Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2015

Paid Support Workers for Adults with Intellectual Disabilities; Their Current Knowledge of Hearing Loss and Future Training Needs Lynzee McShea*, John Fulton† and Catherine Hayes† *Audiology Department, Sunderland Royal Hospital, Sunderland, Tyne and Wear, UK; †Faculty of Applied Sciences, University of Sunderland, Sunderland, UK

Accepted for publication 3 February 2015

Background People with intellectual disabilities are more likely to have hearing loss than the general population. For those unable to self-advocate, the responsibility of detection and management falls to their caregivers. Methods This is the first cycle of a project using action research methodology to improve services. Twenty care workers were interviewed to understand their knowledge of hearing loss and hearing aids. Themes were generated using thematic analysis. Findings This group was better qualified than their peers but received minimal training in hearing loss. They

Introduction Public Health England (2013) estimated there are over 1 million people with intellectual disabilities in England. The exact prevalence of hearing loss is unknown, although the most commonly used estimate is 40% (Carvill 2001), which is significantly higher than the prevalence of hearing loss in the general population. For high-risk groups, such as individuals with Down’s Syndrome, even 40% is likely to be an underestimate (Radhakrishnan 2010). It is clear that audiological services are of vital importance to this group (Timehin & Timehin 2004). Despite this need, the majority of this population have never even had their hearing tested (Hardy et al. 2011) and may be living with an undiagnosed hearing loss. This is compared to the general population, where it is estimated that 7% of people are living with undiagnosed hearing loss (Action on Hearing Loss, 2014). © 2015 John Wiley & Sons Ltd

were unable to accurately estimate expected prevalence and had a negative perception of hearing aids. Only 7% of service users were known to have hearing loss. Conclusions Current training is not sufficient to provide the skills for detection and management of hearing problems. This group had clear ideas on methods of learning. Working in collaboration is necessary to achieve long-term change to practice. Keywords: awareness, care worker, hearing, support, training

For any individual with hearing loss that is unrecognized or undiagnosed, quality of life can be affected. It may affect the potential of an individual and limit their capacity to maximize their potential (Van Schrojenstein Lantman-de Valk 2005). There is also an association between sensory impairments and the presentation of challenging behaviour in people with intellectual disabilities (Timehin & Timehin 2004). Hearing loss may cause miscommunication, frustration or fear, which could then lead to challenging behaviour. By diagnosing and managing hearing loss with hearing aids, challenging behaviour can be dramatically reduced (McShea et al. 2014). As well as being preferable for the individual concerned, reduction of challenging behaviour also benefits the individual’s family and supporters. For commissioners of services, it means expensive packages of care can be withdrawn or significantly reduced (ibid). Miscommunication also makes the role of support workers more difficult, tasks 10.1111/jar.12201

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take longer and there is an element of ‘best guessing’ when trying to meet the needs of service users (Thurman 2011). Despite hearing loss being so common in this group, high levels of undetected hearing difficulty remain. A key reason is diagnostic overshadowing, where behaviours or symptoms of hearing loss are explained away as part of the person’s intellectual disability (Miller & Kiani 2008). There are many overlapping features of hearing loss and intellectual disability, for example reduced comprehension and communication, frustration, and reduced social engagement (Pryce & Gooberman-Hill 2012). The term ‘double jeopardy’ describes this coexistence (Williams & Austen 2000). The relationship between intellectual disability and hearing loss is thought to be multiplicative rather than additive (Carvill 2001), that is the combined effect of having both ‘conditions’ is greater than their sum. Therefore, it is even more imperative that hearing loss is not underestimated by family and paid carers of those with intellectual disabilities. In the UK, access to primary care (and subsequently, to specialist services) requires an element of self-referral and motivation (Newsam et al. 2010). People with intellectual disabilities may not have the communication skills to seek referral for their own health needs, or the necessary awareness. Therefore, the onus is on another relevant individual close to that person (usually the ‘caregiver’) to recognize the problem and access appropriate services. Clearly, this relies on effective communication (Kyle et al. 2009) and the capacity of a caregiver to identify and address the issue in the first place. However, carers often misjudge the communication abilities of individuals (Banat et al. 2002). The situation is compounded by the fact that the health need in question is hearing loss, which can affect communication in its own right. There is plentiful evidence in the literature (e.g. Kerr et al. 2003) to suggest that most caregivers cannot recognize hearing loss in those they support. Crucially, the more severe an intellectual disability, the more likely a hearing loss is to be overlooked (Carvill 2001). Diagnostic overshadowing is one of the main reasons why hearing loss is not detected by caregivers. However, there are other factors which result in low uptake of audiology services for people with intellectual disabilities. Role conflict and ambiguity (Windley & Chapman 2010) may mean caregivers do not see detection of hearing loss as their responsibility. Even if a hearing loss is suspected by staff, its effect is often underestimated (Pryce 2011) or not seen as a priority

