Caregivers’ well-being in the context of intellectual disability: a systematic review of emotional and health-related needs
DOI:
https://doi.org/10.12923/pielxxiw-2026-0020Słowa kluczowe:
wykluczenie społeczne, polityka zdrowotna, niezaspokojone potrzeby zdrowotne, upośledzenie umysłowe, gotowość edukacyjnaAbstrakt
SAMOPOCZUCIE OPIEKUNOW W KONTEKŚCIE NIEPEŁNOSPRAWNOŚCI INTELEKTUALNEJ: PRZEGLĄD SYSTEMATYCZNY POTRZEB EMOCJONALNYCH I ZDROWOTNYCH
Wprowadzenie. Osoby z niepełnosprawnością intelektualną często napotykają poważne trudności w dostępie do odpowiednich usług opieki zdrowotnej. W literaturze naukowej zwraca się jednak uwagę na szereg niezaspokojonych potrzeb zdrowotnych oraz
kwestie związane z ogólnym samopoczuciem.
Cel pracy. Określenie i ocena poziomu dobrostanu oraz niezaspokojonych potrzeb zdrowotnych opiekunów osób z niepełnosprawnością intelektualną na podstawie aktualnego stanu literatury międzynarodowej. Niniejszy artykuł ma na celu podsumowanie i krytyczną analizę dostępnych danych, ze szczególnym uwzględnieniem głównych obciążeń psychospołecznych, wyzwań emocjonalnych oraz luk w zakresie opieki i wsparcia, z jakimi boryka się ta grupa społeczna.
Metoda. W okresie od stycznia do lutego 2025 r. przeprowadzono przegląd systematyczny. Poszukiwano artykułów dostępnych w języku greckim lub angielskim. Wykorzystano następujące bazy danych: PubMed, Medline, CINAHL, Scopus, Cochrane oraz ISI
– Web of Science.
Wyniki. Stan zdrowia tej grupy ludności jest wyraźnie gorszy w porównaniu z ogółem społeczeństwa, co wynika z niezaspokojonych potrzeb zdrowotnych, niewystarczającej liczby wyspecjalizowanego personelu medycznego i pracowników służby zdrowia oraz dominacji modelu medycznego. Model ten postrzega niepełnosprawność intelektualną jako trwały, nieodwracalny stan, który leczy się przede wszystkim za pomocą farmakoterapii o działaniu hamującym.
Bibliografia
1. Harrison JAK, Thomson R, Banda HT, et al. Access to health care for people with disabilities in rural Malawi: what are the barriers? BMC Public Health. 2020;20(1):833. https://doi.org/10.1186/s12889-020-08691-9
2. Kinnear D, Morrison J, Allan L, et al. Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. BMJ Open. 2018;8:e018292. https://doi.org/10.1136/bmjopen-2017-018292
3. Sheehan RB, Herring MP, Campbell MJ. Associations between motivation and mental health in sport: a test of the hierarchical model of intrinsic and extrinsic motivation. Front. Psychol. 2018;9:707. https://doi.org/10.3389/fpsyg.2018.00707
4. Noll S. & Trent J. Mental retardation in America: a historical reader. NY: New York University Press; 2004, p. 506.
5. Kaplan R. & Saccuzzo D. Psychological testing: principles, applications, and issues. Mason OH: Nelson Education; 2017.
6. Argyriadis A, et al. Health promotion strategies for cardiovascular disease in the community of Uganda: Policies, challenges, and pathways to a healthier future. International Journal of Science and Research Archive. 2023;10(01):360-365. https://doi.org/10.30574/ijsra.2023.10.1.0759
7. 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(2), 419–436. https://doi.org/10.1016/j.ridd.2010.12.018
8. McBride O, Murphy J, Shevlin M, et al. Monitoring the psychological, social, and economic impact of the COVID‐19 pandemic in the population: Context, design and conduct of the longitudinal COVID‐19 psychological research consortium (C19PRC) study. International journal of methods in psychiatric research. 2021;30(1):e1861. https://doi.org/10.1002/mpr.1861
9. Tatuskar P, Vandana V. Mental retardation and oral health: An insight. JCIM. 2021;2(6):1397. https://doi.org/10.52768/2766-7820/1397
10. United Nations, Political Participation of Persons with Intellectual or Psychosocial Disabilities, 2021, Retrieved at 05/11/2024, available at: https://www.undp.org/ publications/political-participation-persons intellectual-or-psychosocial-disabilities
11. Council of Europe Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to Biology and Medicine: A Convention on Human Rights and Biomedicine, Oviedo, 4 April 1997, in force 1 December 1999, ETS No. 164.
