708
Views
0
CrossRef citations to date
0
Altmetric
Research Articles

Vulnerable but stronger together: An interpretative phenomenological analysis of the experiences of mothers of young adults with profound intellectual and multiple disabilities during the COVID-19 pandemic

ORCID Icon, & ORCID Icon

References

  • Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2021). How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families? Journal of Autism and Developmental Disorders, 51(5), 1772–1780. https://doi.org/10.1007/s10803-020-04577-2
  • Boeije, H., van Schelven, F., & Verkaik, R. (2021). Gevolgen van coronamaatregelen voor naasten van mensen met een verstandelijke beperking. Netherlands Institute for Health Services Research.
  • Courtenay, K., & Perera, B. (2020). COVID-19 and people with intellectual disability: Impacts of a pandemic. Irish Journal of Psychological Medicine, 37(3), 231–236. https://doi.org/10.1017/ipm.2020.45
  • Doody, C., Markey, K., & Doody, O. (2013). The experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Journal of Clinical Nursing, 22(7-8), 1112–1123. http://doi.org/10.1111/jocn.12020
  • Doody, O., & Keenan, P. M. (2021). The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: A scoping review. Annuals of Medicine, 53(1), 786–804. https://doi.org/10.1080/07853890.2021.1922743
  • Doyle, L. (2021). All in this together?’ A commentary on the impact of COVID-19 on disability day services in Ireland. Disability & Society, 36(9), 1538–1542. https://doi.org/10.1080/09687599.2021.1935215
  • Embregts, P., Heerkens, L., Frielink, N., Giesbers, S., Vromans, L., & Jahoda, A. (2021). Experiences of mothers caring for a child with an intellectual disability during the COVID-19 pandemic in The Netherlands. Journal of Intellectual Disability Research, 65(8), 760–771. https://doi.org/10.1111/jir.12859
  • European Commission, Joint Research Centre. (2021). Response Measures Database (RMD). European Commission, Joint Research Centre (JRC) [Dataset] PID: http://data.europa.eu/89h/b649cb36-e63d-41c9-a57c-6d6d06dbae3c
  • Geuze, L., & Goossensen, A. (2021). Exploring the experiences of Dutch parents caring for children with profound intellectual and multiple disabilities: A thematic analysis of their blogs. Global Qualitative Nursing Research, 8, 1–11. https://doi.org/10.1177/23333936211028170
  • Gleason, J., Ross, W., Fossi, A., Blonsky, H., Tobias, J., & Stephens, M. (2021). The devastating impact of Covid-19 on individuals with intellectual disabilities in the United States. NEJM Catalyst Innovations in Care Delivery, 2(2), https://doi.org/10.1056/CAT.21.0051
  • Hastings, R. (2016). Do children with intellectual and developmental disabilities have a negative impact on other family members? The case for rejecting a negative narrative. International Review of Research in Developmental Disabilities, 50, 165–194. https://doi.org/10.1016/bs.irrdd.2016.05.002
  • Kim, M. A., Yi, J., Jung, S. M., Hwang, S., & Sung, J. (2021). A qualitative study on parents’ concerns about adult children with intellectual disabilities amid the COVID-19 pandemic in South Korea. Journal of Applied Research in Intellectual Disabilities, 34(4), 1145–1155. https://doi.org/10.1111/jar.12875
  • Kruithof, K., Olsman, E., Nieuwenhuijse, A., & Willems, D. (2021). I hope i’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities. Journal of Intellectual & Developmental Disability, 47(2), 1–11. https://doi.org/10.3109/13668250.2021.1920377.
  • Kruithof, K., Willems, D., van Etten-Jamaludin, F., & Olsman, E. (2020). Parents’ knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis. Journal of Applied Research in Intellectual Disabilities, 33(6), 1141–1150. https://doi.org/10.1111/jar.12740
  • Luijkx, J., Van der Putten, A., & Vlaskamp, C. (2017). Time use of parents raising children with severe or profound intellectual and multiple disabilities. Child: Care, Health and Development, 43(4), 518–526. https://doi.org/10.1111/cch.12446
