International studies show that deaf sign language users encounter barriers to healthcare and have worse outcomes than the general population. Contributing factors are limited health literacy,1 health practitioners’ unfamiliarity with the implications of deafness and the background of sign language users, and insufficient provision of sign language interpreters within healthcare systems.2–4 Most sign language users have been deaf since infancy, and the resulting disruption to language acquisition typically has far-reaching developmental and educational impacts. Internationally, the prevalence of pre-lingual deafness is about 7:10,000.5 The deaf NZSL community is estimated at approximately 4,500.6 In New Zealand prior to 1980, sign language was censured by schools and society as a means of communication. Intensive pedagogical focus on the mastery of speech was at the expense of a comprehensive education for many children.7 Deaf children tended to sign to each other and thus NZSL began as an underground language, which has developed through intergenerational networks of deaf people who claim a cultural identity.8 Today, human rights measures—particularly the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2009)—have led the education system to recognise the importance of sign language to deaf people’s access to society, yet not all deaf children have timely access to NZSL, and educational disadvantage persists for this population.9,10 Childhood deafness restricts incidental learning of common cultural knowledge that hearing children absorb through conversation and media. Exclusion from spoken information is compounded by literacy delays associated with pre-lingual deafness,10 and literacy itself is strongly associated with the capacity to make use of health-related information.11 Restricted access to communication throughout a deaf person’s life can result in a ‘fund-of-information-deficit’1 that compromises healthcare outcomes.12 For example, family medical history is a risk factor for various conditions, but many deaf people have been excluded from conversations about health issues among family members. Deaf people with limited health literacy exercise less autonomy in healthcare settings, may have limited understanding of healthcare delivery systems and are less compliant when they do not understand physician instructions. This results in negative outcomes and higher costs for patients and providers.15 Compromised access to the determinants of health—employment, social networks, participation in local community and society16—and systemic barriers to accessing health information and services contribute to poor health and wellbeing outcomes for deaf people.17 For example, a UK study found deaf people had above average rates of risk factors for cardiovascular disease, hypertension and diabetes, and high rates of self-reported depression.2 Deaf people may delay using primary health services due to communication difficulties, and instead present to emergency or specialist services when a condition is worse. A US study found that deaf adults are less likely to visit a doctor, due in part to dissatisfaction with communication and their perception that hospital emergency departments (ED) provide better accessibility than primary care doctors.18
Effective communication in healthcare settings contributes to good patient outcomes,and this requires recognition of linguistic and cultural differences.17 A Dutch study of communication between deaf people and healthcare staff revealed that professionals were generally unaware of linguistic and cultural differences associated with being deaf, assuming spoken Dutch to be the preferred language of deaf patients when it was actually sign language, and practitioners rated the quality of communication more positively than their deaf patients.4 A UK survey found 77% of British Sign Language users reported difficulties communicating with hospital staff, and 33% left consultations with their family doctor unsure about medication instructions and subsequently took the wrong dose. Many deaf people were reluctant to admit they had not understood their GP, which may explain why 87% of GPs in this study believed that they could communicate effectively with their deaf patients through lip-reading.19 In fact, lip-reading requires proficiency in the spoken language, and the capacity to lip-read is reduced by factors such as being ill, tired, anxious, poor lighting, facial hair or hands partially covering the lips, or visual barriers (eg, a partition).17
Patient comprehension underpins compliance with medical instructions, and interpreters can play a critical role in this. A US study found that the use of professional interpreters in consultations resulted in higher patient compliance and engagement in preventative programmes.20 A UK study of deaf and hearing impaired people’s communication preferences in hospital consultations found that 50% preferred an interpreter, whereas 43% preferred a consultation with a signing health professional if available, and 7% agreed to accept communication using speech, as long as the doctor was ‘deaf aware’.21 Deaf people often go without interpreters at health appointments because they are difficult to find at short notice,4 or an interpreter is not offered. A recent Australian study reports hospitals not consistently providing interpreters, especially in emergency departments, although the need for a qualified interpreter in this situation is high.In the absence of an interpreter, communication often relies on writing, gesturing, lip-reading or mediation by family and friends.22 However, research suggests that around 50% of the information translated by an unqualified interpreter or family member is misinterpreted or omitted, leading to poor comprehension and reduced compliance with medication instructions.19 Inadequate interpretation is compounded by deaf individuals’ gaps in health knowledge and limited ability to use written sources of information.23 Poor communication can lead to an increase in invasive and unnecessary procedures that increase the risk of complications and length of inpatient stays.24
