal women could not have both a mainstream midwife and Aboriginal care. For example, the MGP (Midwifery Group Practice: enabling women to be cared for by a primary midwife) is popular and sought out early by informed women. “The other thing too with the continuity models generally, I’m thinking about MGP as well, they’re very popular. And a lot of the well-educated women will be seeking them out early. So, those places fill very quickly” (FG2). Women who do not get into MGP may then miss out on continuity with the Aboriginal Family Birthing Program because they are then in a later stage of pregnancy. Further, restrictions occur at a system level when for example, the location of services, funding requirements that family enrol antenatally and follow through, families may not be informed that a service is voluntary, and restrictions on how care is provided.
Pathways and referrals within and between services are disjointed
Post-birth pathways for all families, including Aboriginal families, begin with CaFHS (Child and Family Health Service). Entry into this service pathway is not through personal contact but is automated with predetermined service progression. The CaFHS nurses provide a follow-on service from midwives’ home visits. This is problematic for Aboriginal families as AMIC workers are excluded from the formal pathway. “It would be good for those forms, if the women are Indigenous or baby’s Indigenous, that those forms don’t just go to a nurse, that they are automatically sent to the ACCs for the ACCs to be the primary carer” (FG3).
Information technology systems to support continuity of care and referral between services within the state-wide mainstream system were reported to be lacking. Participants expressed frustrations with a system that relies on old technology, paper forms and fax, to connect community-based child and family health service (CaFHS) with families after giving birth. “That piece of paper referral has got to follow that mum all the way through” (FG1). These apprehensions progressed to concerns about lack of continuity for the family across the entire pathway from antenatal care to birthing and through to community-based care with child health services. For example, understandings of predetermined generic pathway into CaFHS, where hospitals do not additionally (or alternately) send referral forms onto Aboriginal health services. “It never goes to the Aboriginal Health Service so they can go out” (FG4). As a consequence of not referring to Aboriginal services and workers “many of our clinic Aboriginal families might not get that option of having a worker. So, I think that's a gap” (FG8).
Within the mainstream network discussion from FG 5 identified that the system appeared to be a series of services that were not integrated. “It's very separated. And its forced separation so I think we're seen as different people and services … the ACC service and your service [Aboriginal Maternal Infant Care] are just very different, and they operate separately” (FG5). Aboriginal families can be assisted by discrete services within the same system rather than experience interconnected services.
External linking is reliant on individuals
Referral pathways between external services were reported as largely reliant on individual knowledge and connections. For example, women were not informed by mainstream services of Aboriginal specific services and midwives were unsure of referral processes and services offered by other organisations. Referrals and transitions between services were often up to individuals and how they work, or not, with other services. Care was reported as being fragmented from the beginning. “The first 20 weeks. It’s already fragmented, she’s got three different types of care going on” (FG2).
Some services were reluctant to let go of clients and refer on. “I think sometimes we just think, we’re just going to hang onto this client now, and even sometimes down the track things sort of fester up and there are other issues around the families that we’re like, oh, hell, we haven’t got the services. So, it’s linking the families and letting go, as well, to a service that is better suited for that family” (FG4). Rather than working collaboratively, they may see others as competition. “It’s always been kind of them against us sort of, but we we’re wanting the same outcome for the client” (FG1). This may be because services are concerned about their funding and jobs. “It’s [organisation] become very protective and this surrounds people’s roles from there. I don’t know if it’s attached to funding, or what the motivator is” (FG2).
Processes for referral to interservice procedures are not well documented or known meaning that connection is often ad hoc. “They’re informal links, there’s no roadmap for that connection” (FG4). The process is reliant on individuals to proactively know and connect with other services. As a participant from FG 7 reflected “All of them [other agencies] have got different arms into homelessness, family supports, and I need to navigate that system to work out who would be the best” (FG7). Some families may need a little more support to encourage them to access other services. “Pathways exist for everybody, but sometimes some families do need a little bit more support in actually encouraging to access services that are quite scary for anybody” (FG4). Within the mainstream health service processes exist to support this and when there are enough staff this appears to work well. “We have an arrangement for those families who don't want to engage with us and have had bad experiences in the past, what's it called; a warm handover, which is joint visit” (FG8).
Workforce issues limit continuity of care
Professional scopes of practice limited what health workers can do. For example, midwives provide care across the antenatal, intrapartum, and postnatal period. AMIC workers reported antenatal contact but being unable to support women during the intrapartum period. In another example, ACCs working in CaFHS identified that they could take a more active clinical role for Aboriginal families during visits. “The ACC should be the primary carer; they should be the lead. But it’s not, it’s nurse led” (FG3).
