Summery

It is well documented that both ethnic/cultural differences as well as language differences complicate a satisfying and effective doctor-patient relationship. Although these ethnic/cultural and language differences are also present during communication between Deaf patients and their hearing physicians, hardly any research has been done on this subject. This research project tries to fill some of these gaps.

Hearing loss is not a rare disorder, approximately one child per 1000 is born deaf or severely hard of hearing. The number of people with hearing impairment increases with age to about 1.6 per 1000 in adolescents and to 88 per 1000 at the age of 65.

In order to distinguish between the clinical meaning of the term deaf and the cultural meaning of Deaf, we adopt the convention of referring to the latter with a capital D. When both deaf and hard of hearing people are addressed, the abbreviation DHH (Deaf and Hard of Hearing) is used.

Most healthcare workers are not aware of the specific issues they may encounter when caring for DHH patients. In contrast, DHH patients themselves report that they often experience barriers in healthcare.

Chapter 2 describes the communication challenges and medical, ethical and legal issues that a physician can face when caring for DHH children and children of DHH parents. Due to the communication barriers it is tempting to communicate primarily with the hearing child/ adult present and thereby exclude the DHH person. As a consequence, DHH children/ adolescents and/ or DHH parents may receive the necessary information not from their physician but from their hearing relative. It is up to the physician or healthcare worker to decide at what age and in which situations it is acceptable for parents or children to translate and when to bring in a professional interpreter. In order to obtain informed consent, it is almost always necessary to have a sign language or speech-to-text interpreter present. In all cases, but particularly in the case of DHH adolescents, privacy needs must be respected. DHH youngsters must be given the opportunity to communicate with their physician without parents being present.

In Chapter 3 we describe the many methodological issues that we encountered in trying to obtain quantitative data from DHH participants, including sign language users. The lack of suitable instruments for sign language users poses enormous problems for scientific research. Quality of life research, health inventories and psychological testing is usually done through written questionnaires. From research in ethnic minority groups it is known that standardized questionnaires can be used for people with a linguistic and cultural identity different from the original target group only after a meticulous process of translation and cultural adaptation. This is hardly ever done for Deaf sign language users, neither clinically nor in research settings. As far as we know, only one adapted and translated Health Related Quality of Life (HRQOL) questionnaire for Deaf sign language users exists, and this is in Austria, and we found no guidelines for translating and adapting questionnaires into sign language.

We attempted to overcome these difficulties by developing a standardized guideline for translating internationally used, written questionnaires into a sign language. The theoretical background, development and use of this guideline are described. This guideline is based on current guidelines for translating and adapting HRQOL questionnaires for spoken languages and adaptations were made based on experiments and expertise. We advise the use of carefully selected internationally validated written questionnaires in this population. If this is not done properly bias will arise, possibly resulting in many misdiagnoses. With this guideline we hope to raise awareness for possible bias in testing sign language users and to set a standard for practitioners and researchers in the medical profession, who wish to use standardized tests for DHH sign language users.

In Chapter 4 we studied the nature (sections 4.1 & 4.3) and impact (section 4.2) of possible barriers in accessing healthcare.

We used the guideline described in Chapter 2 to translate four standardized questionnaires into Sign Language of the Netherlands (NGT). The first three are internationally standardized questionnaires that have been translated and validated successfully in over a dozen languages. They do not require a high level of language development and have been widely field-tested. The fourth is especially developed for use by DHH participants. The questionnaires are:

- World Health Organization Quality of Life-BREF (WHOQoL-BREF): a short quality of life questionnaire that met our methodological demands and explicitly evaluates participants’ physical health.

- The General Health Questionnaire (GHQ): a screening instrument for identifying minor psychiatric disorders. It can be used in the general population or with clients in non-psychiatric clinical or primary care settings. We used the GHQ-12, the shortest version, especially designed for research studies.

- The KIDSCREEN: a generic quality of life instrument that has been designed and validated for children and adolescents between the ages of 8 and 18 years. KIDSCREEN can be used as a screening, monitoring and evaluation tool in health surveys. It covers 10 health related quality of life dimensions, while many QoL questionnaires for children cover only psychological and schooling domains.

- Deaf Acculturation Scale (DAS): This is a 58-item scale which measures deaf and hard of hearing individuals’ degree of acculturation to both deaf and hearing cultures. It consists of two overall acculturation scales: a deaf acculturation scale (DASd) and a hearing acculturation scale (DASh). Both measure acculturation across five domains. The DAS is the only validated scale that provides information about the cultural status of DHH persons. Having a different cultural identity from the majority society may have a negative effect on interaction. The DAS can be used to evaluate such effects among DHH people.