compared to other health needs (Newsam et al. 2010). This may mean that referral is not sought as the benefits of better hearing are perceived to be minimal. For the small number of individuals who have actually accessed services and been diagnosed with hearing loss, there are also issues in the aftercare provided by care staff. The competence of caregivers regarding the use and maintenance of hearing aids has been questioned (Miller & Kiani 2008). Despite the significant responsibilities placed on caregivers regarding access to services and aftercare following diagnosis, the majority have had no formal training in hearing loss or related issues (Newsam et al. 2010). There is only one study in the literature which has attempted to train caregivers in awareness of hearing loss (McMillan et al. 2000). Although a significant increase in knowledge was demonstrated, there was no evidence of improvement in practice. Currently, the issue can be viewed from two perspectives: from the health professional (e.g. Audiologist) and the individual (or their caregiver). The audiologist has the benefit of knowledge surrounding hearing loss, its prevalence and the worth of hearing aids. From this perspective, non-compliance may seem difficult to understand. There appears to be disparity between the caregiver (who knows the person best) and the audiologist (who knows hearing problems best). Newsam et al. (2010) conducted semi-structured interviews with 17 paid caregivers to assess awareness of issues relating to sensory impairment for people with intellectual disabilities. They found that although caregivers were aware of the increased risk, they felt other healthcare needs were more important. This suggests they may not have an understanding of the true impact and consequences of hearing loss. The author also found a lack of accountability, in that although caregivers were best placed to meet the needs of their service users, little formal structure existed to facilitate this. This study was completed in Scotland, where guidelines exist for the assessment and management of hearing loss in people with intellectual disabilities (National Health Service Scotland, 2009). No such guidelines exist yet in England, nor are there any guidelines available through the National Institute for Health and Care Excellence (NICE) in the UK. No research has been published that looks specifically at the caregiver perspective of hearing loss and hearing aids in England. This was the aim of this study – to interview paid care workers in the north-east England in order to understand the issues surrounding detection and management of hearing loss from their perspective with © 2015 John Wiley & Sons Ltd

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a view to future collaborative working, to address the issues identified and transform practice.

Methods Design This study was the initial cycle of a larger project, using action research methodology. This collaborative approach was chosen in order to promote change to practice. The longer term aim of the project was to improve access to and aftercare from audiology services for individuals with intellectual disabilities. Locally, caregivers are recognized as key stakeholders in this process. However, as the literature identifies, there are barriers to this potential partnership including knowledge and accountability. An understanding of caregivers baseline knowledge, attitudes and beliefs was an important initial step, necessary to begin the process of collaborative change. This was achieved using qualitative methods (semi-structured interviews interpreted using thematic analysis). Some quantitative demographic information was asked of each participant, including their age, years of experience and highest relevant qualification.