12. Argyriadis A, et al. Translation and validation in Greek of the Central Vancouver Island Multicultural Society Cultural Competence Self-Assessment Checklist for health professionals. Population Medicine. 2022;4:16. https://doi.org/10.18332/popmed/150202
13. World Health Organization. Atlas: global resources for persons with intellectual disabilities: 2007. Switzerland: World Health Organization Press. Retrieved 14/01/24 at https://tile.loc.gov/storageservices/master/gdc/gdcebookspublic/20/21/76/32/ 35/2021763235/2021763235.pdf
14. Vlachou A, Didaskalou E, Papananou I. Conceptual approaches to disability and their implications for the education of people with disabilities. In: Zoniou-Sideri A, Nteropoulou-Nterou E, Vlachou-Balafouti A (eds.). Disability and educational policy: A critical approach to special and inclusive education. Athens: Pedio; 2012, p. 65-89.
15. Reynolds JM. “I’d rather be dead than disabled” – The ableist conflation and the meanings of disability. Review of Communication. 2017;17(3):149-163. https://doi.org/10.1080/15358593.2017.1331255
16. Smart JF, Smart DW. Models of disability: Implications for the counseling profession. Journal of Counseling & Development. 2006;84(1):29-40. https://doi.org/10.1002/j.1556-6678.2006.tb00377.x
17. Oliver M. The politics of disablement, UK: Palgrave Macmillan;1990.
18. Beaudry JS. Beyond (models of) disability? The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine. 2016;41(2):210-228. https://doi.org/10.1093/jmp/jhv063
19. Reindal SM. Disability, capability, and special education: Towards a capability‐based theory. European Journal of Special Needs Education. 2009;24(2):155-168. https://doi.org/10.1080/08856250902793610
20. Durbin A, Sirotich F, Lunsky Y, et al. Unmet needs of adults in community mental health care with and without intellectual and developmental disabilities: a cross-sectional study. Community Ment. Health J. 2017;53:15-26. https://doi.org/10.1007/s10597-015-9961-6
21. Nicholson E, Doherty E, Guerin S, et al. Healthcare utilisation and unmet health needs in children with intellectual disability: a propensity score matching approach using longitudinal cohort data. J. Intellect. Disabil. Res. 2022;66(5):442-453. https://doi.org/10.1111/jir.12927
22. Gilliand M, Bernier Emch A, Perrenoud B. Adults with intellectual disabilities’ satisfaction regarding their hospitalization: A correlational descriptive study. Journal of Intellectual Disabilities. 2024;28(4):1137-1154. https://doi.org/10.1177/17446295231193461
23. Emerson E, Brigham P. The developmental health of children of parents with intellectual disabilities: cross sectional study. Res. Dev. Disabil. 2014;35(4):917-921. https://doi.org/10.1016/j.ridd.2014.01.006
24. Trent JW. Inventing the feeble mind: a history of mental retardation in the United States. USA: University of California Press; 1995.
25. Kinnear D, Morrison J, Allan L, et al. Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. BMJ Open. 2018;8:e018292. https://doi.org/10.1136/bmjopen-2017-018292
26. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and healthcare access for people with intellectual disabilities. Ment. Retard. Dev. Disabil. Res. Rev. 2006;12(1):70-82. https://doi.org/10.1002/mrdd.20098
27. Argyriadis A, Argyriadi A, Kopanakis E, et al. Mindfulness in nature: Promoting mental health and well-being for young children. Pol. Merkur. Lekarski. 2024;52(6):698-705. https://doi.org/10.36740/Merkur202406112. PMID: 39951637.
