Copyright © eContent Management Pty Ltd. Contemporary Nurse (2014) 49: 47–49.
Editorial
Nurse education: Meeting the needs of people with intellectual disabilities? Ruth Northway*, Robert Jenkins* and Shirley McMillan*,+ *School of Care Sciences, Faculty of Life Sciences and Education, University of South Wales, Pontypridd, Wales, England; +Surrey Place Centre, Toronto, ON, Canada
A
rticle 25 of the United Nations Convention on the Rights of Persons with Disabilities (United Nations [UN], 2006) states that people with disabilities have the right to the highest attainable standard of health and the International Council of Nurses Code of Ethics (2012) stresses that respect for human rights is ‘inherent’ within nursing. Taken together these statements suggest that promotion of the health of people with intellectual disabilities should be a universal concern for all nurses. However, to date, discussion of their health needs and the role that nurses play in addressing such needs is limited within the international nursing literature. This paper aims to promote debate regarding this issue with particular reference to the role of education in effecting change.
The health needs of people with intellectual disabilities
In the context of this paper ‘intellectual disabilities’ refers to individuals who have impairments in both intellectual and social functioning and who have acquired these impairments before the age of 18 (Department of Health, 2001). It is difficult to determine the precise number of people who have intellectual disabilities but attempts have been made to develop a global picture (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011; Mercier, Saxena, Lecomte, Cumberera, & Harnois, 2008; World Health Organisation [WHO], 2007), and available data suggests that the highest prevalence rates are found in low and middle income countries, who have only limited resources to provide support (Maulik et al., 2011). In higher income countries prevalence rates are often based upon data of those using specialist services (administrative prevalence) and in England Emerson and Hatton (2004) estimated
that whilst the administrative prevalence of intellectual disabilities is 0.46% of the population the true prevalence is closer to 2%. Work undertaken over the past decade has revealed international evidence of the health disparities experienced by people with intellectual disabilities (for example Emerson, Baines, Allerton, & Welch, 2012; Krahn, Hammond, & Turner, 2006; Ouellette-Kuntz et al., 2005). Such disparities are evident in relation to the socio-economic conditions that determine health status, timely identification of health problems, access to health care services and the quality of service received. Whilst people with intellectual disabilities experience the same range of health problems as the wider population the pattern of illness they experience may be different. For example the prevalence of epilepsy is higher amongst people with intellectual disabilities (Emerson et al., 2012), the most common cause of death is respiratory disease compared to cardiovascular disease in the wider population (Glover & Ayub, 2010) and although overall rates of cancer are lower in people with intellectual disabilities rates of gastro-intestinal cancer are higher (Emerson et al., 2012). Some of these differences are avoidable and may be related to a failure to detect conditions at an early stage hence whilst overall the life expectancy of people with intellectual disabilities is increasing a recent study found that men with intellectual disabilities die an average of 13 years younger and women die 20 years younger than their non-disabled peers (Heslop et al., 2013). Internationally nurses support people with intellectual disabilities in relation to their healthcare including those who are not in receipt of specialist intellectual disability services (where they exist) and they therefore potentially have an important role to play in reducing the disparities
Volume 49, December 2014
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Ruth Northway, Robert Jenkins and Shirley McMillan
noted above. However, a recurring theme in the literature is that health professionals (including nurses) report not feeling adequately prepared to support people with intellectual disabilities (Bradbury-Jones, Rattray, Jones, & MacGillivray, 2013; Ouellette-Kuntz et al., 2005). Educational interventions have been found to increase knowledge and to promote more positive attitudes (Read & Rushton, 2013) and the need for investment in this area has thus been noted (Bradbury-Jones et al., 2013). Nonetheless reports of failures to provide appropriate care (with sometimes fatal consequences) continue to emerge leading to charges of ‘indifference’ on the part of health professionals including nurses (Mencap, 2007, 2012). Nurse education and people with intellectual disabilities
There is compelling evidence of avoidable health disparities experienced by people with intellectual disabilities and calls have been made for standardised and systematic inclusion of intellectual disabilities within the curricula for health professionals (Krahn et al., 2006). However, to date (as far as the authors can ascertain) there has been no international debate as to how nurses should be educationally prepared to support this group of people and currently different systems are evident including: • Specialist pre-qualifying educational courses in intellectual disability nursing (UK and Ireland) accompanied by limited inclusion in other fields of pre-qualifying specialism (such as adult nursing). • Generic pre-qualifying educational courses with an optional post qualifying specialist qualification (for example the Developmental Disabilities Nurses Association accreditation in the USA). • Generic pre-qualifying educational courses with no provision for post registration education focussing on the needs of people with intellectual disabilities (for example, Canada). Within generic curricula it is unclear as to what extent (if any) the needs of people with intellectual disabilities are explored and whether their inclusion is mandatory or optional. Furthermore 48