Participants and recruitment Participant recruitment occurred during October 2013– January 2014. Written contract was made with facilities in the Sunderland area registered to provide support/ care to people with intellectual disabilities (n = 40). This included day centres as well as residential facilities, as despite a move towards personalized care, such facilities are still popular (Hall 2011). This contact included consent forms and information about the study. A return rate of 18% was achieved (7/40). One facility responded outside of the timescale to be included. Each of the six remaining facilities was included in the study. Contact was established, and arrangements were made to visit each one at a time convenient to them. Five were residential facilities; one was a day centre. Twenty paid care workers participated in this study who identified themselves as either ‘support workers’ or ‘residential officers’. All were employed by the local Council or by a national social care charity.

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them. There was no pre-selection of participants. In some instances, the general manager nominated individuals to participate during the visit. In others, those who were not directly supporting individuals at the time of the visit were asked to take part or volunteered themselves. It is possible that managers may have chosen the most enthusiastic or knowledgeable individuals to represent their service. However, the qualitative findings from this study are presented to understand the experience of individuals and are not intended to be generalized. Quantitative demographic information was obtained from all participants, and later analysis suggested the participants were actually a representative sample of the general work force. Interviews were conducted on a semi-structured basis as described by Merriam (2014). In each interview, key areas were addressed, including an explanation of the care worker’s perceived role, knowledge of hearing loss, hearing aids and prior training. These areas were chosen in order to explore the possible reasons for the barriers to access and aftercare experienced locally and evident in the literature. Question order and the wording of questions were flexible to promote discussion and full exploration of issues. For example, if a participant was describing their role and indicated that it was challenging due to a perceived lack of training and support, training would then be discussed. Instead, if they indicated communication affected their ability to perform their role, it would be more appropriate to explore issues around hearing next. All participants were encouraged to speak freely and openly about their experiences. A full copy of the basic interview schedule used with each participant is included (see Appendix S1).

Ethics Time was spent discussing the purpose and nature of the visit with each participant prior to interview. Individual written consent forms were completed. These included notice of the use of a recording device and verbatim quotations. Information sheets were available throughout the visit, along with the opportunity to ask questions and withdraw at any time. Formal ethical approval was granted via The University of Sunderland.

Analysis Interview format Visits and interviews were conducted during February and March 2014. As well as being more convenient, such visits allowed staff to speak in an environment familiar to © 2015 John Wiley & Sons Ltd

A thematic analysis was undertaken as described by Norton (2009). Each interview was recorded, and familiarization with the data involved listening to the audio recordings and manually transcribing them into a

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word processor document. Each transcript was anonymized to preserve confidentiality and was read several times to promote familiarity. Next, the data were coded; where a unit of information was given a label to identify commonly occurring ideas. Each data item was labelled in this way, with the research aims in mind. After multiple codes were identified, the next task was to identify trends or themes within these. The data were re-read and condensed systematically. For example, the initial codes of ‘advocacy’ and ‘health facilitation’ became part of an ‘empowerment’ theme. Themes were reviewed and checked for credibility to ensure they correlated with the codes and the original data. The lead researcher discussed these themes with the co-authors, and the themes were further collapsed into central themes (for example, ‘empowerment’ was collapsed into the central theme of ‘motivation and expectations’). The central themes were named and verified by cross-checking with the original transcripts to ensure the themes bore relation to the stories participants told. Discussion amongst all of the authors facilitated this. The sample size of 20 was relatively large for a study of this nature. However, the second phase of this action research involves working more closely with these participants, and it was felt important to encourage good relationships and understand the viewpoints of a wider group. The themes presented are not just those identified by the majority of participants, but some quantification has been provided to supplement the findings. Qualitative and quantitative approaches are seen as distinct and very different, and simply put, quantitative approaches involve numbers and qualitative approaches involve words. In qualitative approaches, a theme or category is usually not counted. However, Maxwell suggests that quantification is not antagonistic to qualitative research and indicating the range of occurrence of categories can often give credibility to the findings of a study (Maxwell 2010).

