There are often barriers that can prevent Aboriginal families from receiving appropriate and timely treatment
The referral-based system of care can be difficult for Aboriginal families to navigate in many ways. Each time a family is referred to a different service, there is a risk of missing an appointment or disengaging. The rates of child ENT patients who miss their appointments is more than double for Aboriginal children (35% in 2017) than non-Aboriginal children (16% in 2017). If a family miss multiple appointments, they can miss out on treatment altogether.
Aboriginal families can miss appointments for different reasons, including:
- not all health services are culturally appropriate, which can make families uncomfortable and reluctant to engage
- Aboriginal families have cultural obligations that can take precedence over a medical appointment, such as assisting other family members in crisis, and attending funerals and sorry business
- appointment letters may be sent to outdated addresses, especially for people with a transient lifestyle
- SMS reminders are sent in English, but English is not the first language of all Aboriginal people
- health services use communication methods that families do not engage with – such as hardcopy letters. Young parents are now more engaged with digital and mobile communications
- socio-economic disadvantages, such as lack of transport, can also make it difficult for families to attend appointments.
If a client misses 3 appointments, it is WA Health policy to take them off the waiting list altogether. For vulnerable children, whose families cannot navigate a sometimes complicated system, this policy is likely to result in diagnosis and treatment delays. These delays put an affected child’s development at risk.
Within the ACCHS sector we found examples of organisations that are actively dealing with these barriers. We spoke with Moorditj Koort, an ACCHS in the Kwinana area, who explained to us how they help Aboriginal clients navigate services and overcome barriers to treatment.
Helping Aboriginal families access services: Moorditj Koort
Moorditj Koort is an ACCHS with a clinic in Perth’s southern suburbs. During our visit, the organisation told us about how it provides flexible, culturally competent support to its clients. It offers transport to help families get to appointments. It also offers non-judgmental support that recognises the traumatic history many Aboriginal families have dealing with government entities. Moorditj Koort also helps families navigate mainstream services. We spoke to a number of women who were clients of the organisation. One mother of a child with OM told us her child’s grommets needed replacing and her child had suffered repeated ear infections. Their school reported the child’s ear problems to the Department of Communities (Child Protection). Moorditj Koort supported the mum to get her child back on the waitlist for surgery, which the mum assumed had already been done. They also helped her talk to Child Protection despite her fears. Because of this contact, Child Protection wrote a letter of support for surgery.
Figure 7: Example of actively overcoming barriers to accessing services
WA Health has not consistently co-designed services with Aboriginal communities so that services work for them
Child ear health services are largely standardised across the State and co-design with Aboriginal people has not occurred in a consistent way. The co-design of services with its users is best practice and recognised in both the Sustainable Health Review Report and WA Health’s Aboriginal Health and Wellbeing Framework 2018-2030. Co-designing services is a way to empower socially disadvantaged communities and ensure programs reflect their values and needs. When services are not designed for communities they are less likely to be usable or meet needs and more likely to be ineffective.
We spoke to Aboriginal people from different areas who told us the different priorities they had for their communities:
- In Kalgoorlie, women told us they were keen to have Aboriginal people involved in health service delivery, so that families felt welcomed and safe using the services. Ideally, they wanted a health service that was run as a partnership between Aboriginal and non-Aboriginal people, using the strengths and expertise of all.
- In Halls Creek we spoke to elders whose main concern was the effect of alcohol and drug use on young people’s parenting skills. They worried that this stopped young parents from focusing on their children’s ear health.
- In Perth, one mum told us young women mainly use mobile phones and are unlikely to read posters or pamphlets. But she thought they might use a culturally appropriate mobile phone app to learn about, monitor and report on their child’s ear health. We were also told that it is possible to incorporate a basic hearing test in a mobile app, which could further help parents monitor their children.
We found no clear examples of an accepted best practice worldwide approach to the prevention, detection and treatment of OM. Success in this area relies on regional approaches that reflect the distinct local issues in those communities. Our discussions confirmed that community needs differ and so the approach to services should be tailored to be effective and achieve consistent outcomes. Getting the design right will therefore depend on effective local engagement with the users of services.
Better collaboration among agencies and stakeholders is required to improve Aboriginal children’s ear health.
