PARTICIPATORY EXPLORATION OF FACTORS INFLUENCING THE HEALTH OF PEOPLE WITH INTELLECTUAL DISABILITIES IN AN URBAN DISTRICT:
A PHOTOVOICE STUDY
Keywords:
People with Intellectual Disabilities, Participatory Health Research, Photovoice, Municipal Strategies of Health PromotionAbstract
People with intellectual disabilities (ID) may face multiple disadvantages regarding their physical and mental health. They tend to are more vulnerable to risks of illness (associated with their impairment, medication intake or social determinants, like low socio-economic status) and are confronted with various barriers in health care and health promotion (e. g. communication or programmatic barriers). This study aims to gain a better understanding of the health-relevant factors people with ID experience in their everyday life in an urban area in Germany. An inclusive research workshop was held at the Catholic University of Applied Sciences Berlin. Ten adults with ID and six members of the university (two students, four academic researchers) joined the workshop and worked together as a research group. Photovoice, a participatory research methodology, was utilized. The research group collected data by taking photographs and discussing the pictures within the group. This process resulted in a set of qualitative categories and themes. The health-relevant factors identified were multifaceted. They ranged from housing and working conditions to the effects of keeping pets or being affected by racism and discrimination. The findings were prepared in form of an exhibition, providing a basis for developing municipal strategies for inclusive health promotion.
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References
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Carulla, L.S., Reed, G.M., Vaez-Azizi, L.M., Cooper, S.-A., Leal, R.M., Bertelli, M., Adnams, C., Cooray, S., Deb, S., Dirani, L.A., Girimaji, S.C., Katz, G., Kwok, H., Luckasson, R., Simeonsson, R., Walsh, C., Munir, K. and Saxena, S., 2011, Intellectual developmental disorders. Towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD-11, World Psychiatry, 10(3), 175–180.
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Koritsas, S. and Iacono, T., 2015, Weight, nutrition, food choice, and physical activity in adults with intellectual disability, Journal of intellectual disability research JIDR, 60(4), 355-364.
Krnjacki, L., Emerson, E., Llewellyn, G. and Kavanagh, A.M., 2016, Prevalence and risk of violence against people with and without disabilities. Findings from an Australian population-based study, Australian and New Zealand journal of public health, 40(1), 16–21.
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Maulik, P.K., Mascarenhas, M.N., Mathers, C.D., Dua, T. and Saxena, S., 2011, Prevalence of intellectual disability. A meta-analysis of population-based studies, Research in developmental disabilities, Vol. 32 No. 2, pp. 419–436.
Morgan, V.A., Leonard, H., Bourke, J. and Jablensky, A., 2008, Intellectual disability co-occurring with schizophrenia and other psychiatric illness. Population-based study, The British journal of psychiatry the journal of mental science, Vol. 193 No. 5, pp. 364–372.
O'Dwyer, M., Peklar, J., McCallion, P., McCarron, M. and Henman, M.C., 2016, Factors associated with polypharmacy and excessive polypharmacy in older people with intellectual disability differ from the general population. A cross-sectional observational nationwide study, BMJ open, 6(4), e010505.
Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S. and Hallam, A., 2000, Receipt of psychotropic medication by people with intellectual disability in residential settings, Journal of Intellectual Disability Research, 44(6), 666–676.
Roser, J.-M., Budroni, H. and Schnepp, W., 2011, Entwicklung einer Zielvereinbarung zur barrierefreien Krankenhausversorgung von Menschen mit Mehrfachbehinderungen: Abschlussbericht zum Projekt, Date of access: 17/07/2017. http://www.barrierefreiheit.de/tl_files/bkb-downloads/Projekte/barrierefreies_krankenhaus_mehrfachbehinderung/endfassung_abschlussbericht_barrierefreies_krankenhaus_bvjn_uwh_2011_druckfassung.pdf
Stancliffe, R.J., Lakin, K.C., Doljanac, R., Byun, S.-Y., Taub, S., Chiri, G. and Ferguson, P., 2007, Loneliness and Living Arrangements, Intellectual and Developmental Disabilities, 45(6), 380–390.
Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M., Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan, A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A. and Crawford, M., 2008, Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability. A randomised controlled trial, The Lancet, 371(9606), 57–63.
Unger, H. von, 2014, Beispiele der methodischen Umsetzung. In: Unger, H. von (Ed.), Partizipative Forschung, (Wiesbaden: Springer Fachmedien Wiesbaden), pp. 69–83.
Walsh, P.N., Hall, L. and Ryan, D., 2008, POMONA II Final Report. Health Indicators for People with Intellectual Disability: Using an Indicator Set. Date of access: 07/07/2015. http://www.pomonaproject.org/report.php
Wang, C. and Burris, M.A., 1994, Empowerment through photo novella: portraits of participation, Health education quarterly, 21(2), 171–186.
Wang, C. and Burris, M.A., 1997, Photovoice: concept, methodology, and use for participatory needs assessment, Health education & behavior the official publication of the Society for Public Health Education, 24(3), 369–387.
Wang, C.C., 1999, Photovoice. A participatory action research strategy applied to women's health, Journal of women's health, 8(2), 185–192.
Wolfensberger, W., 1999, A contribution to the history of Normalization, with primary emphasis on the establishment of Normalization in North America between 1967-1975. In: Flynn, R.J. and Lemay, R. (Eds.), A Quarter-Century of Normalization and Social Role Valorization: Evolution and Impact, (University of Ottawa Press / Les Presses de l’Université d’Ottawa), pp. 125–159.
World Health Organization (WHO), 2003, Social determinants of health: The solid facts, (Copenhagen: World Health Organization, Regional Office for Europe).
Allweiss, T., Burtscher, R. and Perowanowitsch, M., 2016, Aktuelle Forschungsprojekte. Partizipative Gesundheitsforschung mit Menschen mit Lernschwierigkeiten – Das Projekt GESUND!, Vierteljahresschrift für Heilpädagogik und ihre Nachbargebiete, 85(3) 257-259.
Amt für Statistik Berlin-Brandenburg, 2016, Einwohnerinnen und Einwohner im Land Berlin am 31. Dezember 2016. Grunddaten, Statistischer Bericht A I 5 – hj 2 / 16.
Bittles, A.H., Petterson, B.A., Sullivan, S.G., Hussain, R., Glasson, E.J. and Montgomery, P.D. 2002, The influence of intellectual disability on life expectancy, The journals of gerontology. Series A, Biological sciences and medical sciences, 57(7), M470-2.
Buchner, T., Koenig, O. and Schuppener, S. (Eds.), 2016, Inklusive Forschung: Gemeinsam mit Menschen mit Lernschwierigkeiten forschen (Bad Heilbrunn, DE: Verlag Julius Klinkhardt).
Burtscher, R., 2014, Gesundheitsförderung und Gesundheitsbildung mit Menschen mit Lernschwierigkeiten, Erwachsenenbildung und Behinderung, 2, 4–11.
Carulla, L.S., Reed, G.M., Vaez-Azizi, L.M., Cooper, S.-A., Leal, R.M., Bertelli, M., Adnams, C., Cooray, S., Deb, S., Dirani, L.A., Girimaji, S.C., Katz, G., Kwok, H., Luckasson, R., Simeonsson, R., Walsh, C., Munir, K. and Saxena, S., 2011, Intellectual developmental disorders. Towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD-11, World Psychiatry, 10(3), 175–180.
Cooper, S.-A., McLean, G., Guthrie, B., McConnachie, A., Mercer, S., Sullivan, F. and Morrison, J., 2015, Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis, BMC family practice, 16(110), 1-11.
Cooper, S.-A., Smiley, E., Morrison, J., Williamson, A. and Allan, L., 2007, Mental ill-health in adults with intellectual disabilities. Prevalence and associated factors, The British journal of psychiatry the journal of mental science, 190, 27–35.
