People with intellectual disabilities’ experiences of primary care health checks, screenings and GP consultations: a systematic review and meta-ethnography

References

• Ali, A. and Hassiotis, A. 2008. Illness in people with intellectual disabilities. BMJ, 336, 570–571.
   PubMedGoogle Scholar
• Ali, A., Scior, K., Ratti, V., Strydom, A., King, M. and Hassiotis, A. 2013. Discrimination and other barriers to accessing health care: Perspectives of patients with mild and moderate intellectual disability and their carers. PLoS One, 8, e70855.
   PubMed Web of Science ®Google Scholar
• Ayhan, C. H. B., Bilgin, H., Uluman, O. T., Sukut, O., Yilmaz, S. and Buzlu, S. 2020. A systematic review of the discrimination against sexual and gender minority in health care settings. International Journal of Health Services : Planning, Administration, Evaluation, 50, 44–61.
   PubMed Web of Science ®Google Scholar
• Baumbusch, J., Phinney, A. and Baumbusch, S. 2014. Practising family medicine for adults with intellectual disabilities: Patient perspectives on helpful interactions. Canadian Family Physician. College of Family Physicians of Canada, 60, e356–e361.
   Google Scholar
• Beighton, C., Victor, C., Carey, I. M., Hosking, F., DeWilde, S., Cook, D. G., Manners, P., Harris, T. 2019. 'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study…. Journal of Intellectual Disabilities : JOID, 23, 78–96.
   PubMed Web of Science ®Google Scholar
• Berger, R. 2015. Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15, 219–234.
   Web of Science ®Google Scholar
• Bollard, M. 2017. Health promotion and intellectual disability: Listening to men. Health & Social Care in the Community, 25, 185–193. Blackwell Publishing Ltd,
   PubMed Web of Science ®Google Scholar
• Britten, N., Campbell, R., Pope, C., Donovan, J., Morgan, M. and Pill, R. 2002. Using meta ethnography to synthesise qualitative research: A worked example. Journal of Health Services Research & Policy, 7, 209–215.
   PubMedGoogle Scholar
• Brown, A. A. and Gill, C. J. 2009. New Voices in women's health: Perceptions of women with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 47, 337–347.
   PubMed Web of Science ®Google Scholar
• Cardell, B. 2015. Reframing health promotion for people with intellectual disabilities. Global Qualitative Nursing Research, 2, 2333393615580305.
   Google Scholar
• Chapman, H. M. 2014. The health consultation experience for people with learning disabilities: A constructivist grounded theory study based on symbolic interactionism. Doctoral thesis. University of Chester.
   Google Scholar
• Chapman, H. M., Lovell, A. and Bramwell, R. 2018. Do health consultations for people with learning disabilities meet expectations? A narrative literature review. British Journal of Learning Disabilities, 46, 118–135. Blackwell Publishing Ltd,
   Web of Science ®Google Scholar
• Cook, T., Baxendale, L., Hill-Wilson, C., Bell, D., Dennis, M., McLeod, A. and Thompson, G. 2015. Improving the general health of people with learning difficulties in the UK: Experiences of the implementation of Annual Health Checks. Deutschland: Die Gesellschaft Erwachsenenbildung Und Behinderung.
   Google Scholar
• Critical Appraisal Skills Programme. 2017. Available at:<http://casp-uk.net/casp-tools-checklists/> [Accessed 2 August 2019].
   Google Scholar
• Cuypers, M., Tobi, H., Huijsmans, C. A. A., Gerwen, L., Hove, M., Weel, C., Kiemeney, L. A. L. M., Naaldenberg, J. and Leusink, G. L. 2020. Disparities in cancer-related healthcare among people with intellectual disabilities: A population-based cohort study with health insurance claims data . Cancer Medicine, 9, 6888–6895.
   PubMed Web of Science ®Google Scholar
• Deci, E. L. and Ryan, R. M. 2002. Handbook of self-determination research. United States: University of Rochester Press.
