Instytucjonalne uwarunkowania życia osób z niepełnosprawnością intelektualną zamieszkujących domy pomocy społecznej w Polsce

Autor

DOI:

https://doi.org/10.18778/1733-8069.18.2.04

Słowa kluczowe:

autonomia, kontrola, dom pomocy społecznej, opieka instytucjonalna, niepełnosprawność intelektualna, relacje interpersonalne

Abstrakt

Celem artykułu jest ukazanie, charakteryzującego się swoistą ambiwalencją, systemu instytucjonalnej opieki nad osobami z niepełnosprawnością intelektualną w Polsce. Cały wywód opiera się na dwóch zasadniczych i dychotomicznych kategoriach: kontroli i podporządkowaniu versus autonomii i niezależności. Każda z tych kategorii jest powiązana z jedną z dwóch głównych perspektyw postrzegania domu pomocy społecznej. Pierwszą, wywodzącą się z goffmanowskiej wizji instytucji totalnej, w której jednostkę przedstawia się jako uprzedmiotowiony obiekt działań innych osób, demaskując sytuację izolowania i zależności osobistej. Drugą reprezentuje model relacji personelu i podopiecznych, charakteryzujący się indywidualistycznym podejściem do potrzeb osoby niepełnosprawnej, z poszanowaniem jej prawa do autonomii i samostanowienia. Konfrontacja tych dwóch perspektyw i obszarów zagadnień jest przedmiotem rozważań w niniejszym artykule.

Pobrania

Brak dostępnych danych do wyświetlenia.

Biogram autora

Jakub Niedbalski - University of Lodz

Jakub Niedbalski, a sociologist, a staff member employed in the Department of Sociology of Organization and Management of the Institute of Sociology, University of Lodz; committed to both teaching and research. He specializes in the computer-assisted analysis of qualitative data, qualitative research methods, the sociology of disability, and the sociology of sport. He researches the social activation of people with disabilities as well as the situation of families with people with disabilities, including entities and institutions supporting them. He is the author of several dozens of scientific publications devoted to the issues of disability, social assistance, and the qualitative research methodology.

Bibliografia

Arndt, Sandra A., Moira Konrad, and David W. Test. 2006. “Effects of the self-directed IEP on student participation in planning meetings.” Remedial and Special Education 27(4):194-207. doi: https://doi.org/10.1177/2165143414544359
Google Scholar DOI: https://doi.org/10.1177/07419325060270040101

Barnes, Coli and Geof Mercer. 2003. Disability. Cambridge, MA: Polity Press.
Google Scholar

Bekkema, Nienke et al. 2015. “‘To move or not to move’: A national survey among professionals on beliefs and considerations about the place of end-of-life care for people with ID.” Journal of Intellectual Disability Research 59(3):226-237. doi: https://doi.org/10.1111/jir.12130
Google Scholar DOI: https://doi.org/10.1111/jir.12130

Björnsdóttir, Kristin, Guorun V. Stefánsdóttir, and Astriour Stefánsdóttir. 2015. “‘It’s my life’: Autonomy and people with ID.” Journal of ID 19(1):5-21. doi: https://doi.org/10.1177/1744629514564691
Google Scholar DOI: https://doi.org/10.1177/1744629514564691

Brown, Fredda et al. 1998. “Selfdetermination for individuals with the most severe disabilities: Moving beyond Chimera1.” The Journal of the Association for Persons with Severe Handicaps 23(1):17-26. doi: https://doi.org/10.2511/rpsd.23.1.17
Google Scholar DOI: https://doi.org/10.2511/rpsd.23.1.17

Carlson, Licia. 2010. The faces of intellectual disability: Philosophical reflections. Bloomington. IN: Indiana University Press.
Google Scholar

Charmaz, Kathy. 2006. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA: Sage.
Google Scholar

Charmaz, Kathy. 2019. “Experiencing Stigma and Exclusion: The Influence of Neoliberal Perspectives, Practices, and Policies on Living with Chronic Illness and Disability.” Symbolic Interaction 43(1):21-45. doi: https://doi.org/10.1002/symb.432
Google Scholar DOI: https://doi.org/10.1002/symb.432

Chartres, Dianne and John Brayley. 2010. Office of the public advocate South Australia: Submission to the productivity commission inquiry into disability care and support. Collinswood: Office of the Public Advocate.
Google Scholar

Crocker, Allen C. 1988. “Medical-care for adults with developmental-disabilities.” Jama-Journal of the American Medical Association 260(10):1455-1455. doi: https://doi.org/10.3389/fpubh.2014.00083
Google Scholar DOI: https://doi.org/10.1001/jama.260.10.1455

