Perth Children’ Hospital.

PCH is WA’s specialist paediatric hospital and trauma centre providing tertiary level care to people aged up to 16 years of age. Parents/carers who attended an outpatient clinic at the hospital for any reason were opportunistically recruited into the project by a health worker if they met the eligibility criteria.

South Coastal Babbingur Mia.

South Coastal Babbingur Mia is an Aboriginal health service that provides flexible and supportive services for the Aboriginal and/or Torres Strait Islander community in Boorloo’s southern suburbs. Services include health assessments, child health checks, pregnancy support, immunisations, and a weekly playgroup. Parents/carers attending the weekly playgroup were opportunistically recruited into the project by staff at South Coastal Babbingur Mia if they met eligibility criteria.

Boorloo Public Health Unit.

Boorloo PHU is a metropolitan-wide public health unit that offers immunisation support and a culturally-safe home-visit vaccination service for Aboriginal and/or Torres Strait Islander families. During routine telephone calls to book home visits, Boorloo PHU Aboriginal Health Liaison Officers informed parents/carers about the study. If parents were interested in participating, Aboriginal Health Liaison Officers sought verbal consent for researchers to attend the at-home vaccination appointment. Researchers then provided more information about the project and obtained informed written consent prior to data collection occurring.

Physical opportunity.

Benefit of culturally sensitive health and outreach services. Many participants spoke of the benefit of culturally sensitive health and outreach services in helping them access vaccinations for their child/ren. The provision of transport support (such as the free ‘pick up’ service offered by South Coastal Babbingur Mia) assisted parents/carers in accessing vaccines for their child/ren.

I’ll ring [South Coastal Babbingur Mia] and let them know that I think [my daughter] is due for her needles... and they’ll check and go, “Oh, yeah. She is. Do you want to arrange a time to come in? Do you need to be picked up, and we’ll pick you up and drop you off?.”

- Mum, 18- 24 years

Participants also spoke favourably about at home immunisation services (such as the service provided by Boorloo PHU). These services helped them to access vaccinations in the comfort of their home.

I like how [Boorloo PHU] come out here…it’s a lot easier, and they just text when the kids are due [for their immunisations].

- Mum, 35-44 years

Some described their preference for using Aboriginal health services because of the welcoming environment. Some also described feeling more comfortable receiving immunisations from Noongar health workers.

It’s just easy and good here [at South Coastal Babbingur Mia]. Here it’s good. It feels like home. You’re always welcomed. They have the playgroup here if I needed my other kids to get watched.

- Mum, 25-34 years

You can tell with the [Aboriginal Indigenous Health] team they know how to talk to Indigenous fellas, because with us it’s just talk to us like we’re people. You don’t have to talk to us like we’re slow or something…I think just because we’re Indigenous I think they – not all of them, just a few – if they haven’t dealt in the community before they think they have to deal with us in a certain way. I’m like, ‘Just talk to us like we’re human, we’re fine.’

- Mum, 25–34 years

Social opportunity.

Family and community influence. Only some participants spoke of a social expectation among their family and community to vaccinate their child/ren. This included being reminded by friends and family to vaccinate, and not being welcomed at community events unless “you get [your kids] vaccinated”

…The Elders will jump down your throat [about childhood vaccination]…[They say] “it just needs to be done.”

- Mum, 25-34 years

For most participants, however, vaccination did not appear to be an expectation within their family or community, nor was it commonly discussed in their social networks.

Motivation.

Importance of vaccine information coming from trusted health authorities and community leaders. Participants had high trust in health care workers to deliver vaccine information and advice. However, there were mixed responses on whether they trusted the government’s advice about vaccinations. Some trusted this advice because childhood vaccines are “standard for every kid” (Mum, 25–34 years) while others felt strongly that the government “lie about everything” (Mum, 25–34 years) and “will obviously say whatever they need to say to get people to do what they want” (Mum, 25–34 years).

Those who mistrusted government indicated the importance of vaccine information and advice coming from trusted health workers and community leaders. Our only vaccine hesitant participant explained:

[Have vaccine information] come from a health care worker, come from Elders. Educate an Elder and say, “This is why you’re getting it done”. If they don’t believe it, then I’m not going to believe it.

- Mum, 25-34 years

Strengthening the next generation. Some participants described wanting to “protect” (as described by Mum, 25–34 years) their children from illness and strengthen the next generation of Aboriginal and/or Torres Strait Islander children as a primary driver to vaccinate. As put simply by one participant: “Our kids are our future” (Mum, 25–34 years).