   Google Scholar
• Department of Health. 2001. Valuing People. Housing, Care and Support, 16–18.
   Google Scholar
• Department of Health. 2009. Valuing people now: Summary report including findings from learning disability partnership board self.  Available at https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/215891/dh_122387.pdf
   Google Scholar
• Disability Justice. 2021. Dehumanization, discrimination, and segregation. Available at: <http://disabilityjustice.org/justice-denied/dehumanization-discrimination-and-segregation/> [Accessed 30 January 2021].
   Google Scholar
• Disability Rights Commission. 2006. Equal treatment: Closing the Gap A formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. Available at: <http://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/DRC-Health-FI-main.pdf> [Accessed 9 August 2019].
   Google Scholar
• Ditchman, N., Kosyluk, K., Lee, E.-J. and Jones, N. 2016. How stigma affects the lives of people with intellectual disabilities: An overview. In: K. Scior, and S. Werner, eds. Intellectual disability and stigma. London: Palgrave Macmillan UK, pp.31–47.
   Google Scholar
• Doherty, A. J., Atherton, H., Boland, P., Hastings, R., Hives, L., Hood, K., James-Jenkinson, L., Leavey, R., Randell, E., Reed, J., Taggart, L., Wilson, N. and Chauhan, U. 2020. Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: An integrative review. BJGP Open, 4, bjgpopen20X101030.
   PubMedGoogle Scholar
• Emerson, E. and Baines, S. 2010. Health inequalities and people with learning disabilities in the UK. Available at: <http://strathprints.strath.ac.uk/34862/1/vid_7479_IHaL2010_3HealthInequality2010.pdf> [Accessed 19 March 2019].
   Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Engel, G. L. 1980. The clinical application of the biopsychosocial model. American Journal of Psychiatry, 137, 535–544.
   PubMed Web of Science ®Google Scholar
• Gates, B. 2010. The Valued People Project: Views of parents and people with learning disabilities on learning disability nursing and a specialist health workforce for the future.
   Google Scholar
• Giles, K., Ling, J. and Gordon, I. 2020. Can point‐of‐care testing improve access to diagnostic screening and testing for people with learning disabilities? Exploring perspectives to improve access and equity. British Journal of Learning Disabilities, 48, 28–36.
   Web of Science ®Google Scholar
• Hassiotis, A. 2020. The Intersectionality of Ethnicity/race and Intellectual and Developmental Disabilities: Impact on Health Profiles, Service Access and Mortality. Journal of Mental Health Research in Intellectual Disabilities, 13, 171–173.
   Web of Science ®Google Scholar
• Havercamp, S. M. and Scott, H. M. 2015. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8, 165–172. Elsevier Inc.,
   PubMed Web of Science ®Google Scholar
• Henderson, C., Noblett, J., Parke, H., Clement, S., Caff, A., Gale-Grant, O., Schulze, B., Druss, B. and Thornicroft, G. 2014. Mental health-related stigma in health care and mental health-care settings. The Lancet. Psychiatry, 1, 467–482.
   PubMed Web of Science ®Google Scholar
• Heslop, P., Blair, P. S., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. 2014. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: A population-based study. The Lancet), 383, 889–895.
   PubMed Web of Science ®Google Scholar
• Hughes-McCormack, L. A., Rydzewska, E., Henderson, A., MacIntyre, C., Rintoul, J. and Cooper, S.-A. 2017. Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population. BJPsych Open, Royal College of Psychiatrists, 3, 243–248.
   PubMed Web of Science ®Google Scholar
• Iacono, T., Bigby, C., Unsworth, C., Douglas, J. and Fitzpatrick, P. 2014. A systematic review of hospital experiences of people with intellectual disability. BMC Health Services Research, 14, 1–8.
   PubMed Web of Science ®Google Scholar
• Jones, M. C., McLafferty, E., Walley, R., Toland, J. and Melson, N. 2008. Inclusion in primary care for people with intellectual disabilities: Gaining the perspective of service user and supporting social care staff. Journal of Intellectual Disabilities : JOID, 12, 93–109.