Dahlgren, G. and Whitehead, M., 1991, Policies and strategies to promote social equity in health: Background document to WHO – Strategy paper for Europe, working paper, (Stockholm), Date of access: 21/04/2017. http://www.iffs.se/en/publications/working-papers/policies-and-strategies-to-promote-social-equity-in-health/
Doan, T.N., Lennox, N.G., Taylor-Gomez, M. and Ware, R.S., 2013, Medication use among Australian adults with intellectual disability in primary healthcare settings. A cross-sectional study, Journal of intellectual & developmental disability, 38(2), 177–181.
Emerson, E., 2010, Self-reported exposure to disablism is associated with poorer self-reported health and well-being among adults with intellectual disabilities in England. A cross-sectional survey, Public health, 124(12), 682–689.
Emerson, E., Hatton, C., Baines, S. and Robertson, J., 2016, The physical health of British adults with intellectual disability. Cross sectional study, International journal for equity in health, 15(11), 1-9.
Emerson, E., Robertson, J., Baines, S. and Hatton, C., 2014, The self-rated health of British adults with intellectual disability, Research in developmental disabilities, 35(3), 591–596.
Gilmore, L. and Cuskelly, M., 2014, Vulnerability to Loneliness in People with Intellectual Disability. An Explanatory Model, Journal of Policy and Practice in Intellectual Disabilities, 11(3), 192–199.
Hasseler, M. 2015, Menschen mit geistigen und mehrfachen Behinderungen in der akut-stationären Versorgung, Deutsche medizinische Wochenschrift (1946), 40(21), e217-23.
Hatton, C. and Emerson, E., 2015, Introduction. In: Hatton, C. and Emerson, E. (Eds.), Health Disparities and Intellectual Disabilities, International Review of Research in Developmental Disabilities, Vol. 48, (New York: Elsevier), pp. 1–9.
Haveman, M. and Stöppler, R., 2014, Gesundheit und Krankheit bei Menschen mit geistiger Behinderung, (Stuttgart: Kohlhammer).
Heslop, P., Blair, P.S., Fleming, P., Hoghton, M., Marriott, A. and Russ, L., 2013, The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK. A population-based study, The Lancet, 383(9920), 889–895.
International Collaboration for Participatory Health Research (ICHPR), 2013, Position Paper 1: What is Participatory Health Research? Version: Mai 2013, Date of access: 21/11/2016. http://www.icphr.org/position-papers/position-paper-no-1.
Jagosh, J., Macaulay, A.C., Pluye, P., Salsberg, J., Bush, P.L., Henderson, J., Sirett, E., Wong, G., Cargo, M., Herbert, C.P., Seifer, S.D., Green, L.W. and Greenhalgh, T., 2012, Uncovering the benefits of participatory research: implications of a realist review for health research and practice, The Milbank quarterly, 90(2), 311–346.
Koritsas, S. and Iacono, T., 2015, Weight, nutrition, food choice, and physical activity in adults with intellectual disability, Journal of intellectual disability research JIDR, 60(4), 355-364.
Krnjacki, L., Emerson, E., Llewellyn, G. and Kavanagh, A.M., 2016, Prevalence and risk of violence against people with and without disabilities. Findings from an Australian population-based study, Australian and New Zealand journal of public health, 40(1), 16–21.
Kuckartz, U., 2016, Qualitative Inhaltsanalyse. Methoden, Praxis, Computerunterstützung, 3. edition, (Beltz Juventa).
LGK NRW, 2013, 22. Landesgesundheitskonferenz Nordrhein-Westfalen: Von der Integration zur Inklusion: Gesundheitliche Versorgung von Menschen mit Behinderungen verbessern. Date of access: 12/07/2017 https://www.mgepa.nrw.de/mediapool/pdf/gesundheit/LGK_2013_Entschliessung.pdf
Llewellyn, G., Vaughan, C. and Emerson, E., 2015, Discrimination and the Health of People with Intellectual Disabilities, in Hatton, C. and Emerson, E. (Eds.), Health Disparities and Intellectual Disabilities, International Review of Research in Developmental Disabilities, Vol. 48, Elsevier, New York, pp. 43–72.