The World Federation of the Deaf advocates that access to sign language is fundamental to realising human rights for deaf citizens.25 Recognition of this right underpins the intent of the NZSL Act 20062 The UNCRPD (Article 25) protects the right of persons with disabilities to access the highest attainable standards of health service provision and care without discrimination.26 New Zealand has ratified this convention and is accordingly obliged to implement (on an incremental basis) these measures in domestic law and policy. A 2003 cabinet paper on the NZSL Bill noted policies for DHBs must be comprehensive, specify the use of qualified NZSL interpreters and that DHB services and information are accessible.27 A 2013 Human Rights Commission enquiry into barriers for NZSL users found that while two-thirds of DHBs had policies for provision of interpreters, a reluctance of DHBs to book interpreters (for various reasons) was reportedly common.28 This was regarded as a breach of the Code of Health and Disability Services Consumers’ Rights which guarantees the right to effective communication, to receive full information, to make an informed choice and to give informed consent, and to have cultural needs taken into account.29 A key recommendation was that DHBs develop comprehensive NZSL interpreting and translation policies giving greater visibility to existing expectations (previously noted) for all DHBs.28 The NZSL Board Action plan (2016–2018) lists ‘access to services and information in NZSL’ as a priority, and will monitor the existence of NZSL policies within ‘core government information and services’ such as DHBs.30
The objectives of the study were to (i) identify accessibility issues from the perspective of deaf NZSL users in general, mental health and addiction secondary services; (ii) document the perspectives of healthcare personnel working with deaf people; (iii) use the findings as a basis for developing NZSL policy for the sub-region. The research project team, under the leadership of the Director of Disability Strategy and Performance, included a mental health portfolio lead, and a project expert lead contracted by the Service Integration and Development Unit who is a hearing NZSL user (the first author). A steering group comprising mainly deaf consumer representatives provided cultural perspective on data collection methods, analysis and recommendations. Third and fourth authors provided support with methodology, analysis and reporting. Ethical approval was obtained as per Capital and Coast District Health Board policy.3
Qualitative methods were used to enquire into how deaf people experience healthcare services, and how healthcare staff perceive their interactions with deaf people. Data collection from deaf people and their family members was mainly through focus groups (32 participants) and individual interviews (nine participants), facilitated in NZSL by hearing and deaf NZSL users. A semi-structured interview schedule encouraged discussion of personal experiences of health services; a qualified NZSL interpreter translated from NZSL to spoken English within the group discussion. This was audio recorded and later transcribed for analysis. Fifteen responses to an online survey provided supporting data.
Healthcare staff were invited to discuss their interactions with deaf NZSL users. Since this is not a frequent encounter for most professionals, the project lead raised awareness of the topic by facilitating several team education and training sessions. Various departments, managers and individuals known to have experience of working with deaf people were invited. In total, 57 professional staff attended five meetings where the topic of NZSL users in health services was discussed, eliciting perspective from those participants. Two professionals were subsequently interviewed, and 65 staff responded to an online survey.
The first and third authors independently read the transcribed interviews, survey data and notes to develop a thematic coding scheme, which identified recurring issues. This article reports key findings about deaf NZSL users’ interactions with healthcare staff and systems. Due to space constraints, we do not discuss access to mental health or first response emergency services.
Managing health appointments presents challenges for deaf people who do not use the phone. Participants reported that going to a health service in person is the only way they could make or change an appointment or request an interpreter, and that negotiating these encounters through speech and/or writing is difficult. Digital communication modes (email, texting, Video Interpreting Service) were noted as useful alternatives, however these are not commonly used in most healthcare settings, and they require a level of confidence in written English, digital literacy and internet access that is not available to many deaf people. Another sensory barrier noted was the requirement to speak (and hear) through an intercom to enter a delivery ward after hours, causing delays to entry.Without visual alert systems, medical waiting rooms (eg, outpatient clinics) present difficulties for deaf people; a common strategy they report is watching reception staff intently to try to discern when their name is being called. Even in cases when a deaf person informs reception staff of being deaf and asks to be alerted, effective accommodation is rare. One person describes an experience at a hospital:
“I think I missed the call of our name, as I was focused on my son. We’d been waiting for hours, watching every single movement from the medical staff in case I might see them calling my name, lip-reading from a distance”.
Use of interpreters
Professional interpreters play a crucial role in facilitating communication between deaf NZSL users and healthcare personnel, by increasing the deaf person’s capacity to provide and understand information relevant to diagnosis and treatment recommendations. Participants reported many instances in which interpreters were not provided, leaving them feeling disempowered. Interviews with DHB staff and deaf NZSL users revealed that staff seemed unaware of the risks of not using professional interpreters and regularly used communication strategies such as writing (problematic, given literacy levels among deaf NZSL users), gesturing or asking an accompanying family member or friend to mediate communication. DHB staff also reported using texting and email to communicate with deaf patients about health information. A deaf participant described their response to the use of written communication in a consultation: “
I don’t get the complete information, there’s not much detail or elaboration, and they don’t want to write everything down on a piece of paper… I need to be aware of all the information because it’s my body and it’s my right to know what’s going on and what they’re giving me”.