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Volume 49, December 2014
there seems to be an absence of comparative studies that examine the outcomes of these differing educational approaches in terms of their impact on the health of people with intellectual disabilities. Despite acknowledgement that nurses feel ill equipped to meet the needs of people with intellectual disabilities it appears to be an aspect of nursing care and education that has, to date, received only minimal attention. Conclusions International evidence demonstrates that the health needs of people with intellectual disabilities are not currently being adequately addressed and that the contribution that nurses could make to reducing disparities may be compromised by a lack of appropriate education. However, what constitutes appropriate and effective education in this context is currently unclear and there is a need to compare and evaluate both educational approaches and their impact on patient care. A failure to do so raises issues of social justice and challenges the extent to which respect for human rights is ‘inherent’ to nursing. Without action the charge of ‘indifference’ will remain. References
Bradbury-Jones, C., Rattray, J., Jones, M., & MacGillivray, S. (2013). Promoting the health, safety and welfare of adults with learning disabilities in acute care settings: A structured literature review. Journal of Clinical Nursing, 22, 1497–1509. Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. London, England: HMSO. Emerson, E., Baines, S., Allerton, L., & Welch, V. (2012). Health inequalities and people with learning disabilities in the UK. London, England: Department of Health. Emerson, E., & Hatton, C. (2004). Estimating the current need/demand for supports for people with learning disabilities in England. Lancaster, England: Lancaster University: Institute for Health Research. Glover, G., & Ayub, M. (2010). How people with learning disabilities die. London, England: Department of Health. Heslop, P., Blair, P., Fleming, P., Houghton, M., Marriott, A., & Russ, L. (2013). Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol, England: Norah Fry Research Centre.
© eContent Management Pty Ltd
Meeting the needs of people with intellectual disabilities? International Council of Nurses. (2012). The international council of nurses code of ethics for nurses. Geneva, Switzerland: Author. Krahn, G. L., Hammond, L., & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12, 70–82. Maulik, P. K., Mascarenhas, M. N., Mathers, C. D., Dua, T., & Saxena, S. (2011). Prevalence of intellectual disability: A meta-analysis of population-based studies. Research in Developmental Disabilities, 32, 419–436. Mencap. (2007). Death by indifference. London, England: Author. Mencap. (2012). Death by indifference: 74 deaths and counting. A progress report. London, England: Author. Mercier, C., Saxena, S., Lecomte, J., Cumberera, M. G., & Harnois, G. (2008). WHO Atlas on global
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resources for persons with intellectual disabilities 2007: Key findings relevant to low- and middleincome countries. Journal of Policy and Practice in Intellectual Disabilities, 5(2), 81–88. Ouellette-Kuntz, H., Minnes, P., Garcin, N., Martin, C., Lewis, M. E. S., & Holden, J. J. A. (2005). Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health, 96(2), 8–20. Read, S., & Rushton, A. (2013). Cultivating understanding of health issues for adults with intellectual disabilities. Nurse Education Today, 33(2013), 1020–1025. United Nations. (2006). The convention on the rights of persons with disabilities. New York, NY: Author. World Health Organisation. (2007). Atlas. Global resources for persons with intellectual disabilities. Geneva, Switzerland: Author.
ORDER FORM Advances in Contemporary Nurse Education (3rd edn) Editors: Louise D Hickman, Judy Mannix, Stephen Neville; ISBN 978-1-921980-45-9 A special issue of Journal of Contemporary Nurse (Volume 49, December 2014) Prices include airmail freight on all orders and GST (for Australian customers) Australia, New Zealand and Pacific: Institutions AU$126.50; Individuals AU$66.00. ROW: Institutions US$126.50; Individuals US$66.00. Students receive a 20% discount on the respective individual price against proof of student identity. Number of copies:
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© eContent Management Pty Ltd
Volume 49, December 2014
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49
Copyright of Contemporary Nurse: A Journal for the Australian Nursing Profession is the property of eContent Management Pty. Ltd. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Editorial
Nurse education: Meeting the needs of people with intellectual disabilities? Ruth Northway*, Robert Jenkins* and Shirley McMillan*,+ *School of Care Sciences, Faculty of Life Sciences and Education, University of South Wales, Pontypridd, Wales, England; +Surrey Place Centre, Toronto, ON, Canada
A
rticle 25 of the United Nations Convention on the Rights of Persons with Disabilities (United Nations [UN], 2006) states that people with disabilities have the right to the highest attainable standard of health and the International Council of Nurses Code of Ethics (2012) stresses that respect for human rights is ‘inherent’ within nursing. Taken together these statements suggest that promotion of the health of people with intellectual disabilities should be a universal concern for all nurses. However, to date, discussion of their health needs and the role that nurses play in addressing such needs is limited within the international nursing literature. This paper aims to promote debate regarding this issue with particular reference to the role of education in effecting change.
