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Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

Author

Listed:
  • María Inmaculada Fernández-Ávalos

    (Department of Health Psychology, University of Alicante, 03690 Alicante, Spain)

  • María Nieves Pérez-Marfil

    (Mind, Brain and Behavior Research Center (CIMCYC), University of Granada, 18071 Granada, Spain
    End-of-Life Research Network (EOL), 18071 Granada, Spain)

  • Rosario Ferrer-Cascales

    (Department of Health Psychology, University of Alicante, 03690 Alicante, Spain)

  • Francisco Cruz-Quintana

    (Mind, Brain and Behavior Research Center (CIMCYC), University of Granada, 18071 Granada, Spain
    End-of-Life Research Network (EOL), 18071 Granada, Spain)

  • Violeta Clement-Carbonell

    (Department of Health Psychology, University of Alicante, 03690 Alicante, Spain)

  • Manuel Fernández-Alcántara

    (Department of Health Psychology, University of Alicante, 03690 Alicante, Spain
    End-of-Life Research Network (EOL), 18071 Granada, Spain)

Abstract

Background: Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents’ quality of life in several dimensions. However, fewer have assessed its impact years after the initial diagnosis. The objective of this work was to carry out an in-depth analysis of the current quality of life and concerns of both mothers and fathers of adults diagnosed with ID, having as a reference the moment of the diagnosis. Methods: 16 parents of adult children with ID were evaluated using a semi-structured interview format. A thematic qualitative analysis was carried out by employing ATLAS.ti software. Results: The results suggested that both the emotional and physical well-being of parents, as well as their interpersonal relationships, had declined. In addition, the multiple life changes that had occurred over the time considered in this study, as well as day-to-day worries, had prevented improvements in their quality of life. Conclusions: Several dimensions of the parents’ quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care.

Suggested Citation

  • María Inmaculada Fernández-Ávalos & María Nieves Pérez-Marfil & Rosario Ferrer-Cascales & Francisco Cruz-Quintana & Violeta Clement-Carbonell & Manuel Fernández-Alcántara, 2020. "Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study," IJERPH, MDPI, vol. 17(22), pages 1-19, November.
    • Handle: RePEc:gam:jijerp:v:17:y:2020:i:22:p:8690-:d:449600
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    References listed on IDEAS

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    1. Eve Wittenberg & Lisa Prosser, 2013. "Disutility of Illness for Caregivers and Families: A Systematic Review of the Literature," PharmacoEconomics, Springer, vol. 31(6), pages 489-500, June.
    2. Brehaut, J.C. & Garner, R.E. & Miller, A.R. & Lach, L.M. & Klassen, A.F. & Rosenbaum, P.L. & Kohen, D.E., 2011. "Changes over time in the health of caregivers of children with health problems: Growth-curve findings from a 10-year Canadian population-based study," American Journal of Public Health, American Public Health Association, vol. 101(12), pages 2308-2316.
    3. Mabel Oti-Boadi, 2017. "Exploring the Lived Experiences of Mothers of Children With Intellectual Disability in Ghana," SAGE Open, , vol. 7(4), pages 21582440177, December.
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