We also further translated a non-standardized epidemiological questionnaire, a medical questionnaire and a General Practitioner (GP) communication list.

Section 4.1 describes the results of our pilot study where we explored the communication between 32 severely DHH patients and their general practitioners (GP). Both the patients and their GPs filled out a questionnaire regarding communication during the consultations. We were interested to discover whether we would be able to detect communication barriers. The questionnaires were based on similar studies in hearing ethnic minority groups and were offered in written Dutch only.

The information which was compiled using the questionnaires indicated that communication problems are experienced in more than one third (39%) of the contacts between a deaf patient and their GP. Comparable studies between GPs and patients from ethnic minority groups in the Netherlands, reported that communication problems were experienced during 33% of the contacts, compared to 13% of the contacts when patients have a shared cultural and linguistic background with their GP. Arriving at a diagnosis and recommending a suitable therapy are the main goals of a consultation with a GP. We found that GPs are more positive about their ability to communicate this information than their patients. Over 90% of the GPs think that they are often or always able to explain the diagnosis and treatment clearly to their patients, while only slightly more than half of the patients stated that their GPs were often or always able to explain the diagnosis and treatment clearly.

We found that sign language or speech-to-text interpreters are hardly ever used during GP consultations. However, another factor that may contribute to the communication problems is that generally, GPs are not aware of the existence of a Deaf culture (83%) and, as a consequence of this, are also unaware of possible cultural differences.

Section 4.2 describes the quality of life of deaf and hard of hearing adults in the Netherlands. The physical and mental health of 274 DHH participants was measured using the World Health Organization Quality of Life- Bref scale (WHOQoL-BREF). Participants filled out an epidemiological questionnaire and questions about the language mode they generally use. The results were compared with those of a population-based control group. We found that different groups of DHH people experienced significantly more physical difficulties than the control group. This difference was highly significant in the group of people who were DHH from a young age. This outcome agrees with other studies.

Scores for psychological health were higher (better) in the deaf groups than in the hard of hearing groups: In contrast to other studies, deaf participants in the Netherlands did not report more psychological problems than the control group. Possible reasons for the differences in this perceived quality of life in physical and psychological domains are discussed, including the possible impact of barriers in healthcare access.

Very few incidence/ prevalence studies on public health and healthcare provision include DHH people as a specific group. We concluded that the health issues of DHH patients deserve further study to enable avoidance of medical, ethical and legal problems. More awareness and knowledge concerning the specific health problems of DHH people is necessary to enable appropriate and adequate healthcare provisions. DHH people and healthcare workers should be aware of the existence of co-morbidities and barriers to the access of healthcare, be educated on how to recognize and deal with these and when to consult an expert, specialized service or request communication assistance (e.g. a speech-to-text interpreter or sign language interpreter). Recognizing DHH people as a patient group requiring special attention is the first step towards improving their health.

Section 4.3 focuses on the Deaf cultural barriers that DHH people meet when they need to access the healthcare system. The quality of life of deaf and hard of hearing adults in relation to their degree of hearing loss, language skills, their relationship to the Deaf community and cultural feature was studied. Fourteen informants were interviewed about their healthcare experiences, a structured literature review was performed and the results of the DAS questionnaire in relation to the Health Related Quality of Life questionnaire are presented and discussed.

We identified six cultural differences between DHH and non-DHH people that obviously influence healthcare provision. These six are:

1) Information processing: Deaf community members are more likely to get information from each other and have less access to formal information sources.

2) Manners: Manners may differ between Hearing culture and Deaf culture; for example, ways to attract a person’s attention, the processes of greeting and ending conversations.

3) Lack of Trust: Severely DHH children lack access to (ambient) information in hearing surroundings such as a health facility. The experience that things happen to them without being informed about what is going to happen and why, makes them more sensitive to feelings of exclusion as adults. On the other hand, many DHH people also continue to accept this lack of information as a fact of life; In our structured interviews it was reported that DHH people are less assertive when visiting their physician, and this is also reported in the literature. For instance, Deaf people may agree to diagnostic tests and treatments without understanding what the tests comprise, why they are done or what the (side) effect of the treatment is, more readily than their hearing peers

4) Small community/ need for confidentiality: As the Deaf form a closely-knit group, Deaf people may be even more reluctant than hearing people to discuss sensitive topics such as psychological problems or HIV transmission. It may even prevent them from using specialized medical and social services. It is important for non-Deaf healthcare workers to realize that topics that might be considered sensitive among Deaf people, might be different from the topics that are considered sensitive among non-Deaf people.
5) Respect for Intelligence: Healthcare workers need to make sure they that they do not underestimate their DHH patients and offer sufficient information at the appropriate intellectual level.