   PubMedGoogle Scholar
• Kcomt, L. 2019. Profound health-care discrimination experienced by transgender people: Rapid systematic review. Social Work in Health Care, 58, 201–219.
   PubMed Web of Science ®Google Scholar
• Keith, H. E. and Keith, K. D. 2013. Intellectual disability: Ethics, dehumanization, and a new moral community. United States: John Wiley & Sons. doi: 10.1002/9781118606957.
   Google Scholar
• LeDeR Programme. 2018. Learning disablity mortality review. UK: University of Bristol.
   Google Scholar
• Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M. and Boyle, F. 2005. Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research : JIDR, 49, 296–305.
   PubMed Web of Science ®Google Scholar
• Lennox, T. N., Nadkarni, J., Moffat, P. and Robertson, C. 2003. Access to services and meeting the needs of people with disabilities. Journal of Learning Disabilities, 7, 34–50.
   Google Scholar
• Martin, D. M., Roy, A. and Wells, M. B. 1997. Health gain through health checks: Improving access to primary health care for people with intellectual disability. Journal of Intellectual Disability Research, 41, 401–408.
   PubMed Web of Science ®Google Scholar
• Mason, J. and Scior, K. 2004. “Diagnostic overshadowing” Amongst clinicians working with people with intellectual disabilities in the UK. Journal of Applied Research in Intellectual Disabilities, 17, 85–90. John Wiley & Sons, Ltd,
   Web of Science ®Google Scholar
• Mastebroek, M., Naaldenberg, J., van den Driessen Mareeuw, F. A., Lagro-Janssen, A. L. M. M. and van Schrojenstein Lantman-de Valk, H. M. J. J. 2016. Experiences of patients with intellectual disabilities and carers in GP health information exchanges: A qualitative study. Family Practice, 33, 543–550.
   PubMed Web of Science ®Google Scholar
• McMahon, M. and Hatton, C. 2021. A comparison of the prevalence of health problems among adults with and without intellectual disability: A total administrative population study. Journal of Applied Research in Intellectual Disabilities : JARID, 34, 316–325.
   PubMed Web of Science ®Google Scholar
• Noblit, G. W. and Hare, R. D. 1988. Meta-ethnography: Synthesizing qualitative studies. UK: Sage Publications.
   Google Scholar
• Northway, R. D. 2019. Improving equality of healthcare for people with learning disabilities. Nursing Times, 115, 27–31.
   Google Scholar
• Osborn, D. P. J., Horsfall, L., Hassiotis, A., Petersen, I., Walters, K. and Nazareth, I. 2012. Access to cancer screening in people with learning disabilities in the UK: Cohort study in the health improvement network, a primary care research database. PLoS One, 7, e43841.
   PubMed Web of Science ®Google Scholar
• Perry, J., Felce, D., Kerr, M., Bartley, S., Tomlinson, J. and Felce, J. 2014. Contact with primary care: The experience of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities : JARID, 27, 200–211. Blackwell Publishing Ltd,
   PubMed Web of Science ®Google Scholar
• Perry, J., Kerr, M., Felce, D., Bartley, S. and Tomlinson, J. 2010. Monitoring the public health impact of health checks for adults with a learning disability in Wales. UK: Public Health Wales.
   Google Scholar
• Robertson, J., Hatton, C., Emerson, E. and Baines, S. 2014. The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence. Research in Developmental Disabilities, 35, 2450–2462.
   PubMed Web of Science ®Google Scholar
• Rocque, R. and Leanza, Y. 2015. A systematic review of patients' experiences in communicating with primary care physicians: Intercultural encounters and a balance between vulnerability and integrity. PloS One, 10, e0139577
   PubMed Web of Science ®Google Scholar
• Rohleder, P. and Lyons, A. C. 2015. Qualitative research in clinical and health psychology. UK: Palgrave Macmillan.