Maulik, P.K., Mascarenhas, M.N., Mathers, C.D., Dua, T. and Saxena, S., 2011, Prevalence of intellectual disability. A meta-analysis of population-based studies, Research in developmental disabilities, Vol. 32 No. 2, pp. 419–436.
Morgan, V.A., Leonard, H., Bourke, J. and Jablensky, A., 2008, Intellectual disability co-occurring with schizophrenia and other psychiatric illness. Population-based study, The British journal of psychiatry the journal of mental science, Vol. 193 No. 5, pp. 364–372.
O'Dwyer, M., Peklar, J., McCallion, P., McCarron, M. and Henman, M.C., 2016, Factors associated with polypharmacy and excessive polypharmacy in older people with intellectual disability differ from the general population. A cross-sectional observational nationwide study, BMJ open, 6(4), e010505.
Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S. and Hallam, A., 2000, Receipt of psychotropic medication by people with intellectual disability in residential settings, Journal of Intellectual Disability Research, 44(6), 666–676.
Roser, J.-M., Budroni, H. and Schnepp, W., 2011, Entwicklung einer Zielvereinbarung zur barrierefreien Krankenhausversorgung von Menschen mit Mehrfachbehinderungen: Abschlussbericht zum Projekt, Date of access: 17/07/2017. http://www.barrierefreiheit.de/tl_files/bkb-downloads/Projekte/barrierefreies_krankenhaus_mehrfachbehinderung/endfassung_abschlussbericht_barrierefreies_krankenhaus_bvjn_uwh_2011_druckfassung.pdf
Stancliffe, R.J., Lakin, K.C., Doljanac, R., Byun, S.-Y., Taub, S., Chiri, G. and Ferguson, P., 2007, Loneliness and Living Arrangements, Intellectual and Developmental Disabilities, 45(6), 380–390.
Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M., Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan, A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A. and Crawford, M., 2008, Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability. A randomised controlled trial, The Lancet, 371(9606), 57–63.
Unger, H. von, 2014, Beispiele der methodischen Umsetzung. In: Unger, H. von (Ed.), Partizipative Forschung, (Wiesbaden: Springer Fachmedien Wiesbaden), pp. 69–83.
Walsh, P.N., Hall, L. and Ryan, D., 2008, POMONA II Final Report. Health Indicators for People with Intellectual Disability: Using an Indicator Set. Date of access: 07/07/2015. http://www.pomonaproject.org/report.php
Wang, C. and Burris, M.A., 1994, Empowerment through photo novella: portraits of participation, Health education quarterly, 21(2), 171–186.
Wang, C. and Burris, M.A., 1997, Photovoice: concept, methodology, and use for participatory needs assessment, Health education & behavior the official publication of the Society for Public Health Education, 24(3), 369–387.
Wang, C.C., 1999, Photovoice. A participatory action research strategy applied to women's health, Journal of women's health, 8(2), 185–192.
Wolfensberger, W., 1999, A contribution to the history of Normalization, with primary emphasis on the establishment of Normalization in North America between 1967-1975. In: Flynn, R.J. and Lemay, R. (Eds.), A Quarter-Century of Normalization and Social Role Valorization: Evolution and Impact, (University of Ottawa Press / Les Presses de l’Université d’Ottawa), pp. 125–159.
World Health Organization (WHO), 2003, Social determinants of health: The solid facts, (Copenhagen: World Health Organization, Regional Office for Europe).
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Published
2017-12-16
How to Cite
Allweiss, T., Perowanowitsch, M., Burtscher, R., & Wright, M. T. (2017). PARTICIPATORY EXPLORATION OF FACTORS INFLUENCING THE HEALTH OF PEOPLE WITH INTELLECTUAL DISABILITIES IN AN URBAN DISTRICT:: A PHOTOVOICE STUDY. Proceedings of the International Conference on Public Health, 3(2), 237–245. Retrieved from http://tiikmpublishing.com/proceedings/index.php/icoph/article/view/132
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