Findings Twenty members of staff were interviewed across the six facilities. The interview sample in terms of gender and age is representative of the wider workforce (Table 1): It appears that the interviewees overall have a much higher level of qualification than other social care workers in the region. Almost every interviewee had a National Vocational Qualification (NVQ) in Health and Social Care, and all were engaged in mandatory training at their facility, which mainly focused around health

and safety (infection control, food hygiene, moving and handling etc.). Twenty percentage of staff had a qualification related to hearing loss [three had British Sign Language Level 1 or 2, one had a certificate in Deaf Awareness from the Council for the Advancement of Communication with Deaf People (CACDP)]. After the first round of coding, 27 separate codes were identified which ultimately generated five central themes (see Table 2): 1. Motivation and expectations 2. Prevalence and experience of hearing loss 3. Knowledge of hearing, audiology and hearing aids 4. Communication 5. Training and future needs

Motivation and expectations The variety and challenge of the support worker role was mentioned by most as a positive aspect (n = 14). People clearly understood that their actions had a direct impact on service users and were able to demonstrate a link between inputs from them and outputs for the people they support: I enjoy working with the service users. I enjoy hands on work. I get satisfaction from that, seeing how their lives improve. They get to do things they wouldn’t get to do without us. Interviewee 15 The main incentive from a staff perspective was the well-being and satisfaction of service users. They were rewarded by seeing them happy and content. Staff described similar roles and expectations. They described care duties such as personal care and feeding. However, they were also aware of additional responsibilities such as financial support and promotion of independence. Table 1 A comparison between the interview sample and regional data North-east data taken from Skills for Care (2013) Adult social care workers in north-east

Interview sample Gender Age Experience Social care qualification

90% female, 10% male 48 years old (range 23–62) 15 years (range 3–34) 95% (Level 2 – 20%) (Level 3 – 65%)

84% female, 16% male 41 years old No data 69% (Level 2 – 27%) (Level 3 – 18%)

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Table 2 Reducing the codes to themes Codes

Themes

Central themes

Pay Role Reasons for joining Advocacy Health facilitation Rewards Changes in employment Prevalence Hearing loss Past experience Family Hearing aids Hearing Medical Residents choice Documentation Community Communication Service users Challenging behaviour Challenges Employers Training Facilities Training needs Job title Qualifications

Requirements

Motivation and expectations

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I find that the one person that knows more about these people than anybody, doctors, their family, is the care worker because they are with them all the time. Interviewee 11

Empowerment

Prevalence and experience of hearing loss Prior exposure

Prevalence and experience of hearing loss

Familiarity Hearing

Knowledge of hearing, audiology and hearing aids

Prior knowledge Communication

Communication

Training and future needs

Gaps in knowledge

People often say write down what you do, you just couldn’t. From cutting their toenails to sitting in meetings, to sitting with them all day in hospital waiting for an appointment. Interviewee 11 Getting them to live their life to the fullest they can, knowing what they are capable of andgetting them to do a little bit more. Interviewee 13 Many staff spoke of the need to advocate for their service users, regarding health needs (n = 15), and choice (n = 11). They were aware that it was their responsibility to detect problems in those unable to do so themselves. We are their eyes and their ears. Interviewee 3 © 2015 John Wiley & Sons Ltd

I haven’t really thought about it. I mean people we come across, it hasn’t been an issue. Interviewee 2 If it’s not written down you wouldn’t know. Interviewee 4

Barriers

Resources

Every interviewee was asked to estimate the prevalence of hearing loss in people with intellectual disabilities as a percentage. The median estimate was 25%, although these varied from 2 to 80%. A fifth of staff gave responses of 50% or above. However, almost every interviewee (n = 18) said they had only ever known one or two individuals with a hearing loss in their whole career.

