Access and communication for deaf individuals in Australian primary care

Abstract Background and Aims The Australian Deaf Community face barriers that impede their access to, and communication within, primary health care settings. This study aimed to identify barriers and facilitators to access and communication for deaf individuals and Auslan interpreters in Australian general practice settings. Methods Semi‐structured interviews were conducted with eight Auslan interpreters and four deaf participants recruited from interpreter organisations and social media. Transcripts of interviews were coded inductively and deductively based on a model of access to health care. Results Patient, provider and contextual factors were reported. Patient barriers included English and Auslan fluency levels within the Australian Deaf Community. GP clinics varied in the degree of accommodation to the needs of deaf people. There were barriers related to the communication methods used by health care providers and their use of interpreters. Visual aids and flexibility in terms of the GP clinics' appointment systems facilitated access. Contextual barriers included the shortage of Auslan interpreters and the complexity of the National Disability Insurance Scheme. Conclusion The main barriers identified concerned the availability of interpreters, accommodation by health providers, cultural sensitivity and the adequacy of communication methods. Research is needed to explore the limitations of the National Disability Insurance Scheme and interventions to improve GPs' skills in communicating with Deaf individuals. Patient or Public Contribution A researcher with a hearing impairment and experience in working with people with hearing impairments was consulted on study design and interview questions. Recruitment was assisted by Auslan interpreter agencies and a Deaf Community Facebook group.


| INTRODUCTION
The Australian Deaf Community (ADC) consists of profoundly deaf or hard of hearing individuals who preferentially use Australian Sign Language (Auslan) to communicate. 1 Johnston 1

estimated that there
were approximately 6500 Deaf signers in Australia in 2001, although this may be an underestimate as it did not account for deaf individuals who adopted use of Auslan later in their lives. 2 There have been significant barriers to deaf individuals accessing primary health care and communicating with health care providers.
These include the lack of text alternatives for phone-based booking systems and the use of inadequate communication methods such as lipreading and written English. [3][4][5][6] The latter is problematic because written English is heavily dependent on the deaf individual's English literacy.
Both international and Australian research has identified low English literacy levels within the Deaf Community and poor English literacy as the primary barriers to accessing preventive health information. 4,5,[7][8][9] Auslan interpreters provide a vehicle for communication between deaf individuals and their health care providers, but are employed infrequently in health care consultations. [9][10][11] The Australian Disability Discrimination Act (1992) mandated equitable access to health care for deaf individuals, especially through the employment of Auslan interpreters where necessary. However, many health care providers lack knowledge of how to arrange Auslan interpreters and there is a shortage of interpreters across Australia. 8,10,12 The shortage of Auslan interpreters is well documented, with the Australian Department of Social Services' 2004 survey of 491 deaf Auslan users identifying that 49% of deaf adults who had been to a doctor (GP or a specialist) had been unable to secure an interpreter in the preceding year. 10 The NSW Deaf Society's interpreter service identified that it could not fill 79 requests for Auslan interpreting in serious medical, legal, mental health, social services and personal situations over a 1-month period in 2014 under the National Disability Insurance Scheme (NDIS) scheme. The NSW Deaf Society attributed such workforce shortages to factors such as a high attrition rate of interpreters due to dissatisfaction with working conditions and the highly casualized nature of Auslan interpreting work. The average turnover period for an interpreter was equal to or less than that of the average time it took to train and accredit a new interpreter in 2015. 9 There is a paucity of available research on the Deaf Community's access to health care in the Australian setting. This study thus aimed to explore the barriers and facilitators to both access and communication within the general practice setting experienced by both deaf individuals and Auslan interpreters in Australia.

| Auslan interpreters
Auslan interpreters who were fully accredited by the National Authority for Translations and Interpreters, had previous experience in interpreting in the primary health care and were older than 18 years of age were included in the study.
Interpreters were recruited via email from two different interpreting agencies: An Australia-wide agency and an interpreting agency whose service was localized to a metropolitan area. All Auslan interpreters were hearing people (not hearing impaired). The recruitment of interpreters was stopped when thematic saturation was achieved.

