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Intellectual impairment: a forgotten speciality
ARTICLE IN PRESS
International Journal of Nursing Studies 43 (2006) 525–526 www.elsevier.com/locate/ijnurstu
Guest editorial
Intellectual impairment: a forgotten speciality Keywords: Intellectual Impairment; Diagnostic issues; Expertise; Autism; Education
The last three decades have seen an international move towards a social model of care for people with intellectual impairments, particularly in relation to those with learning disabilities. In the United Kingdom, policy now dictates that specialist services for people with intellectual impairment should be kept to a minimum (DH, 2001) with generic health services being the preferred option. This is in line with many other developed countries throughout the world where a social model of care prevails and specialist clinical services have been slowly disbanded. The gradual closure of the long-stay institutions and the drive towards ‘‘normalisation’’ has resulted in a loss of nursing and medical expertise in caring for this client group in specialist institutions and created new challenges for both general (Moore et al., 2003) and specialist nurses in the community (Slevin and Sines, 2005). In the past, hospital psychiatrists and nurses in the institutions who specialised in intellectual impairment also catered for the physical health needs of those who resided there. These individuals developed skills in the management of this particular group and the conditions that are common to them such as epilepsy, autism, depression and behavioural problems. In more recent times, general practitioners and clinical assistants worked alongside the psychiatrists, and they in turn became specialists in the area. With the closure of institutions the focus they provided has now disappeared. But these closures and reduction in specialist services that accompanied them does not make the specialism of learning disabilities irrelevant to mainstream practice and too esoteric to merit mention in a general journal such as the International Journal of Nursing Studies. Far from it, knowledge of intellectual impairments is even more crucial. In this issue of the IJNS, a paper by Mawle and Griffiths (2006, p. 623) reviews the accuracy of screening tools for autism in pre-school children. It appears that autism is on the increase, especially in children who have intellectual impairment. At the same
time there has been a rapid decline in the diagnosis of other developmental disorders, thus suggesting that there may have been a change in diagnostic practices (Jick and Kaye, 2003). This review is timely, given that in some countries, for example the United Kingdom, routine screening for this condition is not recommended or supported within state funded health services, while in other countries, for example the USA, it is strongly advocated by influential bodies (Filipek et al., 2000). Accurate early diagnosis and identification of people with an intellectual impairment is fundamental if the process of ‘‘normalisation’’ is to continue and involve the healthcare needs of people with intellectual impairment. Investment must be made in the education of all health professionals in issues relating to the care of these clients. If a move does not occur in this direction in the immediate future the result will be a forgotten group of people who receive sub-standard services and do not have the voice to fight for adequate, let alone expert healthcare. However, investment needs to be made in beneficial services and it would seem from the findings of Mawle and Griffiths’ review that the tools that are currently suitable for use in general practice are not sufficiently well researched to be recommended for routine use despite the recommendations of some USbased organisations. Thus, enthusiasm here must be directed to more research and not the implementation of practices for which evidence is lacking. More generally, mental health problems are more prevalent in people with intellectual impairment than in the general population with a large proportion remaining undiagnosed (Deb et al., 2001; Doody et al., 1998). Identification of mental health issues for these individuals is problematic due to diagnostic overshadowing, behavioural issues and high rates of acquiescence during mental state examination, which is a very necessary component of the formulation process. Physical conditions including endocrine, cardiac and respiratory disorders, as well as gastrointestinal problems and
0020-7489/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2006.03.007
ARTICLE IN PRESS 526
Guest editorial / International Journal of Nursing Studies 43 (2006) 525–526