Even for the few service users with known hearing problems, this diagnosis was often doubted and their presenting symptoms attributed to behaviour: We have a lady here that has a syndrome and one of the complications is hearing loss. And she can use that to her best advantage I have to say. Interviewee 1 I wasn’t sure if he was really deaf or not, because I’ve spoken to him when he wasn’t looking and he seems to have responded, but whether that’s been fluke. Some like to pull the wool you know. Interviewee 4 Of course, it may be that the people supported by these staff have satisfactory hearing. However, 111 individuals are supported by staff across these facilities, and at the time of these visits, only eight individuals were known to have some level of hearing loss. This 7% prevalence is below the estimated prevalence of 40% suggesting there is significant undetected hearing loss in this group. Sometimes the word deafness can be misinterpreted, and people often assume to be ‘deaf’ means to be without hearing. For this reason, care was taken to use

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the term hearing loss and not deafness throughout all interviews, but this seemed to be a fundamental misinterpretation. A seemingly innocuous change in terminology seems to have significant consequences. Three staff members demonstrated awareness of the distinction, and their opinions differed as a result: I haven’t worked with anyone that’s profoundly deaf that I know of, but that could be because I’m not aware. Interviewee 10 I think everyone here does hear, but obviously we don’t know how clear. Interviewee 12 I don’t know any totally deaf service users, but I do know a lot who will repeat because they can’t hear you, so it is quite a lot. Interviewee 9

Knowledge of hearing, audiology and hearing aids Not only did people feel unable to detect hearing problems, some believed it would be impossible to verify hearing loss in someone with an intellectual disability (n = 8): To be honest you don’t know, cos a lot of our guests wouldn’t be able to go through a hearing test. Interviewee 1 Coupled with doubts around testing, was a very negative perception of hearing aids. Every staff member who mentioned hearing aids was critical of them (n = 14). Not a single positive comment was mentioned. Few staff members had ever worked with service users who wore hearing aids (n = 5). The limited amount of experience usually came from previous employment in elderly care (n = 3). For most interviewees, their only experience of hearing aids was from family members wearing them, usually their parents (n = 8). Feedback, or ‘whistling’ from hearing aids, was a concern raised several times (n = 7). This made staff to question whether the hearing aid was working properly. Some had a basic knowledge of battery insertion and cleaning (n = 5), but beyond this, staff lacked the necessary skills around earmould insertion, troubleshooting and appropriate use.

Communication Effective communication was the greatest challenge for staff and was mentioned by all. Staff described a variety of communication strategies used, including symbols (n = 3), pictures (n = 5), body language and objects of reference (each n = 2). Awareness of hearing and oral communication was omitted. Lots of communication strategies were being tried spontaneously. Some staff spoke of customized tools, suggesting there is a clear desire to want to communicate and make this as effective as possible. They gave examples of communication training they had had, even from previous employment, suggesting some retention of knowledge. However, their communication training did not cover hearing: We do an awful lot of things around sensory, nothing about hearing. Interviewee 1 I don’t know anything about hearing. Interviewee 7

Training and future needs They do understand the need for training and welcome an opportunity to learn. However, many did not feel hearing training was necessary for them as they did not support anyone with hearing loss (n = 12): If we thought we needed it we would go for it Interviewee 16 After discussing the issue further, interviewees provided an insight into the areas they felt they lacked knowledge (Table 3): Staff were also asked about their preferences for training. Some felt that the key to engaging people was in the personalization of training (n = 11) and suggested the use of stories to provide an emotional connection (n = 4). The training that resonated most with people was that which had involved simulation and experience. There was an overwhelming preference for practical, hands on sessions with group activities (n = 18). Although some were against e-learning, as they found it a ‘tickbox’ exercise, others saw the benefit it might bring for at least part of the training, regarding standardization and dissemination on a wider scale. There was no clear preference over whether training © 2015 John Wiley & Sons Ltd

Journal of Applied Research in Intellectual Disabilities

Table 3 Training needs suggested by staff Hearing loss

Hearing aids

Ear care Physical symptoms of hearing loss Behavioural clues What does hearing loss sound like? How do we hear? Psychological aspects of hearing loss Hearing and communication tactics