The current workforce has insufficient Aboriginal workers. “We've got one Aboriginal cultural consultant, one. It's way too few to actually give them the care that they need culturally” (FG6). This means that non-Aboriginal nurses often visit Aboriginal families unaccompanied by an Aboriginal worker. A CAFHS nurse (FG8) stated “I haven't done many [visits] with an ACC because there hasn't been the availability of ACCs ... I would have liked the ACC because I don't feel that I can provide them with a smidgeon of what they could be” (FG8). At times this workforce crisis meant that ACCs were placed in the awkward position of representing a family that they did not know during urgent case reviews. In these situations, they felt the representation tokenistic as they could not effectively undertake this role.
Although many individual workers were supportive of continuity of care in principle and tried to enable this through their approaches to care, the services they were able to offer made this difficult. “We are trying with what resources we've got to offer ...a good service but it's not the best service, it's the best we can do with what we've got at the moment” (FG8). For example, continuity was more difficult when families did not attend appointments. “It’s difficult to provide services because they may just not turn up for whatever reason. There are lots of complexities in everybody’s lives” (FG4). Families “might engage for a short time but then they would go walkabout. They would literally go… You couldn't get hold of them; you couldn't find them” (FG6).
Main theme 2 Culture is not central in approaches to care
Services and approaches to care
Effective approaches to care need to be family and community centred (52). From a policy and service perspective, mainstream health professionals are guided by a person-centred approach to care. “It’s very individualised to what each woman needs to help her succeed and have good antenatal care” (FG3). Yet Aboriginal culture is community centred. Participants questioned whether, from an Aboriginal perspective, the person-centred model of care is appropriate. Whereas Aboriginal community-controlled services are run with Aboriginal contexts in mind, mainstream services were seeking to accommodate Aboriginal families but not being set up with their values in mind. Thus, with this mismatch, approaches to care can vary. Although there is individualised care and support, this relies on workers being proactive.
When care is Aboriginal led there is some continuity. In the perinatal space and AMIC worker explained “We’re the primary, so we’re the consistent in our women’s journeys and then whatever midwife is available will come in” (FG3). However, while care could be somewhat smooth, this could also lead to some duplication. “Sometimes it's the AMIC worker who has the relationship with the family. So, it's doubling up, we [the midwives] need to find out what the AMIC worker is doing” (FG8). This may also be related to a ‘them and us’ attitude between health professionals with different levels of qualifications. “We still find that the hierarchy in health is quite a barrier. That notion that the professional knows best is a significant barrier” (FG3).
Respect and trust need to underpin care (Nursing and Midwifery Board of Australia, 2018). The values underpinning individual health professionals’ care of Aboriginal families largely support continuity of care. These include acknowledging Aboriginal ways of knowing and being, respecting individuality and choice, and developing trust. Aboriginal ways of knowing and being were acknowledged and prioritised by non-Aboriginal health professionals working with Aboriginal families and colleagues. “We have to work alongside our different cultures, but it needs to be driven by them” (FG7). Similarly, “I think co-working, about respectful relationships and understanding the importance of the role of Aboriginal [health workers]” (FG3).
Respect for choice was valued. For example, recognising that some families may prefer to use more Aboriginal specific services than others. “Sometimes the hurt and the past and the history is too deep to want to actually engage with us” (FG6). Alternatively, recognising there are families that do not want any support. “In the big picture too is that some families don’t want anything. All they want is just to get on with their business, and they don’t want anybody to be around” (FG4). Problematically, non-Aboriginal health professionals’ perceptions of continuity of care may not be what families need. “Our perception of continuity of care might not be what that family chooses to think of as needing. It’s a partnership that we need to have with them” (FG7).
Trust was a value shared by health professionals and they actively sought to develop this with families. However, Aboriginal families may not trust health care workers if they know too much about them beforehand and do not take time to get to know them. Different workers from the same organisation visiting families does not develop trust. Trust takes time to develop at the community and personal level. “The community do get to know staff, it’s a lot of trust, and that’s invaluable when working with families who have got a lot going on” (FG4). It was reported that the CaFHS system is more focused on paperwork than people which impacted on the development of trust. “An important role is for us to bring these clients in to clinic, and that’s their first contact and they can develop trust about coming to clinic and then they’ll develop trust about taking their child to school. So necessarily keeping them with services in the home I don’t think is always in their best interest” (FG4). Once a family trusts a service, they promote by telling others. “It’ll take a while, but the word will get out there eventually, the word gets out there.” (FG4)
The importance of relationships
There was consensus among health professionals that developing respectful personal relationships with families is important and overarches continuity of care. “The rapport established whilst the nurse, that determined a lot of whether the client continued to want to engage” (FG6). The level of family engagement with services may therefore depend on the individual skill sets of health professionals. It is somewhat easier for Aboriginal workers to interact with Aboriginal families. For example, they may have insights into the family. “The ACC might really know the history of the family quite well” (FG5).