Some deaf people felt that they were expected to rely on family members as interpreters, even though they were neither fluent enough in NZSL nor necessarily able or inclined to render medical information accurately and fully to the deaf person. One person recounted:
“You don’t get the information you want, plus it’s like going through four different people. I have to explain it to my mum, they explain to the nurse, then the nurse to my mum and my mum to me, then me to my (deaf) partner!”
Professionals were concerned about the current financial constraints of the DHBs and often chose family and friends to mediate communication, without an awareness of the risks of doing so. When family members are not present, this leaves deaf people without an interpreter and in a vulnerable position. Several deaf people told of medical staff asking their children to interpret for them;deaf participants felt strongly that such practices were inappropriate and in breach of their right to accessible healthcare.
It was noted that family members acting as interpreters, even when initiated by a deaf person, can restrict free exchange of information. One family member commented:
“Although my mum prefers us to interpret for her at her hospital appointments it’s striking that the doctor never asked if she would like an interpreter. I also wondered if the doctor should have been asking questions related to the side effects of medication but didn’t because it would’ve been embarrassing, as I’m her son.”
On the other hand, some deaf people reported preferring a family member for reasons such as being of an older generation unaccustomed to interpreters, discomfort with an interpreter’s presence at sensitive appointments such as an STI consultation, or feeling more comfortable communicating through someone familiar. Other participants mentioned instances when a health service had duly booked an interpreter, but they felt it was not really necessary, such as a routine mammogram.
During inpatient stays, interpreters are seldom present and NZSL users may experience stress due to exclusion from communication in the ward. One participant recalled:
“I didn’t understand what was going on, there was nobody at all talking to me, I was just waiting. It was very lonely”.
While participants described some nurses as ‘deaf friendly’, by taking time to write things down, gesture and improvise strategies to communicate, one person commented that “some nurses freaked out and didn’t know how to communicate with me. I was constantly having to explain to staff how to communicate with me as a deaf person”.
Shift handovers and doctor conferences conducted in front of deaf patients created frustration and anxiety:
“While other patients could be involved, all I could do was watch them talk about me while pointing to things on the chart—very frustrating.”
At the same time, professional participants in the study expressed willingness to learn more about NZSL users to improve their communication strategies. Both deaf and professional participants reported varied practices for arranging interpreters, and noted problems with availability. Some deaf people and a DHB staff member reported bypassing interpreter booking agencies to directly book freelance interpreters. In these instances, the deaf person or staff member felt they had more control over the booking process. Where appointments were pre-arranged, there was usually time to match an interpreter with the appointment. In unplanned or urgent presentations however, interpreters were difficult to arrange and consultations often proceeded without one in both primary and secondary care settings. Hospital staff described difficulties coordinating interpreter presence with doctor availability, and unclear lines of authority to book interpreters.
Provision of an interpreter for a deaf family member accompanying a patient was raised as a grey area for accessibility, such as the deaf spouse of a hearing woman in labour, or the deaf parent of a child patient. One deaf participant reported:
“When my wife was pregnant and we went to hospital there was no interpreter provided because I am ‘only the husband’. We lobbied for that with the hospital and they provided it, but it shouldn’t be up to the patient to lobby for their rights”.
Consent and treatment compliance
Deaf participants described being in ED or a ward and feeling that staff made no attempt to explain procedures that were about to happen or to ascertain consent. One participant recalled:
“They took me to theatre to put antibiotics into my heart but I wasn’t aware of what they were going to do so I told them I wasn’t happy to go ahead until I fully understood what was going on. I was uneasy that night, until the next day they explained with an interpreter, then I was okay to go ahead with the procedure”.
While incidents like this are relatively rare, deaf people often do not have the confidence (or are too ill) to question their care and advocate for full communication. Instead, they accept procedures with little understanding about what is going on, often leading to considerable distress. Staff acknowledged that fully informed consent for procedures was not always obtained. Time constraints were also cited by staff as an obstacle to good practice; one staff member involved in administering ECGs said she never really gained full consent from her deaf patients or knew whether they used NZSL because, “with a 15 minute appointment slot you don’t have the time to find out”. Another reason was that they simply did not know how to gain informed consent from a deaf patient, or appreciate the risks of not doing so.
Deaf participants reported discontinuing treatment when they did not understand why they needed to take medication long-term or undergo follow-up procedures (such as regular blood tests). Reluctance to attend repeat procedures is perhaps exacerbated by difficult communication at each encounter. In one case, a deaf woman suffered a stroke after assuming that she only needed to take the prescribed blood pressure medication until it ran out, as with antibiotics. The resulting stroke required inpatient and outpatient rehabilitation over a number of years. This miscommunication occurred at a GP where no interpreter was used. This case demonstrates the risks of not communicating with a patient in their first language and the high costs to individuals and the DHB associated with a lack of understanding and thus compliance with treatment recommendations.
