Marginal voices- A quest to improve mental health diagnosis among the Deaf community in the UK
Written by MPH Student Ms Reda Misghina
Each year in the UK, at least 1 in 4 people experience a mental health problem.[1] When faced with a mental health illness, we often hear the words ‘it helps to talk about it’. The tool of communication in Deaf individuals makes it so that ‘talking’ takes a different format in their ability to convey thought. Various misconceptions about Deafness and the obstacles faced to access mental health services must then be conceptualised differently.
Deafness as an identity
In the UK, around 10 million people are considered to be Deaf.[2] The heterogeneous forms of what it means to be Deaf renders it a complex subject. Forms of identification is an interesting factor. For example, there is a distinction between a deaf person (lower case ‘d’) which refers to those with severe hearing problems or who became hard of hearing later in life, compared to a Deaf person (capital ‘D), referring to people that were born deaf or became so soon after birth.
Research over the years has noted a cultural distinction in identity formation. The Deaf Identity Development Scale (DIDS) measure was developed to illustrate the psychological process by which Deaf people orientate themselves with the Deaf culture and community.[3] The various distinctions between multivariate methods of identification give a notion of the complexity of Deafness. The Deaf identity is therefore not a “static concept but an ongoing quest for belonging”.[4]
The British Sign Language (BSL) is a language in its own right, being the 4th most used language in the UK. This language uses a different grammar and syntax to spoken English. Different signs come with different facial expressions – this may give an agitated impression to a hearing person but are very important expression of emotions. For instance, a common misconception is the assumption that Deaf people can read lips or have a fluent English understanding. Recognising the intrinsic nature of Deaf identity is thus a step towards how Deaf people are understood in public health. The delivery of vital mental health services should then engage with the cultural and linguistic factors that define the Deaf population.
Deafness and mental health
The size of the problem of Deaf people with mental health issue is currently unknown. There are various estimates that will paint a picture of the extent of its severity but reliable evidence is either preliminary or out of date. It has been widely acknowledged that Deaf people are twice as likely to have mental health issues as hearing people and 40% of Deaf people will experience a mental health issue at some point in their lives.[5]
An up-to-date epidemiological study with a clear focus on the mental health of Deaf people is very much needed to identify the depth of the issue. Furthermore, lack of recognition of linguistic and cultural distinctiveness of Deaf people in primary health care give way to misdiagnosis of mental illnesses. Research has established that standardised mental health assessment designed for hearing people is often invalid for Deaf patients.[6] One of the few studies that has analysed psychotic disorders in the US has shown that there are significant differences in treatment and assessment of Deaf people compared to the hearing population.[7] Assessment of cognitive functioning of a Deaf patient needs to incorporate the complexity of what the ‘Deafness’ really means. The degree of emotive behaviours expressed by Deaf people needs to be well understood in order to provide quality mental health services.
Going beyond the language fix
Translating the conceptual theory of the Deaf identity and Deaf mental health into practice as a public health matter is a challenge yet to be fully met. Community-based mental health for the Deaf community has been led by charities acting on behalf of primary and secondary mental health services. Currently, SignHealth is the only Deaf health charity that offers a psychological therapy service for Deaf people with ‘BSL Healthy Minds’. This essential service has helped connect patients to a Deaf therapist, or a hearing but fluent BSL user done in the effort of addressing the gap found in primary mental health.
Additionally, Deaf people in large parts of the country are victim of ‘postcode lottery’ in accessing specialised community services. Due to low density of Deaf people residing and seeking the service in each Clinical Commissioning Groups (CCGs)-managed area in England, the Healthy Minds programme has referral numbers that are too high to be considered specialist and too low for CCGs to consider commissioning.[8] This move reinforces health inequality by an already marginalised community in primary and secondary mental health care. Effective management of ensuring mental health in a culturally sensitive way should allow space for innovation at a local and national level.
Lessons could also be drawn from other countries. In Austria, for instance, Health Centres for the Deaf are an integrated part of primary and secondary care where they are supported by competent staff who are familiar with Deaf culture and are able to communicate in Sign language.[9]
Nonetheless, despite its growing recognition in public health, there is an inconsistency in our way of implementing appropriate services that are essential for Deaf people, especially BSL users. Innovations such as the Austrian example give guidance to how secondary care can combine mental health in outpatient clinics while the Healthy Minds initiative can be developed further to create an integrated, patient-focused and identity sensitive services and seek to go beyond the language fix. Therefore, identifying BSL as a language and Deafness as an identity is critical for mitigating the mental health challenges faced by Deaf people in England.