I’ve got a very strong…community-based family at home, especially when it comes to me [and] my baby…I guess they just want…all our Aboriginal babies to be healthy…so immunisations especially in our family are a must…We just want our generation or the next generation to be stronger and better than we are at the moment…The [babies are] very strong and they’ve got a lot of value for immunisations…

- Mum, 25-34 years

This motivation to vaccinate was mirrored even among participants who were unsure about the effectiveness of vaccines. Furthermore, recommendations from trusted health workers helped to bridge the gap where doubts lay.

I can’t really say [whether vaccines work]… I don’t know if [vaccines] help or not. But...if I’m being told [by a health worker that] it does help, then obviously I’m going to do the right thing and protect my kids from certain [illnesses] that they could possibly get.

- Mum, 25-34 years

Routine vaccines viewed as safe. All but our vaccine-hesitant participant perceived routine vaccines as safe. They put their trust into routine childhood vaccines because of how long they have been in use, and felt there was sufficient and acceptable data on any possible short-term and long-term side effects.

The immunisations have been around for years since I was a kid, since my mum was a kid, and we’re all okay.

- Mum, 25-34 years

Participants also perceived routine childhood vaccines as safe through their lived experience: their child/ren had not experienced any major adverse reactions to vaccines. However, some raised that their view on vaccine safety would likely change if their child/ren ever experienced a major adverse reaction.

One participant had concerns about why live-attenuated vaccines were needed. However, our AIR check indicated that this participant’s child had previously received live attenuated vaccines on the NIP. This indicates that her concerns were not strong enough to motivate her to refuse them.

I guess [vaccines are safe]…it’s just I don’t know [about] live vaccines…Why are [my children] getting injected with a live vaccine to prevent them from getting this disease? Why don’t you just make something to stop them from getting the disease instead? This whole thing confuses me.

- Mum 25-34 years

Routine vaccines viewed as effective. Most participants believed that vaccines are effective in preventing illness and associated hospitalisation in children.

I do believe [vaccines work]….it gets rid of all the viruses, … if [children] didn’t have their needles….Perth Children’s Hospital would have been really decked out with sick kids.

- Grandmother, 45-54 years

A minority of participants were unsure of the effectiveness of vaccines as their child/ren has been sick despite being previously vaccinated. These participants held the misconception that routine vaccinations prevent all illnesses in children.

I don’t know if [vaccines] help or not…you’d think [kids]… wouldn’t get as sick as often [if they’re vaccinated]… but my oldest daughter, she’s been immunised when needed, but she’s the one who’s always been sick, always in hospitals. So, I’m not sure if [vaccines work] – I know they probably do work, but I don’t know.

- Mum, 18-24 years

Intention to catch-up. At the time of interview, all participants described their child/ren as being caught up with their vaccines or described an intention for their child/ren to be caught up. Those intending to catch up had plans in place for the child’s upcoming vaccinations.

Yeah. I’ve got him booked in [to be vaccinated] next Friday

- Mum, 25–34 years

Capability.

Knowledge about vaccines and how to access them. Participants frequently mentioned meningococcal vaccines. Many recalled media campaigns observed in their childhood featuring images of the long-term impacts of a meningococcal infection and promoting the importance of vaccination. Participants did not express detailed knowledge about any other specific vaccines, or the diseases they protect against. Despite this, there was an overarching understanding among most participants that the diseases these vaccines protect against could be life-threatening to their child/ren.

They [diseases that the needles protect bubs against] could be serious and kill them. That’s why we have the vaccinations, to try and prevent that happening.

- Mum, 25-34 years

Participants were also aware that the parent-held child health record book provided by the Western Australian government health system contained a list of vaccines their child needed, and the ages at which each vaccine was recommended. However, some had since lost their record book, or it had been accidentally destroyed.

Participants were informed of possible vaccine side effects at the time of vaccination by health care workers. They reflected that they could minimise these side effects by administering paracetamol before vaccination or in the hours following vaccination. Awareness of possible side effects did not appear to deter parents from choosing to vaccinate their child/ren. However, one participant held the misconception that convulsions can be caused after any vaccine if paracetamol is not administered prior to vaccination.

Finally, there was high awareness among participants of where they could go to get their child/ren vaccinated. These included their local GP clinic and Aboriginal health and medical services in Boorloo.

Physical opportunity.

Difficulty accessing health clinics. Lack of transport options. Many participants described access to health services as being a key barrier to on-time vaccination. Access barriers were primarily associated with difficulties in travelling to health services to receive vaccinations, due to a lack of transport options. Some of these participants did not have their driver’s license and/or access to a car, and therefore were reliant on public transport; this was particularly challenging for parents/carers with multiple young children.

