3.1.1. Preferred Style of Communication

There were many positive experiences when individuals were provided with an in-house interpreter. Participants felt much more confident and secure when communicating with a healthcare provider when a translator was present [19, 21] and felt that they had better treatment outcomes as a result of improved communication [30]. Within the study carried out by Steinberg et al. [30], almost all participants reported feelings of improved communication, decision-making, and overall experience when using an interpreter. This was particularly the case when medically trained interpreters provided the most beneficial support [4]. Not only did the inclusion of an interpreter facilitate communication but some studies also reported wider benefits, such as being an advocate about deaf culture to medical staff [17], patient reassurance [24], improved decision making within consultation [19] and increased health provider engagement [19].

Other forms of communication were experienced within healthcare consultations, such as virtual interpretation services [19], friends and family acting as interpreters [16], lip reading or reliance on written forms of communication [14, 18]. However, most individuals preferred the on-site presence of an impartial interpreter [4, 12, 21, 24, 26].

Video remote interpreters were often used when on-site when interpreters were unavailable [14, 19, 24]. However, this was problematic, often due to a slow internet connection which led to freezing [19, 24], environmental barriers such as poor sound [14] and device setup [14].

Many individuals also had to rely upon friends or family members to act as interpreters [4, 13, 14, 20, 30]. Many preferred impartial interpreters, provided by the healthcare organisation for several reasons. For some, friends and family were there in a supportive role within the consultation, but it was felt that they were ‘taken advantage of’ [19, p. 52] and there was an expectation that they would provide interpretation [14, 19]. Both studies by Hall and Ballard [14] and James et al. [19] stated that some participants felt that children were inappropriately asked to interpret sensitive medical information which was inappropriate. Furthermore, friends and family are rarely trained in medical sign language or have poor health literacy themselves [14, 19]. This can result in insufficient or incorrect information being passed to patients or healthcare providers [20, 30]. Despite the difficulties often experienced with friends or family members acting as interpreters, some experiences were positive, and participants explained that friends and family were able to advocate for them, as well as provide emotional support when this was otherwise unavailable [16, 27].

Individuals also experienced the use of lip reading (speech reading) and written forms of communication as a replacement for on-site interpretation. Miscommunication was experienced through both of these methods, and the support was often considered as being insufficient [4, 15, 26, 28]. For example, James et al. [7, 19] reported a preference for using nonmedical terminology when communicating with deaf and hard-of-hearing patients, especially when written down. This was due to English not always being their first language [14] and/or lower levels of health literacy within the deaf community [12]. In the qualitative study conducted by Hall and Ballard [14], participants described poor handwriting, difficulties with English and medical terminology, incomplete information provided, and discomfort in writing leading to miscommunication when written language was relied upon. Participants in this study reported feeling as though the back and forth led to the medical professional feeling frustrated and receiving summarised, rather than detailed, information [14].

3.1.2. Lack of Access and Continuity of Care

The systems in place within healthcare organisations are what make translator services accessible or not, and all studies reported an inconsistency between communication support received and individual preferences, particularly in receiving alternative support outlined in the theme above. For many, interpreters were unavailable during medical appointments and hospital stays [12, 17, 21, 26–28] and this included hospital stays when giving birth [16]. Several studies evidenced the need for patients to book an interpreter themselves [7, 12, 19, 26, 30]. However, even the process of booking an interpreter was not straightforward [7, 17, 19, 22, 30] and in some cases led to feelings of distress [19]. In the study carried out by James et al. [19], participants waited up to 8 h in some cases for an interpreter to be available but most often, requests were declined, and interpreter services were completely unavailable. Individuals did not feel confident in broaching this with medical providers, and this led to delays in appointment scheduling [30]. One positive experience was outlined in the study carried out by Panko et al. [24] who described that the healthcare professional’s familiarity with one patient meant that an interpreter was scheduled for every visit ahead of time [24].

As well as the difficulties in accessing interpreters, there was inconsistency in who supported the patient on each visit. This inconsistent access to the same on-site interpreter led to poor continuity of care [16, 19, 24] and the inability to build rapport between the patient and interpreter [19]. This inconsistency of care often resulted in missing information and conflicting information being given to the patient [16]. Contrastingly, continuity of in-person interpretation, as opposed to virtual interpretation services, allowed for further familiarity and rapport building, and as described above, was the preferred method of communication as this allowed some patients to establish trust [19].