Conclusion
In order to close the gap between mental health issues and medical services it is paramount to conduct interventions at a local level and start to implement BSL friendly psychological services at a national level. Recognising the cultural distinctiveness of the Deaf community is a pre-requisite to how medical and public health professionals can assess their need for effective response.
This essay was awarded a prize by the Royal Society for Public Health.
References:
1. Mind. How common are mental health problems? [Internet]. Mind.org.uk. 2017. Available from: https://www.mind.org.uk/information-support/types-of-mental-health-problems/statistics-and-facts-about-mental-health/how-common-are-mental-health-problems/#one, [cited 3 November 2017]
2. Levine J. Primary care for deaf people with mental health problems. British Journal of Mental Health Nursing. 2014;3(3):105-109.
3. Glickman N, Carey J. Measuring deaf cultural identities: A preliminary investigation. Rehabilitation Psychology. 1993;38(4):275-283.
4. Hauser PC, O’Hearn A, McKee M, Steider A, Thew D. Deaf epistemology: deafhood and deafness. Am Ann Deaf 2010; 154: 486–96.
5. SignHealth. Executive briefing on mental health services for deaf and hard of hearing people [Internet]. Signhealth.org.uk. 2014 [cited 21 November 2017]. Available from: https://signhealth.org.uk/wp-content/uploads/2014/02/ExecutiveBriefing.pdf
6. Brauer BA, Braden JP, Pollard RQ, Hardy-Braz ST. Deaf and hard of hearing people. In: Sandoval J, Frisby C, Geisinger KF, Scheuneman J, Ramos Grenier J, eds. Test interpretation and diversity; achieving equity in assessment. Washington, DC:
American Psychological Association, 1998: 297–315.
7. 1. Diaz D, Landsberger S, Povlinski J, Sheward J, Sculley C. Psychiatric disorder prevalence among deaf and hard-of-hearing outpatients. Comprehensive Psychiatry. 2013;54(7):991-995.
8. Hulme C. Can a Deaf charity develop an effective relationship with over 200 CCGs?. British Journal of Healthcare Management. 2015;21(10):452-455.
9. Fellinger J, Holzinger D, Schoberberger R, Lenz G. Psychosocial characteristics of deaf people: evaluation of data from a special outpatient clinic for the deaf. Nervenarzt 2005; 76: 43–51 (in German).
Written by MPH Student Ms Reda Misghina
Each year in the UK, at least 1 in 4 people experience a mental health problem.[1] When faced with a mental health illness, we often hear the words ‘it helps to talk about it’. The tool of communication in Deaf individuals makes it so that ‘talking’ takes a different format in their ability to convey thought. Various misconceptions about Deafness and the obstacles faced to access mental health services must then be conceptualised differently.
Deafness as an identity
In the UK, around 10 million people are considered to be Deaf.[2] The heterogeneous forms of what it means to be Deaf renders it a complex subject. Forms of identification is an interesting factor. For example, there is a distinction between a deaf person (lower case ‘d’) which refers to those with severe hearing problems or who became hard of hearing later in life, compared to a Deaf person (capital ‘D), referring to people that were born deaf or became so soon after birth.
Research over the years has noted a cultural distinction in identity formation. The Deaf Identity Development Scale (DIDS) measure was developed to illustrate the psychological process by which Deaf people orientate themselves with the Deaf culture and community.[3] The various distinctions between multivariate methods of identification give a notion of the complexity of Deafness. The Deaf identity is therefore not a “static concept but an ongoing quest for belonging”.[4]
The British Sign Language (BSL) is a language in its own right, being the 4th most used language in the UK. This language uses a different grammar and syntax to spoken English. Different signs come with different facial expressions – this may give an agitated impression to a hearing person but are very important expression of emotions. For instance, a common misconception is the assumption that Deaf people can read lips or have a fluent English understanding. Recognising the intrinsic nature of Deaf identity is thus a step towards how Deaf people are understood in public health. The delivery of vital mental health services should then engage with the cultural and linguistic factors that define the Deaf population.
Deafness and mental health
The size of the problem of Deaf people with mental health issue is currently unknown. There are various estimates that will paint a picture of the extent of its severity but reliable evidence is either preliminary or out of date. It has been widely acknowledged that Deaf people are twice as likely to have mental health issues as hearing people and 40% of Deaf people will experience a mental health issue at some point in their lives.[5]
An up-to-date epidemiological study with a clear focus on the mental health of Deaf people is very much needed to identify the depth of the issue. Furthermore, lack of recognition of linguistic and cultural distinctiveness of Deaf people in primary health care give way to misdiagnosis of mental illnesses. Research has established that standardised mental health assessment designed for hearing people is often invalid for Deaf patients.[6] One of the few studies that has analysed psychotic disorders in the US has shown that there are significant differences in treatment and assessment of Deaf people compared to the hearing population.[7] Assessment of cognitive functioning of a Deaf patient needs to incorporate the complexity of what the ‘Deafness’ really means. The degree of emotive behaviours expressed by Deaf people needs to be well understood in order to provide quality mental health services.