Access to printed health information
Many deaf participants had struggled to understand printed health information such as brochures or instructions. Some asked family members to explain written material, while others could not access it at all. Many alluded to gaps in their health literacy and English literacy, indicating the need for information to be translated into NZSL: “I read it again and again and sometimes understand it... Deaf people miss out and don’t know about things such as high blood pressure and the link to having a stroke, for example, they don’t understand this”.
Deaf participants expressed the importance of healthcare staff recognising their identity as culturally deaf sign language users. When deaf people perceive this recognition, they describe feeling more satisfied with a health consultation even without an interpreter. Many described instances when they felt devalued by comments or behaviours from health professionals that reflected a medicalised view of their deafness as a deficit or infirmity. A common annoyance was a sign reading ‘hearing impaired’ placed above their bed. Most participants rejected this label, and said they would prefer a sign reading, ‘NZSL user’, or ‘deaf’. They noted that staff’s response to the sign by speaking loudly is unhelpful.
Another example of deficit framing occurred during a newborn hearing screening, when a screener told a deaf mother that her baby had passed the test. She reflected:
“What if the baby had been deaf? Would that be a fail? Am I a failure as a deaf person? Little things like this affect me as it shows a cultural attitude of negativity towards deaf people that needs to change”.
Negative consequences for treatment can ensue when a deaf person is not viewed within a sociocultural context.31 One example reported involved a standardised assessment tool being used to determine a deaf person’s capacity for independent functioning. Clinicians concluded that because the deaf person was unable to answer certain questions, he had a reduced capacity for functioning. With awareness of this person’s educational and language background, his performance on an English-based test might have been understood in terms of language and cultural difference rather than a functional capacity deficit.
Barriers exist at multiple points for deaf NZSL users in health services, echoing issues described for deaf people in similarly economically developed countries.32 Deaf NZSL users report difficulty making and managing appointments at services that rely on auditory interfaces. For various reasons, professional interpreters are often absent in consultations, and assumptions are made by practitioners that lip-reading, writing and family/friend ‘interpreters’ will suffice. Although well-intentioned, staff are not always aware of the risks of not communicating information in NZSL to obtain informed consent for procedures, whereas others are aware but cite time and fiscal pressures as systemic factors leading to non-ideal practices. The data indicate that the logistics of timely and consistent provision of NZSL interpreters in hospitals are complex (not fully canvassed here), and can result in deaf people waiting longer for treatment or accepting partial communication, especially for emergency presentations and inpatient stays. Use of existing video remote interpreting services has not been exploited as a potential solution. Lastly, deaf people report that they do not always follow treatment recommendations as a result of poor communication in consultations, compounded by health literacy gaps.
Inadequate provision of interpreters in healthcare is not unique to NZSL users, but mirrors local practice generally: a 2011 study of clinicians’ use of interpreters with limited English proficiency (LEP) patients in Wellington region DHBs concluded that they, “do perceive there to be clinical risk associated with the communication difficulties that they face with LEP patients, but despite this, rarely use trained interpreters. There is a clear mismatch between actual practice and the relatively high levels of awareness of policy, methods of accessing interpreters and the significance of communication difficulties for quality of care”.33 As also found in that study, clearly a mix of systemic factors compound deaf people’s disadvantaged position in healthcare, including staff attitudes and awareness, lack of policy and/or staff capacity to comply with it, budgetary constraints and workforce issues with NZSL interpreters.
Importantly, deaf participants framed their healthcare experiences in terms of not feeling recognised as NZSL users with a distinct language, sensory and cultural profile. Their accounts support international evidence that recognition of linguistic and cultural difference as a component of quality healthcare applies to sign language communities as much as to other minority language groups.
Accessing healthcare services, understanding information and interacting with healthcare personnel is problematic for many deaf NZSL users, partly due to health literacy and English literacy disadvantages, as well as a lack of provision for communication in their preferred modality of NZSL. Healthcare personnel are generally unfamiliar with the perspective of deaf people as members of a socio-cultural group and language minority, and the study finds that they inconsistently use professional NZSL interpreters to address language barriers. In part, systemic barriers hinder better use of interpreting services; the absence of clear DHB policy, strategy and resourcing means healthcare professionals may be ill-equipped to respond to deaf people presenting in health services. Findings from the study show that widespread use of ad hoc communication strategies (eg, lip-reading, writing, gesturing) pose demonstrated risks to health outcomes for deaf patients. Evidence from the study supports the DHBs to proceed with developing a NZSL five-year plan (in progress, involving a co-design approach between a deaf advisory group and the DHBs) for the sub-region. This research exemplifies issues likely to exist in other DHB regions and healthcare services and possible avenues to better ensuring deaf NZSL users’ right to access equitable healthcare.