Insertion Cleanliness Feedback/whistling Troubleshooting/servicing How hearing aids work Expected benefits and limitations Types of hearing aid

should be in house or at an external facility. Some thought being at the service user’s home would be distracting, whilst others thought it would increase personalization and application. This latter opinion seems to be found in the literature most often (e.g. Windley & Chapman 2010). When interviews were drawing to a close, the interviewer shared the actual estimate of hearing loss prevalence with participants. Many interviewees asked spontaneously, out of their own interest (n = 12). Following this, staff began making interesting statements: It’s strange cos you don’t tend to associate the two but it could explain certain behaviours. Interviewee 10 Their hearing might be impairing their speech? Interviewee 6 Could not hearing cause the frustration we see in people? Interviewee 2 Once staff were aware of this possibility, they began to see the part hearing could play. This was also the case for one interviewee who had recently been through the process of diagnosis and treatment with a service user: I mean with X and what’s gone on here we’ve learnt so much. It’s been really interesting and helped us support her, so it’s brilliant really. It’s worth it. It’s helped us understand that she’s not just ignoring you; she really can’t hear what you’re © 2015 John Wiley & Sons Ltd

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saying. We communicate better. Now I pay more attention. Interviewee 14

Discussion Research from the literature (e.g. Hild et al. 2008) suggests that the access to audiology for people with intellectual disabilities is limited and that fewer people have a diagnosis of hearing loss than expected. Consequently, there is a low uptake of hearing aids and aftercare is affected. This study describes a cycle of action research designed to explore these issues. Prior to interviewing staff, it was not clear what the local awareness of hearing loss was and how staff viewed hearing aids, the most common management option. Until this baseline knowledge was identified, it would be difficult to engage in future partnership. In their study, Newsam et al. (2010) suggested one of the key issues was a lack of accountability: that caregivers were aware of the increased prevalence of hearing loss, but did not feel best placed to act upon this. However, the staff members in this study were aware that their actions directly impact upon service users, and they display good teamwork with shared ownership of issues. They understood that meeting the health needs of the service users was their responsibility. Their motivation and job satisfaction centred on the happiness and well-being of their service users. Improved hearing of service users would increase this interaction and further this reward for staff. Their motivation highlights their caring nature and suggests non-detection or non-management of hearing loss is not due to a lack of compassion. This is important as staff attitude is one of the fundamentals of quality care (Skills for Care & Skills for Health, 2013). This study suggests instead that caregivers are lacking the skills in detecting problems in the first place, rather than lacking responsibility or guidance to act on these suspicions. A move to the community has extended the role of a carer beyond simply caring. Although personal care is still important, staff have a central role promoting independence. They are aware of their responsibilities, again suggesting any omissions regarding hearing loss are not because their duties are not understood. The contrary seemed apparent; staff are passionate about advocating for their service users, and it is clear they trust their judgement when doing this, as they spend more time with their service users than anyone. They come to learn their habits and preferences, even when

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communication is difficult. In many circumstances, their judgement is accurate and appropriate. Haycox (1995) notes that staff have to rely on their own judgement far more in a community care environment. But what if they do not have the necessary skills to do this accurately? This study suggests staff do not have skills with respect to detection of hearing loss and hearing aid management. Work experience alone is not sufficient in providing this knowledge and experience. Advocacy without accurate knowledge could be of limited use and possibly detrimental to service users. Communication was cited as the main challenge of the support worker. Communication training was well established, and staff were able to describe a range of initiatives learned from prior training which suggests knowledge retention occurs. Despite their workload, staff are willing to engage with training and do benefit from it. However, in their communication training, there is a lack of information on hearing, and consequently, this is carried across into their daily practice. There is a definite opportunity for improvement here. Local communication training is carried out by Speech and Language Therapy – raising the possibility of an opportunity for collaboration. Many staff were unable to accurately estimate the prevalence of hearing loss in people with intellectual disabilities. The majority of staff significantly underestimated the number of people with intellectual disabilities living with hearing loss. They generally perceived hearing loss to be rare, and their estimations matched their observations in the workplace. Despite clues of hearing loss being apparent, they were explained away by diagnostic overshadowing. The current prevalence of 7% known hearing loss in these facilities suggests there is significant undetected hearing loss in this group. It would appear that there are people in these facilities who do have hearing problems and are presenting with symptoms, but due to a lack of knowledge, these symptoms are not being detected or are being misinterpreted. Several members of staff, without realizing, gave accounts of service users that suggested they did have a hearing problem, but staff interpreted these behaviours as ‘dishonest’. Eighty percentage of the participants supported individuals with high levels of need, unable to perform basic tasks independently, many with profound and multiple intellectual disabilities. The notion of service users acting up or consciously deceiving staff therefore seems unlikely. A more probable explanation is that many staff assume that to have a hearing loss means to be completely without hearing. Information on the spectrum of hearing loss is required, to educate staff that most individuals with hearing loss