I don’t have a car or anything…no license, and I’ve only got a double pram for the three kids.

- Mum, 25-34 years

These participants described how having access to a car would be make it easier to get their child/ren’s vaccinated on time.

Managing child and family responsibilities. Several of the participants shared stories about the significant, conflicting personal and family challenges they had experienced, making it more difficult to manage child and family responsibilities, including obtaining vaccinations. Some of these conflicting challenges included death of a close family member, high rates of chronic disease and caring responsibilities in Aboriginal families (including supporting a family member who was experiencing problems related to the use of alcohol and/or illicit drugs), overcoming personal physical and/or mental health issues, frequently moving between multiple residences, and supporting a family member who was experiencing intimate partner violence.

One participant described the unexpected passing of her husband a few months prior to the interview. This had a devastating impact on her mental health and her ability to undertake many of the parenting tasks she did before her husband passed:

I’m usually pretty good with it all. But this is where it gets tough. Her [daughter] father [and my husband] passed away [3 months ago]. So I’ve been staying home….I’ve been finding it hard…When I get into the car, I have panic and anxiety attacks, which I’ve never ever experienced in my life. So I’m only behind with her [needles] because I’m still learning to [cope].

- Mum, 25-34 years

Others spoke of the challenges they had in caring for multiple children, sometimes without support from a partner, while balancing work and other family responsibilities. These pressures made it difficult to vaccinate their child/ren on time.

With my first child, I used to keep track of [vaccinations] all the time myself. As the second one came, I would try to keep track of it, but sometimes I forget. With this one, the third one, I’ve just not been able to be on top of it.

- Mum, 18-24 years

Ineffective reminder systems. Participants were predominately made of aware of vaccine due dates through reminder systems that form part of Australia’s vaccination governance system. However, most participants only received such reminders once their child was already overdue. Reminders predominantly came from Centrelink (a Commonwealth Government agency that provides income support to eligible Australians) informing parents/carers that their child did not meet their immunisation requirements, as per the No Jab, No Pay legislation. The notifications informed them their Family Tax Benefit payment would be reduced (and their Child Care Subsidy stopped, for those who send their child/ren to early childhood services). Participants considered these notifications useful as a reminder to vaccinate their child, but they also regarded them as threatening.

It’s kind of like a threat, almost, the way that [Centrelink] notify you [that your child is overdue for a vaccine], because they say, ‘If you don’t get it done we’ll cut off your [Family Tax Benefit] payments’, so they put the pressure on you a little bit.

- Dad, 25-34 years

A few participants spoke about receiving reminders from other sources, such as phone calls, emails and/or notifications in the mail before routine vaccines were due. However, these participants had an existing relationship with a health service or local clinic, which was the source of the message. Some of these participants also noted that even though they were linked in with a health service, they were not notified at any time about the additional vaccines recommended for Aboriginal and/or Torres Strait Islander children. Meanwhile, participants who were not linked in with a health service did not appear to receive vaccine reminders prior to due dates.

Limited access to vaccine information presented in user-friendly format. Most participants described not receiving previous information or resources about childhood vaccination. A small number had received information pamphlets about vaccinations in hospital shortly after their child was born, but some did not find these particularly useful at that juncture.

I just don’t have the time [to read immunisation pamphlets] juggling with a new baby and all that.

- Mum, 18-24 years

Participants who had an existing relationship with a health service also described receiving information pamphlets about vaccinations during visits. However, some described these resources as difficult to understand, and believed that face-to-face conversations would be more beneficial. They also highlighted the need for vaccine information to be presented in simpler terms, without the use of medical jargon.

Some people don’t know how to read and write properly. If they had the person sit down with them and talk to them about their kids and what [vaccines] they’re getting done and that, that would be more helpful for the Aboriginal community.

- Mum, 18–24 years

Capability.

Knowledge. Unaware that child is due for vaccines. Above, we described our participants’ experiences with inadequate reminder systems that did not occur at all, did not call their child in for the additional vaccines, or (in the case of Centrelink) came too late in the form of notifications threatening the cancellation of financial support. Without such reminders, there was little to prompt participants to get their children vaccinated on time, because most described not knowing when their child was due for vaccines.

To me, I didn’t really know much about vaccine dates. I obviously knew they had to happen but I didn’t know when exactly they had to happen, what age, what months.

- Dad, 25-34 years

However, most participants had high awareness of where they could go to receive vaccines for their children.