DuBois, Brenda and Karla K. Miley. 2011. “Social Work: An Empowering Profession. 7th Edition. Boston, MA: Pearson.
Google Scholar

Dunn, Michael C., Isabel C. Clare, and Anthony J. Holland. 2008. “Substitute decision-making for adults with ID living in residential care: Learning through experience.” Health Care Analysis 16(1):52-64. doi: https://doi.org/10.1007/s10728-007-0053-9
Google Scholar DOI: https://doi.org/10.1007/s10728-007-0053-9

Dunn, Michael C., Isabel C. Clare, and Anthony J. Holland. 2010. “Living ‘a life like ours’: Support workers accounts of substitute decision-making in residential care homes for adults with intellectual disabilities.” Journal of Intellectual Disability Research 54(2):144-160. doi: https://doi.org/10.1111/j.1365-2788.2009.01228.x
Google Scholar DOI: https://doi.org/10.1111/j.1365-2788.2009.01228.x

Geniene, Rasa and Egle Sumskiene. 2016. “Reform of the residential care in Lithuania from the perspective of institutional theory.” Socialine Teorija Empirija Politikair Praktika 12:74-89. doi: https://doi.org/10.15388/STEPP.2016.12.9818
Google Scholar DOI: https://doi.org/10.15388/STEPP.2016.12.9818

Glaser, Barney. 1978. Theoretical Sensitivity. San Francisco: Sociology Press.
Google Scholar

Glaser, Barney and Anselm L. Strauss. 1967. The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company.
Google Scholar

Goffman, Erving. 1961. Asylums: Essays on Social Situation of Mental Patients and Other Inmates. Garden City: Doubleday Anchor Book.
Google Scholar

Goffman, Erving. 1967. Interaction Ritual: Essays on Face-to-Face Behavior. New York: Doubleday Anchor.
Google Scholar

Goffman, Erving. 1979. Gender Advertisements. New York: Harper and Row.
Google Scholar

Gonzalez-Rodriguez, Ruben and Maria C. Fernandez. 2017. “Attention to disability in residential care facilities.” Cuadernos de Trabajo Social 30(2):403-415. doi: https://doi.org/10.5093/pi2018a4
Google Scholar DOI: https://doi.org/10.5209/CUTS.52098

Goodley, Dan. 2000. Self-advocacy in the lives of people with intellectual disabilities: The politics of resilience. Buckingham: Open University Press.
Google Scholar

Granosik, Mariusz. 2006. Profesjonalny wymiar pracy socjalnej. Katowice: Wydawnictwo Naukowe “Śląsk.”
Google Scholar

Harris, Nicola, Antonia Beringer, and Margaret Fletcher. 2016. “Families’ priorities in life-limiting illness: Improving quality with online empowerment.” Archives of Disease in Childhood 101(3):247-252.
Google Scholar DOI: https://doi.org/10.1136/archdischild-2015-308769

Hawkins, Rebecca, Michael Redley, and Anthony J. Holland. 2011. “Duty of care and autonomy: How support workers managed the tension between protecting service users from risk and promoting their independence in a specialist group home.” Journal of Intellectual Disability Research 55(9):873-884. doi: https://doi.org/10.1111/j.1365-2788.2011.01445.x
Google Scholar DOI: https://doi.org/10.1111/j.1365-2788.2011.01445.x

Hoole, Lucy and Sally Morgan. 2011. “‘It’s only right that we get involved’: Service-user perspectives on involvement in learning disability services.” British Journal of Learning Disabilities 39(1):5-10. doi: https://doi.org/10.1111/j.1468-3156.2009.00563.x
Google Scholar DOI: https://doi.org/10.1111/j.1468-3156.2009.00563.x

Kelly, Fionnola et al. 2019. “A case-study of policy change in residential service provision for adult people with intellectual disability in Ireland.” Health and Social Care in the Community 27(5):E760-E768. doi: https://doi.org/10.1111/hsc.12803.
Google Scholar DOI: https://doi.org/10.1111/hsc.12803

Klepikova, Anna. 2019. “Residential care institutions for people with disabilities in Russia: questioning totality.” Journal of Social Policy Studies 17(3):453-464. doi: https://doi.org/10.17323/727-0634-2019-17-3-453-464
Google Scholar DOI: https://doi.org/10.17323/727-0634-2019-17-3-453-464

Lennox, Nicholas G., Justine N. Diggins, and Antoni M. Ugoni. 1997. “The general practice care of people with intellectual disability: Barriers and solutions.” Journal of Intellectual Disability Research 41:380-390. doi: https://doi.org/10.1111/j.1365-2788.1997.tb00725.x
Google Scholar DOI: https://doi.org/10.1111/j.1365-2788.1997.tb00725.x

