The mental health and wellbeing of people living with Deafblindness: future directions for disability and mental health services
A PhD project: Alana Roy
How might we develop a better understanding of people who are Deafblind?
The Deafblind population face complex and multifaceted social, political, and economic barriers as they attempted to navigate the world with limited, or no sight and hearing. Deafblindness can limit choices and opportunities in accommodation, education and vocational activities. It can confound personal care, orientation, mobility and safety, and negatively impact communication and social relationships. As a consequence of these multiple impairments and limitations, Deafblindness can have a major detrimental effect on a person’s social inclusion and access to appropriate services and supports, their quality of life and wellbeing and, consequently their mental health (Heliport, Andre, Pierre, & Chamberlain, 2006; Vernon, 2010).
Given the preponderance of Deafblindness in the ageing population in particular, and the rise in the ageing populations around the world, there has been a growing interest in the assessment, treatment, and provision of support for Deafblind people (Brenna, Horowitz & Ya-ping 2005; Heine & Browning, 2002; Schneider et al. 2010). However, there is a shortage of skilled professionals who can work with, and communicate effectively with this population. Academics, governments, allied health professionals and disability service providers all need to be better equipped to respond to the needs of the growing population of Deafblind people (Ronnber & Borg, 2001). To assist with the development of appropriate policy and effective practice, a model is required which encapsulates the needs, priorities and aspirations of Deafblind people, and which can inform policy makers, practitioners, and those responsible for the development and delivery of services.
Since the 1970’s, the Bio-psycho-social model of disability has gained popularity in the literature and social services. This model has since been adopted by the World Health Organisation (WHO) in their International Classification of Functioning Disability and Health (ICF; WHO, 2001). This model acknowledges the medical components to disability but places an emphasis on the socio-economical, physical, and political barriers that restrict disabled people (Engel, 1977; 1980). For the purpose of this review, when defining and developing an understanding of what constitutes Deafblindness, the bio-psycho-social model will be extended to the bio-psycho-social-cultural model. This model offers a holistic theoretical approach; incorporating knowledge from biology, psychology, and the social sciences.
In addition, Bronfenbrenner’s Ecological Systems Theory (1979) will be used to analyse the state of the research in the field of Deafblindness (i.e., within an ecological context). It will be used to explore how organizations (microsystems), specific relationships (mesosystems), social settings (exosystem), cultural context (macro system), and environmental/socio-historical events (chrono systems) shape and influence the mental health and wellbeing of people living with Deafblindness (Brennan, 2005; 2007).
What do we know, and what do we need to know, about Mental Health for People who are Deafblind?
The field of Deafblind mental health is arguably in its infancy (Mathos, Lokar & Edward, 2011). Little is known about the psychosocial impacts of being Deafblind, and the associated mental health issues. Deafblind mental health and wellbeing is often overlooked or misdiagnosed, possibly due to the complexity of people’s communication support needs. Further confounding the planning and provision of appropriate services, disability and mental health organizations generally do not record specific or comprehensive data on persons who are Deafblind, their mental health and wellbeing (Heine, 2014).
To inform developments in the field of Deafblind research, policy and practice, there is an established body of knowledge demonstrating that mental health is a central component of what Cummins (2005) refers to as quality of life; defined as “a state of well-being in which every individual realizes his or her own potential, can cope with normal stresses of life, can work productively and fruitfully and is able to make a contribution to her or his community (World Health Organisation, 2013b, para.1). Some authors have noted that people living with Deafblindness experience reduced functional capacity as compared to their peers with and without disabilities, limited social inclusion, poorer quality of life, and higher rates of mental illness (Heine & Browning, 2004; Hicks, 1978; Horowitz & Reinhardt, 1998; Luey, 1994).
However, the majority of the mental health related data has focused on deafness or blindness as single sensory impairments (Hershberger, 1992 & Wahl et al 2013). The combined psychosocial impacts of Deafblindness have been largely overlooked (Vernon, 2007; Heine, 2014). To date, the Deafblind population has received a paucity of research interest of internationally, and little if any within the Australian context (Heine, 2014; Dammeyer, 2015).
Why the Need for a Deafblind Research Agenda, and What Might it Investigate?
The Deafblind community in Australia, and internationally, is characterized as unique culturally and linguistically diverse minority group. However, recognising the importance of being part of the wider society, they actively promote and pursue access, participation and inclusion in the wider community (Mathos, Lokar & Edward, 2011). Here though, with respect to addressing issues of social isolation and the associated mental health risks, it could be that being part of the Deafblind community itself decreases isolation and improves mental health and wellbeing (Mcletchie, 1997). Consistent with this proposition, there is some literature reporting on the benefits of Deaf culture on mental health and wellbeing( Kendal, Gutman & Rosenheck, 2008; Lane, 1989; 1999; Lane, Hoffmeister & Bahan, 1996; Peters, 2007).
However, there is no published literature reporting on the more integrated holistic bio-psycho-social-cultural experience of people living with Deafblindness; how do they live, cope, adapt and thrive? Furthermore, there are limited data outlining how organisations, policies, procedures and staff might promote the mental health and wellbeing of people living with Deafblindness. Consequently, there are no current clinical best practice guidelines regarding how to work with Deafblind people effectively in a mental health context.
The current review will therefore critically summarise and establish the state of the science in the field of Deafblindness, focusing specifically on the bio-psycho-social-cultural experiences of people who are Deafblind, and how these factors might interact with, and affect mental health and wellbeing. These findings will then inform a research agenda, to be implemented with the ultimate goal of improving the mental health and wellbeing of Deafblind people.
Overall, this review addresses the question, to what extent a contemporary bio-psycho-social-cultural model might be useful when seeking to assess, treat and support people who are Deafblind and who experience mental ill-health? Consequently, the questions driving the current review of the state of the science in this field are: what do we know about the clinical issues effecting and reflecting the mental health of Deafblind people; what do we know about the quality and effectiveness of organisations and services available to support Deafblind people; is there evidence of a distinct Deafblind culture and community, and if so how this might interact with and affect the mental health of Deafblind people?
This programme of research, based on issues identified through the systematic literature review, will:
1. Establish what constitutes the Deafblind Culture, in an Australian context, and how it is expressed;
2. Ascertain if, and if so how, Deafblind culture might affect mental health and wellbeing within this population; and subsequently the mental health priorities for this population; and
3. Devise and pilot strategies (e.g., policy, professional development and interventions) to address these issues.
Alana Roy (Mental Health Social Worker, Associate Member of the Australian Psychological Society and PhD Candidate, University of Melbourne, School of Social and Political Science). Alana’s Principal PhD Supervisor is Associate Professor Keith McVilly (University of Melbourne) and Associate PhD Supervisor is Professor Beth Crisp, Deakin University.
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