Non-Aboriginal professionals working in mainstream services desired to build relationships with Aboriginal clients, but this did not always happen. “They’re [CaFHS] very nosey and not always, they don’t always build rapport before they start asking questions” (FG3). This posed a dilemma regarding how to make these relationships happen when what works for some families does not work for others. Furthermore, a ‘tick the box’ approach to care was seen as depersonalising and tokenistic. “There's never any time for that rapport building. You try and leave it in there throughout your visit, but you also have forms that you have to complete and health checks you need to be doing” (FG5).
Some services for Aboriginal families are provided by a mainstream professional working in conjunction with Aboriginal counterparts. In these circumstances, it was questioned who decides and who does what. When working in a team, delineation and relationships between colleagues are important. “It depends on who the ACC is and your relationship with them” (FG5). Interservice procedures are not always well documented or known, therefore linkages fall back onto individuals and individual relationships. When these relationships are not present interservice referrals collapse and decisions are reliant on individual health worker preferences.
Relationships to community are important to Aboriginal families. Non-Aboriginal workers often lacked connections to community yet realised these connections may not be appropriate. One nurse said “We don't often see Aboriginal clients in our Getting to Know Your Baby groups. And that's a shame”, whilst another said, “It would be nice if they actually had Aboriginal families together [with an Aboriginal worker]” (FG6).
Ideally, relationships with services would begin before there was a need for families to use them. “It’s especially important with our cultural groups, if they get to know you before they actually need your service” (FG7). Perceptions of services are important. For example, families may be unclear about the role of workers. “It took a long time for them to warm to us I suppose because they thought we were on the side of welfare” (FG1).
Main theme 3 “We’ve got to be allowed to do it in a different way”
The system is racist
Facilitators to cultural safety for Aboriginal families woven into mainstream services included the employment of some Aboriginal staff, asking the family if they would like an Aboriginal worker or service to be involved, actively seeking understanding of the family’s cultural genogram and kinship ties, and providing non-Aboriginal staff with cultural awareness training. Nurses asked the family about who was important to baby. “We’ve got an ‘our families, our support’ form. So, it says who lived in your house and who are the people that are important to baby rather than who’s your family, because they might not talk to any of them” (FG7). Whilst in place at policy level, the above recommendations were not always enacted in culturally safe ways. It was pointed out that culturally safe organisations worked with community appointed Aboriginal consultants, provided equitable services, had living, and working cultural safety documents and promoted interagency liaison with the Aboriginal community.
Use of a deficit model was evident when attributing care for Aboriginal families “The thing is because we’re looking after Aboriginal families, not every family is high risk so it’s an assumption, like, there’s assumptions embedded in there. That’s your institutional racism” (FG2). Further, culturally safe practices were not always evident. There were reports of cultural safety for Aboriginal families being compromised for example when non-Aboriginal staff were called upon to backfill Aboriginal workers due to staff shortages. Western ways of working took priority as discussed in FG 3: “We’re still governed by a hospital and the hospital is a business and it’s a white business ...a Western business. We [Aboriginal people] like to do things differently” (FG3). Furthermore, non-Aboriginal health professionals identified needing additional support to be able to provide cultural care and at times appeared unwilling to share power. “If it’s continuity of care around Aboriginal families with the mainstream health then we need Aboriginal people to be walking alongside us” (FG7). While this appears helpful, with an Aboriginal family the call would be for the mainstream service to be walking alongside the Aboriginal families. Such experiences lead to organisations having a poor reputation amongst community. “There’s a lot of women in community that don’t like CaFHS because CaFHS are quite invasive when they go into the homes” (FG3).
Culturally safe care was compromised when delivered by nurses who identified as not being knowledgeable of Aboriginal ways. For example, a child and family health nurse in FG 5 said, “I hadn't taken out the specific Aboriginal support information. And… I don’t feel comfortable to [work with Aboriginal clients] because I'm not really versed in what exactly Aboriginal groups are” (FG5). FG 2 stated outright that amongst non-Aboriginal nurses “there is still racism among some” (FG2). On the other hand, some non-Aboriginal nurses were acutely aware of being from a white European female background and identified the impact this could have when working with Aboriginal families. “I'm a white European woman walking into their… culture, I don't fit in that culture, there needs to be more [training]” (FG6).