Lincoln, Yvonna S. and Egon G. Guba. 1985. Naturalistic Inquiry. Beverly Hills, CA: Sage.
Google Scholar DOI: https://doi.org/10.1016/0147-1767(85)90062-8

Lonkila, Markku. 1995. “Grounded theory as an emerging paradigm for computer-assisted qualitative data analysis.” Pp. 41-51 in Computer-Aided Qualitative Data Analysis, edited by U. Kelle. London: Sage.
Google Scholar

Mahone, Irma H. et al. 2011. “Shared decision-making in mental health treatment: Qualitative findings from stakeholder focus groups.” Archives of Psychiatric Nursing 25(6):27-36. doi: https://doi/org/10.1016/j.apnu.2011.04.003
Google Scholar DOI: https://doi.org/10.1016/j.apnu.2011.04.003

Marsland, Dave, Peter Oakes, and Caroline White. 2015. “Abuse in care? A research project to identify early indicators of concern in residential and nursing homes for older people.” Journal of Adult Protection 17(2):111-125. doi: https://doi.org/10.1108/JAP-08-2014-0027
Google Scholar DOI: https://doi.org/10.1108/JAP-08-2014-0027

Meininger, Herman P. 2001. “Autonomy and professional responsibility in care for persons with ID.” Nursing Philosophy 2(3):240-250. doi: https://doi.org/10.1046/j.1466-769X.2000.00065.x
Google Scholar DOI: https://doi.org/10.1046/j.1466-769X.2000.00065.x

Olney, Marjorie F. 2001. “Communication strategies of adults with severe disabilities.” Rehabilitation Counseling Bulletin 44(2):87-94. doi: https://doi.org/10.1177/003435520104400205
Google Scholar DOI: https://doi.org/10.1177/003435520104400205

Patton, Michael Q. 2001. Qualitative evaluation and research methods. Thousand Oaks, CA: Sage.
Google Scholar

Richards, Lyn. 2005. Using NVivo in Qualitative Research. London, Los Angeles: Sage.
Google Scholar

Saunders, Benjamin, Jenny Kitzinger, and Celia Kitzinger. 2014. “Anonymising interview data: Challenges and compromise in practice.” Qualitative Research 15(5):616-632.
Google Scholar DOI: https://doi.org/10.1177/1468794114550439

Saunders, Benjamin, Jenny Kitzinger, and Celia Kitzinger. 2015. “Participant anonymity in the internet age: From theory to practice.” Qualitative Research in Psychology 12(2):125-137.
Google Scholar DOI: https://doi.org/10.1080/14780887.2014.948697

Shakespeare, Tom. 1996. “Disability, Identity and Difference.” Pp. 94-113 in Exploring the Divide Leeds, edited by C. Barnes and G. Mercer. Leeds: Disability Press.
Google Scholar

Strauss, Anselm L. and Juliet Corbin. 1990. Basics of Qualitative Research. London: Sage.
Google Scholar

Sumskiene, Egle and Urte L. Orlova. 2015. “Sexuality of ‘Dehumanized People’ across Post-Soviet Countries: Patterns from Closed Residential Care Institutions in Lithuania.” Sexuality and Culture 19(2):369-387. doi: https://doi.org/10.1177/0081246316678154
Google Scholar DOI: https://doi.org/10.1007/s12119-014-9262-1

Trip, Henrietta et al. 2016. “The role of key workers in supporting people with intellectual disability in the self-management of their diabetes: A qualitative New Zealand study.” Health and Social Care in the Community 24(6):789-798. doi: https://doi.org/10.1111/hsc.12262
Google Scholar DOI: https://doi.org/10.1111/hsc.12262

Wahmsley, Jan and Kelly Johnson. 2003. Inclusive research with people with learning disabilities: Past, present and futures. London, New York: Jessica Kingsley Publishers.
Google Scholar

Wehmeyer, Michael L, Abery, Brian H., Mithaug Dennis E., Stancliffe, Roger J. 2003. Theory in Self-Determination: Foundations for Educational Practice. Springfield, IL: Charles C Thomas Publisher, LTD.
Google Scholar

Wiltshier, Fiona. 2011. “Researching with NVivo.” Forum: Qualitative Social Research 12(1). doi: https://doi.org/10.17169/fqs-12.1.1628
Google Scholar

Opublikowane

2022-05-31

Jak cytować

Niedbalski, J. (2022). Instytucjonalne uwarunkowania życia osób z niepełnosprawnością intelektualną zamieszkujących domy pomocy społecznej w Polsce. Przegląd Socjologii Jakościowej, 18(2), 72–88. https://doi.org/10.18778/1733-8069.18.2.04

Numer

Dział

Artykuł

Inne teksty tego samego autora

1 2 > >>