obesity occur more frequently in people with intellectual impairment than in the general population. These in turn can impact on their mental health as might the process of living in the wider community and the isolation which may result from such an existence (Carnaby, 1998). The difficulties in access to healthcare is further compounded by a lack of recognition of ill health in clients by untrained social care workers as well as the absence of specific communication skills to meet the challenges posed by some of this client group in many generic healthcare staff. Terminology in this field has also added to the complexity of the problem. In the USA the term mental retardation remains popular. In Australia intellectual disability is prominent. In the United Kingdom, an attempt to achieve political ‘‘correctness’’ led to widespread use of a term (learning disabilities) which was little understood by the general public and had connections with the learning difficulties (dyslexia, dyspraxia and the hyperkinetic disorders) which added to the confusion. Even within a single country such as the United Kingdom, there are disagreements in language and interpretation, which are reflected in divergent views of the nature of services (Gilbert et al., 2003) and disagreements on terminology between services and academic institutions, many of which have switched to using the term intellectual disability or impairment. Such terminology is helpful in that there are many people with borderline intelligence who are not known officially to statutory services but do need some support especially when accessing healthcare. Other groups including those with long term and enduring mental health problems, dementia and acquired brain injuries may also come under the umbrella term. Again this emphasises the importance of intellectual impairment as a mainstream topic. There is a very real danger with the demise of the specialist services for these individuals, coupled with a lack of commitment from governments, that people with intellectual impairment will become marginalised in the ‘‘normal’’ community and deprived of its benefits just as they were when separated from it. The shift in care provision has implications for generic health staff in acute, mental health and primary care services especially in relation to their education, which has been shown to be inadequate (Mencap, 2004; Chaplin, 2004; Xenitidies et al., 2004), at a time when awareness of the topic is more important that ever for generalists. Research funding, education and commitment of healthcare professionals are the ways forward. References Carnaby, S., 1998. Reflections on integration for people with intellectual disability: does interdependence have a role? Journal of Intellectual Disability 23 (3), 219–228.
Chaplin, R., 2004. General psychiatric services for adults with intellectual disability and mental illness. Journal of Intellectual Disability Research 48 (Part 1), 1–10. Deb, S., Thomas, M., Bright, C., 2001. Mental disorder in adults with intellectual disability: prevalence of functional psychiatric illness among a community based population between 16 and 64 years. Journal of Intellectual Disability Research 45, 495–505. Department of Health, 2001. Valuing People: A New Strategy for Learning Disability for the 21st Century. DH, London. Doody, G.A., Johnstone, E.C., Sanderson, T.L., Owens, D.G., Muir, W.J., 1998. ‘‘Propfschizophrine’’ revisited: schizophrenia in people with mild learning disability. British Journal of Psychiatry 173, 145–153. Filipek, P.A., Accardo, P.J., Ashwal, S., Baranek, G.T., Cook Jr., E.H., Dawson, G., Gordon, B., Gravel, J.S., Johnson, C.P., Kallen, R.J., Levy, S.E., Minshew, N.J., Ozonoff, S., Prizant, B.M., Rapin, I., Rogers, S.J., Stone, W.L., Teplin, S.W., Tuchman, R.F., Volkmar, F.R., 2000. Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology 55, 468–479. Gilbert, T., Cochrane, A., Greenwell, S., 2003. Professional discourse and service cultures: an organisational typology developed from health and welfare services for people with learning disabilities. International Journal of Nursing Studies 40 (7), 781–793. Jick, H., Kaye, J.A., 2003. Epidemiology and possible causes of autism. Pharmacotherapy 23, 1524–1530. Mawle, E., Griffiths, P., 2006. Screening for autism in preschool children in primary care: Systematic review of English language tools. International Journal of Nursing Studies 43 (5), 623–636. Mencap, 2004. ‘‘Treat me right!’’ Better Healthcare for People with a Learning Disability. London. Moore, G., McConkey, R., Duffy, M., 2003. The role of the school nurse in special schools for pupils with severe learning difficulties. International Journal of Nursing Studies 40 (7), 771. Slevin, E., Sines, D., 2005. The role of community nurses for people with learning disabilities: working with people who challenge. International Journal of Nursing Studies 42 (4), 415. Xenitidies, K., Gratsa, A., Bouras, N., Hammond, R., Ditchfield, H., Holt, G., Martin, J., Brookes, D., 2004. Psychiatric inpatient care for adults with intellectual disabilities: generic or specialist units? Journal of Intellectual Disability Research 48 (Part 1), 11–17.