  • Neece, C., McIntyre, L. L., & Fenning, R. (2020). Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 64(10), 739–749. https://doi.org/10.1111/jir.12769
  • Patel, V., Perez-Olivas, G., Kroese, B. S., Rogers, G., Rose, J., Murphy, G., Cooper, V., Langdon, P. E., Hiles, S., & Clifford, C. (2021). The experiences of carers of adults with intellectual disabilities during the first COVID-19 lockdown period. Journal of Policy and Practice in Intellectual Disabilities, 18(4), 252–262. https://doi.org/10.1111/jppi.12382.
  • Paulauskaite, L., Farris, O., Spencer, H. M., Group, E.-I., & Hassiotis, A. (2021). My son can’t socially distance or wear a mask: How families of preschool children with severe developmental delays and challenging behavior experienced the COVID-19 pandemic. Journal of Mental Health Research in Intellectual Disabilities, 14(2), 225–236. https://doi.org/10.1080/19315864.2021.1874578
  • Pietkiewicz, I., & Smith, J. A. (2014). A practical guide to using interpretative phenomenological analysis in qualitative research psychology. Psychological Journal, 20(1), 7–14.
  • Rogers, G., Perez-Olivas, G., Stenfert Kroese, B., Patel, V., Murphy, G., Rose, J., Cooper, V., Langdon, P. E., Hiles, S., Clifford, C., & Willner, P. (2021). The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period. Journal of Applied Research in Intellectual Disabilities, 34(6), 1421–1430. https://doi.org/10.1111/jar.12884.
  • Ryan, A., Taggart, L., Truesdale-Kennedy, M., & Slevin, E. (2014). Issues in caregiving for older people with intellectual disabilities and their ageing family carers: A review and commentary. International Journal of Older People Nursing, 9(3), 217–226. http://doi.org/10.1111/opn.2014.9.issue-3
  • Seligman, M., & Darling, R. B. (2017). Ordinary families, special children: A systems approach to childhood disability. Guilford Publications.
  • Silverman, A. (2020). People with intellectual disabilities may be denied lifesaving care under these plans as coronavirus spreads [Press release]. https://www.propublica.org/article/people-with-intellectual-disabilities-may-be-denied-lifesaving-care-under-these-plans-as-coronavirus-spreads
  • Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method & research. Sage.
  • Smith, J. A., & Osborn, M. (2015). Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain. Britsh Journal of Pain, 9(1), 41–42. https://doi.org/10.1177/2049463714541642
  • Smith, J. A., & Shinebourne, P. (2012). Interpretative phenomenological analysis. American Psychological Association.
  • ten Brug, A., Luijkx, J., & Brander, A. (2021). Quarantine in a house of cards. The impact of The COVID-19 pandemic on the quality of life of relatives of people with major care needs. http://doi.org/10.21203/rs.3.rs-158520/v1
  • van Timmeren, E. A., van der Schans, C. P., van der Putten, A. A. J., Krijnen, W. P., Steenbergen, H. A., van Schrojenstein Lantman-de Valk, H. M. J., & Waninge, A. (2017). Physical health issues in adults with severe or profound intellectual and motor disabilities: A systematic review of cross-sectional studies. Journal of Intellectual Disability Research, 61(1), 30–49. https://doi.org/10.1111/jir.12296
  • Vereijken, F. R., Giesbers, S. A. H., Jahoda, A., & Embregts, P. J. C. M. (2021). Homeward bound: Exploring the motives of mothers who brought their offspring with intellectual disabilities home from residential settings during the COVID-19 pandemic. Journal of Applied Research in Intellectual Disabilities, 35(1), 150–159. https://doi.org/10.1111/jar.12930
  • Vugteveen, J., Putten, A. A. J., & Vlaskamp, C. (2014). Inventarisatieonderzoek personen met ernstige meervoudige beperkingen: prevalentie en karakteristieken. Stichting Kinderstudies & auteurs.
  • Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523–1533. https://doi.org/10.1111/jar.12811