6) Dissemination of Information: DHH research results need to be presented in a way which is comprehensible for DHH people. Unfortunately this need is often not addressed.
In this section we also focused on the relation between the primary mode of communication and health related quality of life. There are many debates in the literature and in (clinical) practice about who may benefit from the use of sign language, and to what extent it needs to be used to be beneficial. We found a significantly positive relationship between physical and psychological health, and the use of sign language and/or supporting signs. It appeared that the beneficial effect of using as many modes of communication as possible, is stronger than the possible negative effects of learning a language only partially. We did not find that a minimal ability to use sign language or supporting signs was necessary for these positive effects, the effect was present among all DHH groups. The relationship was continuous: the more extensive use of sign (language) a person has the higher the score on the QoL scales.

In Chapter 5 we studied specialized healthcare facilities for DHH people.
Specialized psychological and psychiatric healthcare for deaf and hard of hearing clients has become available during the last fifty years. Over the last twenty years specialized general health facilities and ICT facilities supporting communication between care givers and sign language users also gradually started to emerge.

In section 5.1. we described the services that are used worldwide to facilitate this patient group. These services can be organized into 5 types of services.

1) ICT services and (remote) interpreting. Certified sign language interpreters are provided in 31 countries. It is unknown how many of these countries also provide speech-to-text interpreting. Eight of these countries are currently also providing remote interpreting services during medical consultations.

2) Health promotion activities. As part of our literature search we found 33 articles on healthcare knowledge and promotion projects. The great majority of these articles concerned HIV/AIDS prevention. From interviews we know that the number of educational projects that are started is much higher than reported in the literature. Numerous small, local educational projects are probably initiated. Some countries are now developing websites or other multi-media carriers providing information on mental health issues for DHH people. In the USA some local projects have been set up that focus on providing medical patient information in sign language, but to our knowledge no national projects have been undertaken to make general medical information easily accessible to the DHH population.

3) Specialized primary healthcare, GP services and health clinics. The UK and Norway report having specialized primary healthcare facilities such as general practitioners with some SL skills, and knowledge of the special health needs of DHH people. No research papers describing these facilities and their effectiveness were found.

4) Specialized secondary healthcare, outpatient clinics

To our knowledge Austria, Switzerland, France and Japan are the only countries that provide special outpatient clinics for DHH people. These facilities also usually provide support for the medical staff involved when DHH people are hospitalized in their hospitals (inpatient services). Experts and patient groups report a higher perceived quality of healthcare and quality of health education within these specialized clinics. There are no scientific studies to support or reject these findings.

5) Mental health facilities. At least 17 countries provide specialized inpatient and/ or outpatient clinics for DHH people. Though most of these described services are likely to be cost-effective, there are no reliable scientific data available to support this assumption.

In section 5.2 we evaluated a specialized outpatient clinic for DHH people in the Netherlands.

We set up a quantitative research protocol to evaluate the functioning and effect of this clinic. The initiative failed and was terminated after two years, leaving us with insufficient data to perform an original quantitative study. A new qualitative research protocol was written and implemented, using structured and non-structured questionnaires and structured interviews to analyse the start-up, functioning and closedown. Based on the lessons learned from this project we made recommendations for the set-up of such a facility in the future. The main lessons learned were that diverse DHH groups should be involved from the beginning, that the type of healthcare provision should match the needs of the DHH groups, that the facility should be initiated and run by people with relevant and sufficient expertise, and that sufficient time should be invested in the start-up and in gaining the trust of the groups of DHH patients.

In conclusion we found that DHH people face significant barriers in accessing healthcare. This is similar to the barriers faced by patients from other (ethnic) minority groups. The barriers in providing healthcare for severely DHH patients can be classed as follows:  a) Communication barriers, b) Barriers due to limited health knowledge and c) Deaf cultural barriers which influence healthcare provision to DHH people.

The lower quality of healthcare might be reflected in the fact that DHH people have a lower perceived quality of life in physical and psychological domains. Linguistic and Deaf cultural barriers to access to treatment are not recognized by healthcare workers. Several countries provide specialized facilities to improve healthcare access for this patient group. Though most of these services are likely to be cost-effective, no scientific data are available to support this assumption.