Participants spoke of professional development learning opportunities such as cultural training, and policies related to cultural safety. They also spoke of Aboriginal consultants being engaged to work with leadership. This was all seen as insufficient. “It’s not enough just to give us the cultural training, we need them [AMIC workers and ACCs] as colleagues” (FG7). A non-Aboriginal nurse suggested that cultural awareness training be Aboriginal led. “It’s up to the Aboriginal staff to say, this is what we think that you need to know, that you need to understand so that you are respecting and honouring and working the right way” (FG7).
Workplaces are not always experienced as culturally safe for Aboriginal workers, with experiences of conflict of interest and disrespect. A participant in FG 6 explained that “sometimes there's also a conflict of interest for Aboriginal workers in the community ... And so that stress, they take that stress home because they know that person and know they're seeing it professionally and then, so it overlaps and that's a very big problem” (FG6). This is exacerbated by the ongoing lack of Aboriginal staff. Further the involvement of Aboriginal consultants was not well respected and their presence tokenistic. “ACCs would benefit from ... being more respected and having a voice and doing it all and not sitting there just as…[someone] who just comes along because the family’s black. They need to have more of an active role” (FG3).
Call for decolonising the system
The system influences all aspects of continuity of care including approaches to and provision of heath care, values, and relationships. Yet the system is not what health professionals want it to be for Aboriginal families. “We’ve got to be allowed to do it in a different way” (FG6). They resoundingly argued for a system that focuses on values with “cultural safety at the centre” (FG6). A whole system change was suggested to overcome hierarchical and political barriers to integrating services. “The problem with what we’ve got at the moment is it’s still sitting within mainstream and it’s still influenced, I won’t use the word dictated, but it’s still influenced...and it’s controlled by things that are outside our control as Aboriginal people” (FG3). Similarly, “It’s almost sometimes like a them-and-us kind of... We’re not, we’re all together but it just doesn’t communicate like that” (FG2). Mainstream systems were not provided in an “Aboriginal way”.
Continuity of care is impacted when services do not work well together or support each other. While there are informal links between Aboriginal and non-Aboriginal services, often these are not formalised. “It needs to be formalised, it needs to be a procedure, yes, and it needs… People need to be trained … whose services are involved? Ring those services and bring us together and work with us, not just this ad hoc ringing and ad hoc emailing, that’s how families fall through the gaps” (FG4). Formalising these relationships and links requires mainstream services to recognise the value and place of Aboriginal health services for families, rather than seeing them as an add on to mainstream service.
In addition, Aboriginal and non-Aboriginal services were reported to not communicate well. “We don’t communicate, and we’re doing a lot of the same stuff” (FG4). An Aboriginal worker not attending a pre-arranged visit with a non-Aboriginal worker is another example of this. “I found it really frustrating because one the worker wasn't there, two, the worker can't really tell me what support she has or hasn't got. So, I don't actually know what supports I should be trying to put into place” (FG8). The links that Aboriginal services have with child protection services are also problematic. “Certainly, with child protection it's so important that we work together with the Aboriginal consultants too. There's in the past there's been issues with that, I think. Often, they're inaccessible like they're off sick or whatever. There's no good support for us when we're worried about a child's safety” (FG6). Without strong interservice relationships service continuity collapses.
Ways forward
There were many suggestions for a ‘utopian’ or ideal model of care which was Aboriginal led, valued Aboriginal ways of knowing and being, and designed with continuity of care and constant follow up principles in mind. “To be gold standard I think it does need to be Aboriginal led, Aboriginal designed, Aboriginal staff” (FG3). Furthermore, “A gold standard to me, which we don’t have enough of, is if we had Aboriginal practitioners that actually did the work” (FG7). Such a service would be promoted before pregnancy and take time to build rapport with families. “It’s especially important with our cultural groups, if they get to know you before they actually need your service” (FG7). The service would be accessible and safe, with clinics and outreach available. Roles within existing services may be revised to accommodate this. “I think Child and Family Health maybe need to look at the Aboriginal Health Practitioner role and how they can specialise and tailor it towards the Child and Family Health work that they do” (FG2).
Overall, practical suggestions for professional development included avenues for exchange opportunities to work remotely and receiving cultural training led by Aboriginal staff. The participants called for a whole of systems change, especially systems and pathway designs that supports service engagement, such as working in a preventative manner with an antenatal start.
The health professionals highlighted a practical application that embed past learnings, allow for flexibility. Many commented that roles need focus and that the system needs more ACCs, AMIC workers and Aboriginal nurses and midwives. Ultimately connecting to community and other services was seen as key to success in working with and providing continuity of care for Aboriginal families in mainstream health.