28. Ouellette-Kuntz H, Garcin N, Lewis ME, et al. Addressing health disparities through promoting equity for individuals with intellectual disability. Can. J. Public Health. 2005;96:S8-22. https://doi.org/10.1007/BF03403699
29. Argyriadis A, Katsarou DV, Drakopoulou O, et al. A mental health framework for resilience in children with chronic health conditions. [In:] Effective Practices for Mental Health Promotion in Education. Hershey (PA): IGI Global. 2025; p. 225-246. https://doi.org/10.4018/978-1-6684-9606-1.ch011
30. Sheehan R, Lunsky Y, Hassiotis A. Achieving better health for people with intellectual disability: the power of policy. BJ. Psych. Open. 2018;22;4(2):47-48. https://doi.org/10.1192/bjo.2017.9
31. Wagstaff J. Ethical issues in social work: adults with intellectual disabilities. CINAHL Information Systems. 2022. retrieved 03/09/23 at https://www.ebsco.com/sites/ default/f iles/acquiadam-assets/Social-Work-Reference-Center-Care-Sheet¬Ethical-Issues-in-Social-Work.pdf
32. Argyriadi A, Katsarou D, Patelarou A, et al. Digital Stress Scale (DSC): development and psychometric validation of a measure of stress in the digital age. Int. J. Environ. Res. Public Health. 2025;22(7):1080. https://doi.org/10.3390/ijerph22071080
33. Gormez A, Rana F, Varghese S. Pharmacological interventions for self-injurious behaviour in adults with intellectual disabilities: Abridged republication of a Cochrane systematic review. J. Psychopharmacol. 2014;28(7):624-632. https://doi.org/10.1177/0269881114531665
34. Emerson E, Brigham P. The developmental health of children of parents with intellectual disabilities: cross sectional study. Res. Dev. Disabil. 2014;35(4):917-921. https://doi.org/10.1016/j.ridd.2014.01.006
35. Haveman M, et al. Ageing and health status in adults with intellectual disabilities: results of the European POMONA II study. J. Intellect. Dev. Disabil. 2011;36(1):49-60. https://doi.org/10.3109/13668250.2010.549464
36. Wasfi R, Steinmetz-Wood M, Levinson D. Measuring the transportation needs of people with developmental disabilities: A means to social inclusion. Disabil. Health. J. 2017;10(2):356-360. https://doi.org/10.1016/j.dhjo.2016.10.008
37. Abbott S, McConkey R. The barriers to social inclusion as perceived by people with intellectual disabilities. J. Intellect. Disabil. 2006 Sep;10(3):275-87. https://doi.org/10.1177/1744629506067618
38. Ali A, et al. A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms. J. Intellect. Disabil. Res. 2021; 65(11):1010-1019. https://doi.org/10.1111/jir.12886
39. Stünkel-Grees N, Clausen J, Wünsch A. Ambulante Psychotherapie für Kinder und Jugendliche mit geistiger Behinderung (Outpatient Psychotherapy for Children and Adolescents with Intellectual Disability). Prax Kinderpsychol Kinderpsychiatr. 2018.67(3):224-238. https://doi.org/10.13109/prkk.2018.67.3.224
40. Hirdes JP. et al. The interRAI Suite of Mental Health Assessment Instruments: An Integrated System for the Continuum of Care. Front. Psychiatry. 2020;10:926. https://doi.org/10.3389/fpsyt.2019.00926
41. Wang A, et al. Effects of a school-based physical activity intervention for obesity, health-related physical fitness, and blood pressure in children with intellectual disability: a randomized controlled trial. IRJPEH. 2022;19(19):12015. https://doi.org/10.3390/ijerph191912015
42. Ring H, et al. Training nurses in a competency framework to support adults with epilepsy and intellectual disability: the EpAID cluster RCT. Health Technol. Assess. 2018;22(10):1-104. https://doi.org/10.3310/hta22100
43. Collins A, Rentschler R, Williams K, et al. Exploring barriers to social inclusion for disabled people: Perspectives from the performing arts. Journal of Management & Organization. 2022;28(2):308-328. https://doi.org/10.1017/jmo.2021.48
44. Oulton K, Wray J, Kenten C, et al. Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study. Southampton (UK): National Institute for Health and Care Research; 2022. https://doi.org/10.3310/NWKT5206
45. McConkey R, O’Hagan P, Corcoran J. Parental perceptions of family-centred supports for children with developmental disabilities. Int. J. Environ. Res. Public Health. 2023;20(5):4205. https://doi.org/10.3390/ijerph20054205
Pobrania
Opublikowane
Numer
Dział
Licencja
Prawa autorskie (c) 2026 Ioannis Andriopoulos, Evangelia Kotrotsiou, Alexandra Skitsou, Alexandros Argyriadis, Viky Chrysoula Piletska, Georgios Charalampous (Autor)
Utwór dostępny jest na licencji Creative Commons Uznanie autorstwa 4.0 Międzynarodowe.