will respond to some environmental sounds, but this does not necessarily mean they can hear other sounds clearly (such as speech). Some individuals overestimated the prevalence and therefore suggested the majority of individuals with intellectual disabilities will have hearing loss. Despite this opinion, they did not find it unusual that they supported no individuals with hearing loss. Almost all staff asserted that hearing loss is just not something they have ever come across. Although some had theoretical knowledge, the practical application was missing. It could be argued then, that correct knowledge of increased prevalence is of limited value if not translated to daily practice. This echoes the thoughts of McMillan et al. (2000), who provided the only recent training programme for paid carers regarding hearing loss in people with intellectual disabilities in the literature. Regardless of an individual’s opinion on prevalence, unless a hearing loss was known and documented, staff did not feel confident to detect it spontaneously themselves. This unconscious incompetence seems characteristic of the Dunning–Kruger effect (Kruger & Dunning 1999); that is, staff lack the necessary skills to evaluate their poor performance, because these are the same skills required to be competent in the first instance. Hodkinson & Issitt (1995) suggest the competence of a caring professional is determined by their interactions and experiences. If carers are part of a community of practice that as a whole does not encounter hearing loss frequently and does not expect to do so, this view is reinforced and becomes difficult to break out of almost like a ‘script’ (Davies et al. 2000). This cultural viewpoint can be difficult to transform (Langer 1997). This may also begin to explain why training courses have been shown to increase knowledge, but not the practical application of this knowledge in an individual’s own workplace (McMillan et al. 2000). These authors demonstrated that their training course was successful in improving awareness, but that this did not necessarily impact upon an individual’s ability to translate this into their daily interactions. There is limited evidence of hearing aid training in the literature, although our findings suggest this is needed. Every staff member who spoke about hearing aids did so with much negativity. They appeared to lack confidence in their own ability to manage hearing aids and the aid itself as a beneficial device. This lack of confidence affected their perseverance with hearing aids and ultimately may be reducing the number of © 2015 John Wiley & Sons Ltd

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successful outcomes. This echoes other findings in the literature, regarding misguided, pessimistic assumptions around hearing aids for people with intellectual disabilities (Meuwese-Jongejeugd et al. 2007). For service users newly fitted with hearing aids, this lack of confidence may affect a successful outcome and result in rejection of the device (Desjardins & Doherty 2009). Although this is the same for any patient group, the crucial difference here is that of informed choice. Many people with intellectual disabilities are reliant on their caregivers to make appropriate choices for them, based on their best interests and not on a misunderstanding of how to operate a device or how to clean it. Success of hearing aids relies on their perceived cost to benefit ratio. Consequences of poor hearing are less obvious in people with intellectual disabilities, who often have difficulty communicating for other reasons. What is more clear to staff are the perceived difficulties surrounding attending hospital and compliance with treatment. The outweighing of these negative assumptions over the perceived benefits influences help seeking or lack of it (Southall et al. 2010). Staff saw provision of hearing aids as a big investment on their part for little return. It is known that hearing aids require a significant period of acclimatization, particularly if a person has had untreated hearing loss for some time (Pryce 2011). When coupled with staff’s lack of understanding and confidence in the device, hearing aids were not always being given a fair trial. There is also a misconception found in this study and, generally, that many people with intellectual disabilities will be unable to complete a hearing test. It is not expected of staff to have a detailed knowledge of the different assessment methods available in audiology, but it is interesting that the assumption is that it would not be possible. If staff hold the belief that hearing professionals would be unable to detect hearing problems, it absolves them of responsibility too. How can these barriers be overcome? Kruger & Dunning (1999, p. 1131) suggest that ‘one way to make people recognize their incompetence is to make them competent’. This poor performance is not due to a lack of compassion or accountability, but a lack of knowledge. The staff involved in these interviews were relatively better qualified compared to their peers in the region in terms of generic health and social care qualifications. The statement related to training ‘if we thought we needed it we would go for it’ by participant 16 is poignant, because in essence, it summarizes the whole issue. Hearing professionals and research © 2015 John Wiley & Sons Ltd