The health needs of people with intellectual disabilities
In the context of this paper ‘intellectual disabilities’ refers to individuals who have impairments in both intellectual and social functioning and who have acquired these impairments before the age of 18 (Department of Health, 2001). It is difficult to determine the precise number of people who have intellectual disabilities but attempts have been made to develop a global picture (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011; Mercier, Saxena, Lecomte, Cumberera, & Harnois, 2008; World Health Organisation [WHO], 2007), and available data suggests that the highest prevalence rates are found in low and middle income countries, who have only limited resources to provide support (Maulik et al., 2011). In higher income countries prevalence rates are often based upon data of those using specialist services (administrative prevalence) and in England Emerson and Hatton (2004) estimated
that whilst the administrative prevalence of intellectual disabilities is 0.46% of the population the true prevalence is closer to 2%. Work undertaken over the past decade has revealed international evidence of the health disparities experienced by people with intellectual disabilities (for example Emerson, Baines, Allerton, & Welch, 2012; Krahn, Hammond, & Turner, 2006; Ouellette-Kuntz et al., 2005). Such disparities are evident in relation to the socio-economic conditions that determine health status, timely identification of health problems, access to health care services and the quality of service received. Whilst people with intellectual disabilities experience the same range of health problems as the wider population the pattern of illness they experience may be different. For example the prevalence of epilepsy is higher amongst people with intellectual disabilities (Emerson et al., 2012), the most common cause of death is respiratory disease compared to cardiovascular disease in the wider population (Glover & Ayub, 2010) and although overall rates of cancer are lower in people with intellectual disabilities rates of gastro-intestinal cancer are higher (Emerson et al., 2012). Some of these differences are avoidable and may be related to a failure to detect conditions at an early stage hence whilst overall the life expectancy of people with intellectual disabilities is increasing a recent study found that men with intellectual disabilities die an average of 13 years younger and women die 20 years younger than their non-disabled peers (Heslop et al., 2013). Internationally nurses support people with intellectual disabilities in relation to their healthcare including those who are not in receipt of specialist intellectual disability services (where they exist) and they therefore potentially have an important role to play in reducing the disparities
Volume 49, December 2014
CN
47
CN
Ruth Northway, Robert Jenkins and Shirley McMillan
noted above. However, a recurring theme in the literature is that health professionals (including nurses) report not feeling adequately prepared to support people with intellectual disabilities (Bradbury-Jones, Rattray, Jones, & MacGillivray, 2013; Ouellette-Kuntz et al., 2005). Educational interventions have been found to increase knowledge and to promote more positive attitudes (Read & Rushton, 2013) and the need for investment in this area has thus been noted (Bradbury-Jones et al., 2013). Nonetheless reports of failures to provide appropriate care (with sometimes fatal consequences) continue to emerge leading to charges of ‘indifference’ on the part of health professionals including nurses (Mencap, 2007, 2012). Nurse education and people with intellectual disabilities
There is compelling evidence of avoidable health disparities experienced by people with intellectual disabilities and calls have been made for standardised and systematic inclusion of intellectual disabilities within the curricula for health professionals (Krahn et al., 2006). However, to date (as far as the authors can ascertain) there has been no international debate as to how nurses should be educationally prepared to support this group of people and currently different systems are evident including: • Specialist pre-qualifying educational courses in intellectual disability nursing (UK and Ireland) accompanied by limited inclusion in other fields of pre-qualifying specialism (such as adult nursing). • Generic pre-qualifying educational courses with an optional post qualifying specialist qualification (for example the Developmental Disabilities Nurses Association accreditation in the USA). • Generic pre-qualifying educational courses with no provision for post registration education focussing on the needs of people with intellectual disabilities (for example, Canada). Within generic curricula it is unclear as to what extent (if any) the needs of people with intellectual disabilities are explored and whether their inclusion is mandatory or optional. Furthermore 48
CN
Volume 49, December 2014
there seems to be an absence of comparative studies that examine the outcomes of these differing educational approaches in terms of their impact on the health of people with intellectual disabilities. Despite acknowledgement that nurses feel ill equipped to meet the needs of people with intellectual disabilities it appears to be an aspect of nursing care and education that has, to date, received only minimal attention. Conclusions International evidence demonstrates that the health needs of people with intellectual disabilities are not currently being adequately addressed and that the contribution that nurses could make to reducing disparities may be compromised by a lack of appropriate education. However, what constitutes appropriate and effective education in this context is currently unclear and there is a need to compare and evaluate both educational approaches and their impact on patient care. A failure to do so raises issues of social justice and challenges the extent to which respect for human rights is ‘inherent’ to nursing. Without action the charge of ‘indifference’ will remain. References
Bradbury-Jones, C., Rattray, J., Jones, M., & MacGillivray, S. (2013). Promoting the health, safety and welfare of adults with learning disabilities in acute care settings: A structured literature review. Journal of Clinical Nursing, 22, 1497–1509. Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. London, England: HMSO. Emerson, E., Baines, S., Allerton, L., & Welch, V. (2012). Health inequalities and people with learning disabilities in the UK. London, England: Department of Health. Emerson, E., & Hatton, C. (2004). Estimating the current need/demand for supports for people with learning disabilities in England. Lancaster, England: Lancaster University: Institute for Health Research. Glover, G., & Ayub, M. (2010). How people with learning disabilities die. London, England: Department of Health. Heslop, P., Blair, P., Fleming, P., Houghton, M., Marriott, A., & Russ, L. (2013). Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol, England: Norah Fry Research Centre.