Louise L. Clark Florence Nightingale School of Nursing and Midwifery, King’s College London, Waterloo Rd, London, UK E-mail address: [email protected]
International Journal of Nursing Studies 43 (2006) 525–526 www.elsevier.com/locate/ijnurstu
Guest editorial
Intellectual impairment: a forgotten speciality Keywords: Intellectual Impairment; Diagnostic issues; Expertise; Autism; Education
The last three decades have seen an international move towards a social model of care for people with intellectual impairments, particularly in relation to those with learning disabilities. In the United Kingdom, policy now dictates that specialist services for people with intellectual impairment should be kept to a minimum (DH, 2001) with generic health services being the preferred option. This is in line with many other developed countries throughout the world where a social model of care prevails and specialist clinical services have been slowly disbanded. The gradual closure of the long-stay institutions and the drive towards ‘‘normalisation’’ has resulted in a loss of nursing and medical expertise in caring for this client group in specialist institutions and created new challenges for both general (Moore et al., 2003) and specialist nurses in the community (Slevin and Sines, 2005). In the past, hospital psychiatrists and nurses in the institutions who specialised in intellectual impairment also catered for the physical health needs of those who resided there. These individuals developed skills in the management of this particular group and the conditions that are common to them such as epilepsy, autism, depression and behavioural problems. In more recent times, general practitioners and clinical assistants worked alongside the psychiatrists, and they in turn became specialists in the area. With the closure of institutions the focus they provided has now disappeared. But these closures and reduction in specialist services that accompanied them does not make the specialism of learning disabilities irrelevant to mainstream practice and too esoteric to merit mention in a general journal such as the International Journal of Nursing Studies. Far from it, knowledge of intellectual impairments is even more crucial. In this issue of the IJNS, a paper by Mawle and Griffiths (2006, p. 623) reviews the accuracy of screening tools for autism in pre-school children. It appears that autism is on the increase, especially in children who have intellectual impairment. At the same
time there has been a rapid decline in the diagnosis of other developmental disorders, thus suggesting that there may have been a change in diagnostic practices (Jick and Kaye, 2003). This review is timely, given that in some countries, for example the United Kingdom, routine screening for this condition is not recommended or supported within state funded health services, while in other countries, for example the USA, it is strongly advocated by influential bodies (Filipek et al., 2000). Accurate early diagnosis and identification of people with an intellectual impairment is fundamental if the process of ‘‘normalisation’’ is to continue and involve the healthcare needs of people with intellectual impairment. Investment must be made in the education of all health professionals in issues relating to the care of these clients. If a move does not occur in this direction in the immediate future the result will be a forgotten group of people who receive sub-standard services and do not have the voice to fight for adequate, let alone expert healthcare. However, investment needs to be made in beneficial services and it would seem from the findings of Mawle and Griffiths’ review that the tools that are currently suitable for use in general practice are not sufficiently well researched to be recommended for routine use despite the recommendations of some USbased organisations. Thus, enthusiasm here must be directed to more research and not the implementation of practices for which evidence is lacking. More generally, mental health problems are more prevalent in people with intellectual impairment than in the general population with a large proportion remaining undiagnosed (Deb et al., 2001; Doody et al., 1998). Identification of mental health issues for these individuals is problematic due to diagnostic overshadowing, behavioural issues and high rates of acquiescence during mental state examination, which is a very necessary component of the formulation process. Physical conditions including endocrine, cardiac and respiratory disorders, as well as gastrointestinal problems and
0020-7489/$ - see front matter r 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2006.03.007
ARTICLE IN PRESS 526
Guest editorial / International Journal of Nursing Studies 43 (2006) 525–526