3.1.3. Trust

The issue of trust was multifaceted. For some, trust in their healthcare provider was heightened when using an interpreter as individuals were more confident with the health information received during their consultation [19, 23]. However, for others, adding a third person, whether this was an on-site or virtual, provided interpreter, a friend or a family member, into sensitive medical appointments led to feelings of mistrust and violation of privacy [4, 14, 18, 26, 27, 30] or concerns that the interpreter might misinterpret information [12, 28]. There was also concern that medical information would be shared intentionally, or unintentionally, with the wider deaf community [19] and a fear of judgement from the interpreter [19]. In a survey completed by 811 deaf patients, 73% of participants felt that the presence of an interpreter did not impact the medical information disclosed to their healthcare professionals [23]. Of those who did disclose less during medical consultations in the presence of an interpreter, this was partly impacted by the interpreter’s signing ability [23]. Individuals also felt that family, particularly parents, were overprotective of them during these consultations and spoke on behalf of their deaf (adult) child [20]. This led to mistrust that information was not passed on appropriately [20].

3.2.1. Disconnected Language

There was often a disconnection between the deaf patient and healthcare provider through the language they used, including body language and consultation style. Many studies reported patients feeling as though healthcare professionals did not consider the impact of their own language and power differentiation on the consultation, particularly in the absence of an interpreter [19]. Individuals felt that, at times, communication with healthcare professionals was hindered as they spoke too quickly [18], wore a mask to cover their face [18, 28], spoke too loudly [13], were impatient [28], or their accent impacted understanding [13, 18]. In a study by Reeves and Kokoruwe [26], participants noted that successful communication was achieved with a nonsigning healthcare professional when they took the time to understand the patient’s individual communication needs [26]. Participants within reviewed studies recommended that healthcare professionals should repeat information [7, 13], make sure that the patient understands the information given to them, particularly when using medical terminology which can hinder understanding [18, 21, 28], remove face masks [7], use facial expressions to support communication [30, 28], provide in-depth information [24], be patient and not rush the consultation [4, 13, 24], use visual aids, notes or gestures [4, 13, 27], answer all questions [24] and articulate words clearly [30].

Many studies evidenced the way in which healthcare professionals conducted appointments when an interpreter was present, often speaking directly to the interpreter, or other person in the room, as opposed to the patient themselves [18, 20, 29]. This led to feelings of exclusion and being treated like a child or someone with cognitive impairment [20, 29]. Reeves and Kokoruwe [26] reported that deaf patients were more likely to feel as though their GP did not listen to them, did not treat them with courtesy or respect and felt that they were wasting their time compared to a national comparative sample [26]. Participants felt a lack of compassion and sensitivity from healthcare professionals [18] and felt as though the health professional kept the consultation shorter than they would for hearing patients [18, 20, 26]. It was recommended that the healthcare professional should face the patient throughout the consultation [7, 21].

The lack of shared language and consultation style between patient and medical professional led to negative feelings of patient’s own health ‘knowledge, behaviours and attitudes’ [30, p. 735]. This lack of shared language also led to feelings of frustration, mistrust and fear caused by a desire to communicate vs. the actual ability to communicate [4, 13, 18, 29]. In some cases, it also led to avoidance of sharing communication barriers with health professionals [13]. There were barriers which meant some individuals felt uncomfortable asking healthcare professionals to repeat themselves or to explain further [20, 30]. It was also often perceived that healthcare workers did not have time to put these measures into place within their own communication, primarily through lack of time but this increased feelings of discrimination and unease [19, 29]. It led to mistrust and disrespect through a lack of understanding of their needs [7, 14, 18, 19, 26, 29].

3.2.2. Disempowerment

Many patients discussed feelings of disempowerment and a lack of autonomy in relation to their health. Through a lack of understanding of deafness, or deaf culture, appropriate information may not be offered, or alternatively, involvement in decision-making may not happen [18, 29, 30]. This was often caused through a lack of understanding from staff within healthcare organisations or staff not being able to communicate effectively through sign language [17, 29]. While most feelings of disempowerment arose when interpreters were not present, participants in the study conducted by Hall and Ballard [14] discussed feeling a lack of autonomy, specifically when friends and family were interpreting for them, as they often left them out of communication and out of decision-making.