© eContent Management Pty Ltd
Meeting the needs of people with intellectual disabilities? International Council of Nurses. (2012). The international council of nurses code of ethics for nurses. Geneva, Switzerland: Author. Krahn, G. L., Hammond, L., & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12, 70–82. Maulik, P. K., Mascarenhas, M. N., Mathers, C. D., Dua, T., & Saxena, S. (2011). Prevalence of intellectual disability: A meta-analysis of population-based studies. Research in Developmental Disabilities, 32, 419–436. Mencap. (2007). Death by indifference. London, England: Author. Mencap. (2012). Death by indifference: 74 deaths and counting. A progress report. London, England: Author. Mercier, C., Saxena, S., Lecomte, J., Cumberera, M. G., & Harnois, G. (2008). WHO Atlas on global
CN
resources for persons with intellectual disabilities 2007: Key findings relevant to low- and middleincome countries. Journal of Policy and Practice in Intellectual Disabilities, 5(2), 81–88. Ouellette-Kuntz, H., Minnes, P., Garcin, N., Martin, C., Lewis, M. E. S., & Holden, J. J. A. (2005). Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health, 96(2), 8–20. Read, S., & Rushton, A. (2013). Cultivating understanding of health issues for adults with intellectual disabilities. Nurse Education Today, 33(2013), 1020–1025. United Nations. (2006). The convention on the rights of persons with disabilities. New York, NY: Author. World Health Organisation. (2007). Atlas. Global resources for persons with intellectual disabilities. Geneva, Switzerland: Author.
ORDER FORM Advances in Contemporary Nurse Education (3rd edn) Editors: Louise D Hickman, Judy Mannix, Stephen Neville; ISBN 978-1-921980-45-9 A special issue of Journal of Contemporary Nurse (Volume 49, December 2014) Prices include airmail freight on all orders and GST (for Australian customers) Australia, New Zealand and Pacific: Institutions AU$126.50; Individuals AU$66.00. ROW: Institutions US$126.50; Individuals US$66.00. Students receive a 20% discount on the respective individual price against proof of student identity. Number of copies:
Total: AU$
Total: US$
o A PayPal transfer has been made to [email protected] o A bank cheque/money order to the address below o A Direct Deposit / SWIFT transfer has been made to BSB 803-140 Acct 14073170 o Please charge this purchase to my MasterCard/Visa (a 4% service charge applies for bank fees) My full card number is: Cardholder Name:
/
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Expiry date:
/
Signature:
Please send this order to the address below by airmail: Name of Institution:
Name of Individual:
Street address (or PO Box): City:
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Tel. (with area code): Email:
Zipcode:
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Fax (with area code): Your reference:
Fax the completed order form to +61-7-5430-2299, use PayPal, Direct Deposit OR post with cheque to: eContent Management Pty Ltd, Innovation Centre Sunshine Coast, 90 Sippy Downs Drive, Unit IC 1.20, SIPPY DOWNS, QLD 4556, Australia; Tel.: +61-7-5430-2290; PayPal – Email: [email protected]; www.e‑contentmanagement.com
© eContent Management Pty Ltd
Volume 49, December 2014
CN
49
Copyright of Contemporary Nurse: A Journal for the Australian Nursing Profession is the property of eContent Management Pty. Ltd. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