Limited knowledge about additional recommended vaccines. Only a few of our participants were aware of the additional vaccines recommended for Aboriginal and/or Torres Strait Islander children. They tended to hold misconceptions on the reasoning behind the recommendation, which they often associated with physiological differences between Indigenous and non-Indigenous bodies. Some believed Aboriginal and/or Torres Strait Islander people had a “weakened immune system” (Mum, 18–24 years) or that there were “genetic reasons behind it” (Mum, 25–34 years) or that “….[Aboriginal] DNA...and blood is constructed differently” (Mum, 25–34 years).

Some also raised fears that appeared to reflect Australia’s history of colonisation and genocide of its Aboriginal and/or Torres Strait Islander peoples.

I don’t know. Why do they got to get them? That’s what I’m always confused.... is something wrong with us that we’ve got to get additional protected?... Why have we got to get that and no-one else does? Or are they trying to kill us off or I’m like what’s going on here?

- Mum, 25-34 years

Most of our participants learned about the availability of additional vaccinations through the interviews. We took this opportunity to explain the rationale behind them, and how this connected to risk factors in the community rather than differences between bodies. Following these conversations, which arose organically during the interviews, almost all participants indicated their desire for their child/ren to receive the additional vaccines.

Child or parent unwell at time of scheduled vaccine. A small number of participants described themselves or their child/ren being unwell at the time of scheduled vaccines, as the reason for being overdue.

I was a bit late for the last two’s immunisations, yeah, because my boy was sick. He had like a sinus infection, his ears were a bit runny, poor thing. So he was a bit late, a few months behind for his needles. My daughter, she had a fever the day I took her in [to get vaccinated]….and they said” No, we can’t [vaccinate her] while she’s sick.’…if they’ve got a little bit of a fever [the GP won’t vaccinate them].

- Mum, 25-34 years

Improved reminder system.

Participants were in agreeance that receiving a reminder notification one to two weeks before vaccines are due – rather than only receiving a notification once already overdue – would make it easier to vaccinate their child/ren on time. Some suggested these reminders could come in the form of an email, text message or notification from MyGov (the secure, online platform used to access Australian government services, including Centrelink).

It will be helpful if they…send a reminder to my phone, like a text message or a thing on my MyGov where I normally go put my [Centrelink] form in and so I’ll end up checking it. And that’ll actually work a lot better, where I can plan a day to go out to get the needles done.

- Mum, 18–24 years

Improved access to vaccination services.

Improved access to vaccination services would also assist parents/carer in getting their child/ren vaccinated on-time. Participants suggested a ‘pick up’ service, where transport to and from a vaccination service can be provided for parents/carers and their child/ren, and a ‘home visit’ service, where vaccinations can be provided in the home. Some also suggested ‘pop-up’ vaccination clinics at community centres and shopping centres, inspired by the services that they had observed during the pandemic:

…when the COVID vaccine got rolled out, they had all the pop-up clinics everywhere and then you just went and sat. But there were quite a few people, so you got through quite quickly. You could probably do like similar, just on child vaccinations.…a drop in [service]…at a community center or shopping centers… It could even be, like, in a clinical van that is outside and it can just be either a waiting…You could put your number down, go do your shopping and when they call you, be, like, ‘Hey, you’re up in line,” instead of having to wait there.

- Mum, 25–34 years

More appropriate information.

Participants sought more information about childhood vaccinations to help inform vaccine decision-making. They were particularly eager for more information on the additional vaccines recommended for Aboriginal and/or Torres Strait Islander children. They wanted to know which additional vaccines are recommended, when they are due, and why they are recommended for Aboriginal and/or Torres Strait Islander children.

Participants also wanted this messaging to be easier to understand. They suggested that it focus on which diseases each vaccine protects against, the severity of these diseases, and why these vaccines are important.

[I would like] more of a breakdown of …not of what actually goes in the immunisations, but how it works around [my child] as he grows, if that makes sense…I don’t know much about needles in general or anything, but I know he has to have his hep B…and there’s other types of needles he’s got…I know that he’s got to get his needles, but it’s like, maybe breaking it down more on why. Like, what’s it useful for?

- Mum, 25-34 years

In terms of the medium for this messaging, most participants suggested pamphlets or brochures. Some suggested audio-visual resources could be helpful to deliver vaccine information to parents/carers. Importantly, participants emphasised trusted health workers and community leaders were the right people to deliver this information. They also suggested that conversations with healthcare workers should accompany and buttress any information resources provided.

In terms of timing, participants suggested that the best times to receive information on childhood vaccines were both during and after pregnancy.