Going beyond the language fix
Translating the conceptual theory of the Deaf identity and Deaf mental health into practice as a public health matter is a challenge yet to be fully met. Community-based mental health for the Deaf community has been led by charities acting on behalf of primary and secondary mental health services. Currently, SignHealth is the only Deaf health charity that offers a psychological therapy service for Deaf people with ‘BSL Healthy Minds’. This essential service has helped connect patients to a Deaf therapist, or a hearing but fluent BSL user done in the effort of addressing the gap found in primary mental health.
Additionally, Deaf people in large parts of the country are victim of ‘postcode lottery’ in accessing specialised community services. Due to low density of Deaf people residing and seeking the service in each Clinical Commissioning Groups (CCGs)-managed area in England, the Healthy Minds programme has referral numbers that are too high to be considered specialist and too low for CCGs to consider commissioning.[8] This move reinforces health inequality by an already marginalised community in primary and secondary mental health care. Effective management of ensuring mental health in a culturally sensitive way should allow space for innovation at a local and national level.
Lessons could also be drawn from other countries. In Austria, for instance, Health Centres for the Deaf are an integrated part of primary and secondary care where they are supported by competent staff who are familiar with Deaf culture and are able to communicate in Sign language.[9]
Nonetheless, despite its growing recognition in public health, there is an inconsistency in our way of implementing appropriate services that are essential for Deaf people, especially BSL users. Innovations such as the Austrian example give guidance to how secondary care can combine mental health in outpatient clinics while the Healthy Minds initiative can be developed further to create an integrated, patient-focused and identity sensitive services and seek to go beyond the language fix. Therefore, identifying BSL as a language and Deafness as an identity is critical for mitigating the mental health challenges faced by Deaf people in England.
Conclusion
In order to close the gap between mental health issues and medical services it is paramount to conduct interventions at a local level and start to implement BSL friendly psychological services at a national level. Recognising the cultural distinctiveness of the Deaf community is a pre-requisite to how medical and public health professionals can assess their need for effective response.
This essay was awarded a prize by the Royal Society for Public Health.
References:
1. Mind. How common are mental health problems? [Internet]. Mind.org.uk. 2017. Available from: https://www.mind.org.uk/information-support/types-of-mental-health-problems/statistics-and-facts-about-mental-health/how-common-are-mental-health-problems/#one, [cited 3 November 2017]
2. Levine J. Primary care for deaf people with mental health problems. British Journal of Mental Health Nursing. 2014;3(3):105-109.
3. Glickman N, Carey J. Measuring deaf cultural identities: A preliminary investigation. Rehabilitation Psychology. 1993;38(4):275-283.
4. Hauser PC, O’Hearn A, McKee M, Steider A, Thew D. Deaf epistemology: deafhood and deafness. Am Ann Deaf 2010; 154: 486–96.
5. SignHealth. Executive briefing on mental health services for deaf and hard of hearing people [Internet]. Signhealth.org.uk. 2014 [cited 21 November 2017]. Available from: https://signhealth.org.uk/wp-content/uploads/2014/02/ExecutiveBriefing.pdf
6. Brauer BA, Braden JP, Pollard RQ, Hardy-Braz ST. Deaf and hard of hearing people. In: Sandoval J, Frisby C, Geisinger KF, Scheuneman J, Ramos Grenier J, eds. Test interpretation and diversity; achieving equity in assessment. Washington, DC:
American Psychological Association, 1998: 297–315.
7. 1. Diaz D, Landsberger S, Povlinski J, Sheward J, Sculley C. Psychiatric disorder prevalence among deaf and hard-of-hearing outpatients. Comprehensive Psychiatry. 2013;54(7):991-995.
8. Hulme C. Can a Deaf charity develop an effective relationship with over 200 CCGs?. British Journal of Healthcare Management. 2015;21(10):452-455.
9. Fellinger J, Holzinger D, Schoberberger R, Lenz G. Psychosocial characteristics of deaf people: evaluation of data from a special outpatient clinic for the deaf. Nervenarzt 2005; 76: 43–51 (in German).
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