Aboriginal children’s ear health is influenced by the social, economic and physical environment and to address all of these factors requires cross-entity collaboration, which is currently limited. For instance, entities do not coordinate ear health screening with housing environmental health checks or providing co-ordinated education about prevention. Health services are key to reducing the burden of ear disease through effective detection and treatment, but will have limited impact if known risk factors such as overcrowded housing and poor sanitation are not addressed at the same time.
Poor environmental health, particularly overcrowded housing, is well-recognised as a contributing risk factor for OM. In New Zealand, improved housing conditions and access to health care halved the incidence of CSOM in rural Maori children between 1978 and 1987. The Department of Communities is responsible for the housing of many Aboriginal communities as well as Aboriginal people living in mainstream public housing. Its data shows overcrowding occurs in 8% to 21% of tenancies in remote Aboriginal communities, although overcrowding is historically under-reported. Sharing information about these cases with WA Health would make it easier to design better programs.
Collaboration between WACHS and local ACCHS occurred in 2 of the 3 regions we visited in our audit. The Sustainable Health Review has called for long term funding of ACCHS to create partnerships in prevention and early intervention in Aboriginal health. Using the expertise of ACCHS where available may limit barriers to service and provide better outcomes.
In Perth, CAHS does not collaborate with other entities on Aboriginal children’s ear health except for school entry checks and the school ear health program, which as noted earlier is too late to prevent early childhood learning and development delays. However, schools told us they were not informed of the result of children’s ear tests and therefore could not provide assistance in the classroom or to families.
The Department of Education provides assistance to around 850 Aboriginal students (as at May 2019) with conductive hearing loss through its School of Special Needs: Sensory (SSEN: S). This is approximately 2% of all Aboriginal school students in WA. Based on our analysis of prevalence, this likely leaves many undiagnosed children without support to learn. SSEN: S can only support students who have been diagnosed with hearing loss, showing the need to coordinate with WA Health and other screening services.
The Department of Education has to manage the challenges associated with children’s hearing loss to ensure they are still able to learn at school. Schools also provide an opportunity to educate families as well as children in healthy behaviours and awareness of OM and its causes and treatments. While this is happening in some schools, there is no coordinated approach to identifying the schools where this approach might be most needed and have most impact.
WA Health built important relationships developing a strategy for Aboriginal children’s ear health, but successful implementation is hampered
Both WACHS and CAHS partnered with key stakeholders to develop the WA Child Ear Health Strategy 2017-2021 (the Strategy). Their partners include the Aboriginal Health Council of WA, Rural Health West, TKI and the WA Primary Health Alliance. Prior to 2017, although there was a model of care for OM, there was no strategy either within WA Health or across this broader group of stakeholders to improve Aboriginal children’s ear health.
The development of the Strategy has built good relations between the stakeholders. These relationships will be crucial for the implementation of the Strategy, which will need to involve sustained improvement in a complex environment. However, good relationships alone will not be sufficient to implement the strategy effectively.
The Strategy set out a comprehensive set of priorities that need to be addressed to improve child ear health in WA. These priorities are:
- enhanced prevention
- standardised surveillance
- consistent treatment
- workforce development
- program evaluation
- coordination and partnerships
- comprehensive evidence.
The Strategy provides a clear direction for stakeholders to work towards but does not include specific actions, timelines, responsibilities, performance measures, financial requirements, funding or sources. There is no single organisation accountable for driving action on the Strategy. Since its release in late 2017, 5 working groups have been established to work out how to implement the Strategy. However, the working groups are yet to make recommendations, and changes to services on the ground to achieve improved ear health have not progressed significantly.
Environmental health is a key missing element in efforts between stakeholders to accomplish the Strategy. Poor environmental health is a risk factor for OM. The Department of Communities is responsible for the housing in many Aboriginal communities whilst the DoH helps to maintain environmental health standards for Aboriginal people in regional and remote WA. Neither are part of the working groups to improve child ear health. It is important that these 2 entities are included in plans for improving ear health to ensure that housing conditions are not contributing to high rates of OM.
While system-wide improvements have not yet been made, there are examples of effective local initiatives across the State and other jurisdictions
Although the priorities identified by the Strategy have not yet progressed to actions, during our audit we saw examples of initiatives and activities in the places we visited that were working well. In order to continuously improve services on the ground, it is important that entities learn from what is already working and share those learnings. There are also examples of effective initiatives in the non-government sector and other states.