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literature can provide evidence that staff do need training. But many staff themselves are not aware of this. Their current training is not sufficient to provide the skills necessary for detection and management of hearing problems, nor is this training provided elsewhere in a standardized, effective format. There is a need for training which specifically bridges the theory– practice gap, not just in audiology, but in other disciplines (e.g. Watters et al. 2012). This suggests there is a need for a generic training framework or model that could be adapted for different specialisms. For the audiology, this should include education around the high prevalence of hearing loss, ways to overcome diagnostic overshadowing and the reality of supporting an individual with hearing aids. An appreciation of emotional learning may be the key to promote longer term change. This is important, as it appears that work experience alone is not sufficient in providing evidence people can learn from. This suggests there is a need for activities which make the theoretical aspects of hearing loss come alive.

Limitations of the study In order to conduct these interviews in an ethical manner, it was necessary to brief people prior to interview about the nature the subject matter. This may have affected the reliability and truthfulness of the responses, for example indicating an interest in future training. Despite staff knowing in advance about the intended subject matter, many still highlighted their lack of knowledge, suggesting their responses were genuine. Another possible limitation was the type of facilities visited. Most were for people with high support needs. Only one facility supported residents living fairly independently with minimal support. However, many of the staff did circulate around a variety of establishments. It is also more difficult to fulfil social needs of those with the most profound general needs (Price 2013). It could therefore be argued that achievements with this group will then be relatively easy to transfer to those who have fewer needs. This research shows that significant levels of undetected hearing loss still occur in community environments, despite staff being aware of their responsibilities in detection and management. It demonstrates that many of the issues identified in the literature years ago are still concerns at the present time, such as difficulty detecting hearing loss (Kerr et al. 2003), misguided and pessimistic assumptions

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around hearing aids (Meuwese-Jongejeugd et al. 2007) and a knowledge deficit through work experience alone (McMillan et al. 2000). This study seeks to provide solutions to these issues, identified by those best placed to suggest them. Staff expressed a desire for training that involves interactive learning, personalization and emotional recognition. By understanding staff’s perspective, the present authors felt prepared to begin a collaborative journey that has remained necessary but lacking for so long. The next action research cycle in this study involved designing training to meet staff needs and the needs of audiology as a profession. The suggestions made by the participants in these interviews were incorporated into a training package, which was piloted by a wider group of caregivers in the summer of 2014. Translation to practice did occur, where individuals have been identified and diagnosed with hearing loss, as a direct result of the training (McShea 2015). Training like this is vital to raise practical and emotional awareness of the consequences of hearing loss and should now be delivered on a wider scale. Further research is also required to investigate attitudes and beliefs of primary care staff, responsible for referring individuals to audiology. It is a concern that although hearing assessment is included in annual health checks for people with intellectual disabilities, referral rates to audiology remain low. The quality and nature of these health checks be investigated.

Correspondence Any correspondence should be directed to Lynzee McShea, Audiology Department, Sunderland Royal Hospital, Kayll Road, Sunderland, Tyne and Wear SR4 7TP, UK (e-mail: [email protected]).

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Supporting information Additional Supporting Information may be found in the online version of this article: Appendix S1 Interview schedule.

Paid Support Workers for Adults with Intellectual Disabilities; Their Current Knowledge of Hearing Loss and Future Training Needs.

People with intellectual disabilities are more likely to have hearing loss than the general population. For those unable to self-advocate, the respons...
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