obesity occur more frequently in people with intellectual impairment than in the general population. These in turn can impact on their mental health as might the process of living in the wider community and the isolation which may result from such an existence (Carnaby, 1998). The difficulties in access to healthcare is further compounded by a lack of recognition of ill health in clients by untrained social care workers as well as the absence of specific communication skills to meet the challenges posed by some of this client group in many generic healthcare staff. Terminology in this field has also added to the complexity of the problem. In the USA the term mental retardation remains popular. In Australia intellectual disability is prominent. In the United Kingdom, an attempt to achieve political ‘‘correctness’’ led to widespread use of a term (learning disabilities) which was little understood by the general public and had connections with the learning difficulties (dyslexia, dyspraxia and the hyperkinetic disorders) which added to the confusion. Even within a single country such as the United Kingdom, there are disagreements in language and interpretation, which are reflected in divergent views of the nature of services (Gilbert et al., 2003) and disagreements on terminology between services and academic institutions, many of which have switched to using the term intellectual disability or impairment. Such terminology is helpful in that there are many people with borderline intelligence who are not known officially to statutory services but do need some support especially when accessing healthcare. Other groups including those with long term and enduring mental health problems, dementia and acquired brain injuries may also come under the umbrella term. Again this emphasises the importance of intellectual impairment as a mainstream topic. There is a very real danger with the demise of the specialist services for these individuals, coupled with a lack of commitment from governments, that people with intellectual impairment will become marginalised in the ‘‘normal’’ community and deprived of its benefits just as they were when separated from it. The shift in care provision has implications for generic health staff in acute, mental health and primary care services especially in relation to their education, which has been shown to be inadequate (Mencap, 2004; Chaplin, 2004; Xenitidies et al., 2004), at a time when awareness of the topic is more important that ever for generalists. Research funding, education and commitment of healthcare professionals are the ways forward. References Carnaby, S., 1998. Reflections on integration for people with intellectual disability: does interdependence have a role? Journal of Intellectual Disability 23 (3), 219–228.
Chaplin, R., 2004. General psychiatric services for adults with intellectual disability and mental illness. Journal of Intellectual Disability Research 48 (Part 1), 1–10. Deb, S., Thomas, M., Bright, C., 2001. Mental disorder in adults with intellectual disability: prevalence of functional psychiatric illness among a community based population between 16 and 64 years. Journal of Intellectual Disability Research 45, 495–505. Department of Health, 2001. Valuing People: A New Strategy for Learning Disability for the 21st Century. DH, London. Doody, G.A., Johnstone, E.C., Sanderson, T.L., Owens, D.G., Muir, W.J., 1998. ‘‘Propfschizophrine’’ revisited: schizophrenia in people with mild learning disability. British Journal of Psychiatry 173, 145–153. Filipek, P.A., Accardo, P.J., Ashwal, S., Baranek, G.T., Cook Jr., E.H., Dawson, G., Gordon, B., Gravel, J.S., Johnson, C.P., Kallen, R.J., Levy, S.E., Minshew, N.J., Ozonoff, S., Prizant, B.M., Rapin, I., Rogers, S.J., Stone, W.L., Teplin, S.W., Tuchman, R.F., Volkmar, F.R., 2000. Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology 55, 468–479. Gilbert, T., Cochrane, A., Greenwell, S., 2003. Professional discourse and service cultures: an organisational typology developed from health and welfare services for people with learning disabilities. International Journal of Nursing Studies 40 (7), 781–793. Jick, H., Kaye, J.A., 2003. Epidemiology and possible causes of autism. Pharmacotherapy 23, 1524–1530. Mawle, E., Griffiths, P., 2006. Screening for autism in preschool children in primary care: Systematic review of English language tools. International Journal of Nursing Studies 43 (5), 623–636. Mencap, 2004. ‘‘Treat me right!’’ Better Healthcare for People with a Learning Disability. London. Moore, G., McConkey, R., Duffy, M., 2003. The role of the school nurse in special schools for pupils with severe learning difficulties. International Journal of Nursing Studies 40 (7), 771. Slevin, E., Sines, D., 2005. The role of community nurses for people with learning disabilities: working with people who challenge. International Journal of Nursing Studies 42 (4), 415. Xenitidies, K., Gratsa, A., Bouras, N., Hammond, R., Ditchfield, H., Holt, G., Martin, J., Brookes, D., 2004. Psychiatric inpatient care for adults with intellectual disabilities: generic or specialist units? Journal of Intellectual Disability Research 48 (Part 1), 11–17.
Louise L. Clark Florence Nightingale School of Nursing and Midwifery, King’s College London, Waterloo Rd, London, UK E-mail address: [email protected]