Through disjointed cultural understanding of deafness, individuals often adapted their own behaviour. However, this behaviour could be seen as hostile and threaten the relationship between the patient and healthcare professional [29]. Some studies reported that people did not want to clarify their understanding to/from medical professionals [13] through ‘shyness, lack of confidence, or appearing ignorant’ [20, p. 382], feeling ‘stupid’ when attempting to speak English [18, p. 358], withdrawing [18, 25] or not knowing what to ask [30]. Participants often assumed that their healthcare provider would tell them everything they needed to know without asking additional questions, and therefore did not seek further information voluntarily [30].

The virtual environment in which an individual needs to access healthcare systems was also disempowering. For example, booking appointments could be problematic [4, 13, 17, 18, 28, 31], particularly via telephone [13, 17, 18] and through automated systems [18]. Some relied on family members or friends to make these calls [17]. In one positive example, an email address was provided which afforded the patient ‘independence and equality’ [17, p. 748]. One paper specifically focussed on telehealth consultations [22]. Of the 99 participants who completed the survey, 66% experienced challenges with communication during these appointments. Almost all participants preferred to see their healthcare professional on the screen (97%) to aid lip reading and body language interpretation; however, poor video quality, chat/email issues, difficulty obtaining health information and advice and difficulty with interpreters negatively impacted the quality of these consultations [22].

Participants also discussed the huge role of the environment in feelings of inequity, particularly inequities faced within waiting rooms [13, 17, 18, 20]. Participants within the qualitative study conducted by Hulme et al. [17] highlighted the inappropriate layout of the waiting area which led to patients mistrusting the speaker system [13, 17]. Individuals worried that they would miss their appointment through this system [17, 18] or not know the correct queue to stand in [20].

Over time, this lack of cultural competence within the built, and nonbuilt, environment led to patients withdrawing from the healthcare system [25, 28], a lack of understanding of the patient’s own medical history [20] and fear and helplessness within these processes [25, 29]. Participants in one study reported feeling ‘helpless and dependent on the hearing’ [25, p. 4]. However, deaf patients have the right to be active participants in their own health decision-making, allowing them to manage their own health [29].

However, individuals whose medical practitioner had some knowledge of deafness/deaf culture were preferred [4, 14, 21, 26, 29] with patients willing to travel further to connect with these practitioners [30]. Participants in the study conducted by Sirch et al. [29] did not expect healthcare professionals to understand sign language, and they did expect them to be informed about deafness and the deaf culture. Due to this lack of cultural understanding, patient characteristics can be misunderstood, such as their speech, tone and attitude [29].

3.2.3. Misinformation Leading to Unintended Health Consequences

Miscommunication between the healthcare professional to patient often led to unintended health consequences. This miscommunication was commonly experienced through lack of support provided, nonmedically trained interpreters being available, or only partial information being passed on [4, 12, 15, 16, 24]. These unintended consequences were far-reaching and included medical and surgical procedures being carried out without understanding or consent [24, 28, 30], lack of understanding of aftercare following hospital discharge [7, 19, 26], lack of understanding about their situation, illness or medication received [16, 18, 26, 28, 30] and poor adherence to medical treatment and medication [7, 15, 20, 26, 27, 31]. Individuals did not feel empowered to seek understanding on these issues and this inadequate information received led to confusion when symptoms remanifested [7] and feelings of fear [4], and caused distress and discomfort [30] and embarrassment and anxiety [13, 18, 30]. In most extreme cases, lack of understanding through poor communication led to termination of pregnancy [30] and loss of a baby [16]. Furthermore, in a case study presented by Haricharan et al. [15], the patient described using a friend, who was hard-of-hearing herself, to act as an interpreter in the absence of one. Her friend did not understand the medication prescribed by the medical professional and could not pass on adequate information to the patient. As such, the patient did not use this medication which may have prevented her from becoming HIV-positive [15]. Not being able to effectively communicate with medical professionals led to feelings of isolation, shame and confusion [20]. This could lead to the consequence of nonattendance [25].