Kalgoorlie’s Pina Karnbi pilot project
In Kalgoorlie, WACHS has partnered with a local ACCHS, Bega Garnbirringu, and other stakeholders to try a more proactive way of screening Aboriginal children for ear disease.
The Pina Karnbi project is a pilot initiative that upskills nurses to offer ear checks and health promotion information when children are immunised. There are a range of incentives for parents to have their children immunised, including financial penalties for not doing so, so the immunisation rate is high.
The project creates many more opportunities for extra checks of Aboriginal children’s ears. It means more extensive checks are offered at 2, 4, 6, 12, and 18 months of age, and at 4 years. A physical check is done rather than just a discussion with parents, and it includes tympanometry. Tympanometry is an assessment of middle ear function and the mobility of the ear drum.
The project also includes a new service to help families navigate the health system if a problem is identified. A nurse works with families, GPs and specialists to promote a smooth and consistent service for the family.
As of December 2018, Pina Karnbi had 180 children participating and the project confirmed the high rates of ear problems in young Aboriginal children in Kalgoorlie. Forty-seven percent of tympanometry results were abnormal and 6 children had undergone or were scheduled for grommets as a result.
The project was due to be evaluated in February 2019 with a view to rolling it out further across the Goldfields.
Figure 8: Pilot project to increase ear checks
Another example of good practice is demonstrated by SSEN: S, which is implementing new ways to better support Aboriginal children with fluctuating and undiagnosed hearing loss.
The SSEN: S program in the Ngaanyatjarra Lands
Because the eligibility for SSEN: S services rely on having long-term hearing loss and a formal diagnosis, it is likely that many Aboriginal children are missing out. In recognition of this, the SSEN: S has recently piloted a project in the Ngaanyatjarra lands near the Northern Territory border, to provide more help to students with fluctuating and/or undiagnosed hearing loss.
As part of this program 123 students (primary and secondary) were screened with 82 students (67%) exhibiting either OM or conductive hearing loss. These hearing impairments were previously undiagnosed and the SSEN: S was then able to provide assistance to the schools which the children would not otherwise have received.
Figure 9: Example of school-based screening
Local strategy in the Kimberley
In the Kimberley, WACHS had partnered with the Kimberley Aboriginal Medical Service to develop a child ear health strategy for the region. Two dedicated ear health coordinators, 1 from WACHS and 1 from KAMS, worked in partnership to write the strategy and implementation plans. WACHS has now employed a second ear health coordinator in the Kimberley and together, the 3 Kimberley ear health coordinators are tasked with working out a 3-year action plan.
Figure 10: Example of a local strategy to improve services
Apart from specialist support from the SSEN: S, the amount of support that students receive varies from school to school, depending on the resources of the school and how it prioritises hearing. We visited 4 schools, each with a high number of Aboriginal children – East Kalgoorlie Primary School, Coolgardie Primary School, Halls Creek District High School and Neerigan Brook Primary School in Armadale. East Kalgoorlie Primary School provides students with a lot of extra help in relation to their ear health and hearing, while Coolgardie Primary School, which is a much smaller school, did not have the same level of resources available.
East Kalgoorlie Primary School
East Kalgoorlie Primary School recognises that its students’ wellbeing has a big influence on their education, so puts a lot of effort into making sure kids are as healthy as possible. Some examples include:
Figure 11: Example of additional school-based support
Queensland’s Deadly Ears Program
The Queensland government has developed the Deadly Ears Program that leads the implementation of Deadly Kids Deadly Futures: Queensland’s Aboriginal & Torres Strait Islander Child Ear & Hearing Health Framework 2016-2026, which is a 10-year plan for improving health, early childhood development and education outcomes in that state. It is jointly owned by the Department of Health and Department of Education.
The framework outlines shared goals, actions and how progress will be measured. Each year an action plan is released that details the specific activities service providers and stakeholders will undertake and the outcomes are provided in a summary report.
The program has increased rates of attendance at audiology from 53% (2014) to 94% (2018). Rates of children fitted with hearing aids has increased, particularly among the critical 0-3 age group. It has also developed resources to assist the hearing diagnosis in children 0-2, increasing the rate able to have a diagnosis from 49% to 65%. The program aims to be a culturally competent workplace and this helps the engagement with families accessing the program.
Figure 12: Interstate example