| Deaf participants
The inclusion criteria for deaf individuals were that they had to be hearing-impaired or profoundly deaf, used Auslan as their preferred mode of communication, culturally identified as a part of the Deaf Community and were older than 18 years of age. Deaf individuals who used sign languages other than Auslan (e.g., British Sign Language) and those who preferentially used spoken English as their preferred mode of communication were excluded.
Consent process: Interpreters and deaf people were sent the written participant information and consent forms via email and signed consent forms were sent back to the researcher before the interview. The information sheet invited participants to contact the researcher if they had any questions about the study and consent.
None did so. All participants were asked if they had any questions before the interview. None did.

| Data analysis
The audio recordings of interviews were transcribed, imported into Nvivo1218 and then coded inductively using the model of access to health care described by Levesque et al. 14

| Participants
All Auslan interpreters were fully certified with the National Accreditation Authority for Translators and Interpreters ( Table 1).
The deaf participants reported varying degrees of hearing loss. All deaf participants expressed a preference for Auslan as their primary method of communication (Table 2). And they're like, 'Oh, no, we don't do that. Because we only do written languages, we can't do video'. I7

| Approachability/ability to perceive
Deaf individuals added that even if there was information available in Auslan, the information did not cater for the diversity of Auslan levels in the ADC.
But sometimes, you know when you don't understand all.
Even the news. It'll have the captions or they'll have the interpreter. He will still ask because it's not necessarily gearing to his level of communication. And sometimes the interpreter isn't clear with their signs, or we don't use that interpreter, there's too much in delay, and they're using the same signs, and the captions. You know when you compare the signs that they're using and the caption they're using I find it very difficult, but for a lot of Deaf people, it does go over their heads'. P2

| Acceptability/appropriateness
Interpreters described instances where GPs used culturally inappropriate terms to refer to deaf individuals.
Especially with a new doctor, like they hadn't seen their doctor before the deaf walked up with a sore foot or to book a long appointment, they won't bulk bill that.
They will charge a gap.  In the absence of interpreters, deaf participants reported that family members would often interpret for them. However, they also reported that they expressed that this compromised their autonomy and privacy.

| DISCUSSION
This study aimed to explore the barriers faced by the ADC in accessing and communicating within the primary health care setting and found many such barriers.
There are few studies currently that discuss the perspective of and the challenges faced by Auslan interpreters. The strength of this study is that by exploring such challenges, it provides a foundation for addressing the inadequacy of both the quantity of Auslan interpreters in the health care setting in Australia and the quality of their training. Furthermore, this study was able to reveal a discrepancy between the deaf patients' needs and the interpreters' perceptions, elucidated by patients who forgo interpreter use, which is only possible with both the deaf participants' and the interpreters' involvement with the study.
The barriers were analysed using the Levesque access framework and are discussed below.

| Approachability
Deaf participants and interpreters reported significant barriers to accessing the information on health services. Consistent with the literature, participants reported a diversity of English literacy levels and expertize in Auslan in the ADC. 15

| Limitations of the project
Deaf participants were all recruited online, and only online interviews were possible because of restrictions due to the COVID-19 pandemic at the time. This may limit the generalizability of our findings, especially for individuals without access to or skills in using online technology. The small number of deaf participants recruited meant that we were unable to reach data saturation, so further research with deaf participants would be valuable.
It is possible that there was a negative bias in the study results.
Deaf individuals were very vocal about their negative experiences with their access to health care access. The individuals were recruited from an ADC social media page, which individuals have been observed to utilize to discuss negative experiences that they have had as hearing-impaired persons. Interviews were conducted in an inductive manner. As more themes surrounding negative experiences of deaf individuals had emerged, less questions were subsequently focused on exploring positive experiences regarding the health care system.

| CONCLUSION
It is known that the ADC has faced significant barriers to accessing primary health care due to the lack of availability and use of Auslan More research is needed to inform ways to increase the interpreter workforce and to improve the skills of primary care providers to use them. There is also a need for research to inform how to improve NDIS-funded access to interpreters for the ADC.