   Google Scholar
• Rosano, A. and Battisti, A. 2017. Access to preventive health services of people with intellectual disability in Italy. Journal of Intellectual Disability - Diagnosis and Treatment, 5, 96–99.
   Google Scholar
• Ryan, S., Hislop, J. and Ziebland, S. 2017. Do we all agree what “good health care” looks like? Views from those who are “seldom heard” in health research, policy and service improvement. Health Expect, 20, 878–885.
   PubMed Web of Science ®Google Scholar
• Shamseer, L., Moher, D., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., Stewart, L. A., Altman, D. G., Booth, A., Chan, A. W., Chang, S., Clifford, T., Dickersin, K., Egger, M., Gøtzsche, P. C., Grimshaw, J. M., Groves, T., Helfand, M., Higgins, J., Lasserson, T., Lau, J., Lohr, K., McGowan, J., Mulrow, C., Norton, M., Page, M., Sampson, M., Schünemann, H., Simera, I., Summerskill, W., Tetzlaff, J., Trikalinos, T. A., Tovey, D., Turner, L. and Whitlock, E. 2015. Preferred reporting items for systematic review and meta-analysis protocols (prisma-p) 2015: Elaboration and explanation. BMJ (Online), 349: g7647.
   Google Scholar
• Taylor, S. 2018. Critical realism vs social constructionism & social constructivism: Application to a social housing research study. International Journal of Sciences: Basic and Applied Research, 37, 216–222. Available at:<http://www.researchgate.net/publication/323239844_Critical_Realism_vs_Social_Constructionism_Social_Constructivism_Application_to_a_Social_Housing_Research_Study> [Accessed 5 November 2020].
   Google Scholar
• Trollor, J., Srasuebkul, P., Xu, H. and Howlett, S. 2017. Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open, 7, e013489
   PubMed Web of Science ®Google Scholar
• Usher-Smith, J. A., Harte, E., Maclure, C., Martin, A., Saunders, C. L., Meads, C., Walter, F. M., Griffin, S. J. and Mant, J. 2017. Patient experience of NHS health checks: A systematic review and qualitative synthesis. BMJ Open, 7, e017169
   PubMedGoogle Scholar
• Voss Horrell, S. C., Maclean, W. E. and Conley, V. M. 2006. Patient and parent/guardian perspectives on the health care of adults with mental retardation. Mental Retardation, 44, 239–248.[239:PAGPOT]2.0.CO;2.2.0.CO;2]
   PubMedGoogle Scholar
• Walmsley, J. 2011. An investigation into the implementation of Annual Health Checks for people with intellectual disabilities. Journal of Intellectual Disabilities, 15, 157–166.
   PubMedGoogle Scholar
• Wilkinson, J., Dreyfus, D., Bowen, D. and Bokhour, B. 2013. Patient and provider views on the use of medical services by women with intellectual disabilities. Journal of Intellectual Disability Research : JIDR, 57, 1058–1067.
   PubMed Web of Science ®Google Scholar
• Wolfenberger, W. P. and Bengt, N. 1972. Normalization: The principal of normalization in human services. The National Institute on Mental Retardation. Available at: <http://trove.nla.gov.au/work/10438359?selectedversion=NBD597141> [Accessed 20 March 2019].
   Google Scholar
• Wullink, M., Veldhuijzen, W., Van Schrojenstein Lantman - De Valk, H. M., Metsemakers, J. F. and Dinant, G. J. 2009. Doctor-patient communication with people with intellectual disability - A qualitative study. BMC Family Practice, 10, 10.
   PubMed Web of Science ®Google Scholar
• Ziebland, S. and Hunt, K. 2014. Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy. Journal of Health Services Research & Policy, 19, 177–182. SAGE Publications Ltd,
   PubMed Web of Science ®Google Scholar
• Ziviani, J., Lennox, N., Allison, H., Lyons, M. and Del Mar, C. 2004. Meeting in the middle: Improving communication in primary health care consultations with people with an intellectual disability. Journal of Intellectual & Developmental Disability, 29, 211–225.
   Web of Science ®Google Scholar