IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v17y2020i22p8690-d449600.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/17/22/8690/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/17/22/8690/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. 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.
    2. 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.
    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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Immacolata Dall’Oglio & Giulia Gasperini & Claudia Carlin & Valentina Biagioli & Orsola Gawronski & Giuseppina Spitaletta & Teresa Grimaldi Capitello & Michele Salata & Valentina Vanzi & Gennaro Rocco, 2021. "Self-Care in Pediatric Patients with Chronic Conditions: A Systematic Review of Theoretical Models," IJERPH, MDPI, vol. 18(7), pages 1-24, March.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Julia Jansen-van Vuuren & Rosemary Lysaght & Beata Batorowicz & Solomon Dawud & Heather Michelle Aldersey, 2021. "Family Quality of Life and Support: Perceptions of Family Members of Children with Disabilities in Ethiopia," Disabilities, MDPI, vol. 1(3), pages 1-24, August.
    2. Cristian Bortes & Mattias Strandh & Karina Nilsson, 2020. "Parental Illness and Young People’s Education," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 13(6), pages 2069-2091, December.
    3. Hareth Al-Janabi & Nikki McCaffrey & Julie Ratcliffe, 2013. "Carer Preferences in Economic Evaluation and Healthcare Decision Making," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 6(4), pages 235-239, December.
    4. Christopher Wai Hung Yau & Erik Lenguerrand & Steve Morris & Tim Draycott & Elena Pizzo, 2021. "A model-based cost-utility analysis of multi-professional simulation training in obstetric emergencies," PLOS ONE, Public Library of Science, vol. 16(3), pages 1-18, March.
    5. Hareth Al‐Janabi & Job Van Exel & Werner Brouwer & Caroline Trotter & Linda Glennie & Laurie Hannigan & Joanna Coast, 2016. "Measuring Health Spillovers for Economic Evaluation: A Case Study in Meningitis," Health Economics, John Wiley & Sons, Ltd., vol. 25(12), pages 1529-1544, December.
    6. Arnstein Aassve & Francesca Luppi & Letizia Mencarini, 2018. "Unlocking the black box of life satisfaction surrounding childbearing," Working Papers 120, "Carlo F. Dondena" Centre for Research on Social Dynamics (DONDENA), Università Commerciale Luigi Bocconi.
    7. Alba Pérez-González & Josep Vilajoana-Celaya & Joan Guàrdia-Olmos, 2021. "Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief," IJERPH, MDPI, vol. 18(16), pages 1-15, August.
    8. Henry, Edward & Cullinan, John, 2021. "Mental health spillovers from serious family illness: Doubly robust estimation using EQ-5D-5L population normative data," Social Science & Medicine, Elsevier, vol. 279(C).
    9. Arnstein Aassve & Francesca Luppi & Letizia Mencarini, 2021. "A first glance into the black box of life satisfaction surrounding childbearing," Journal of Population Research, Springer, vol. 38(3), pages 307-338, September.
    10. Tekola, Bethlehem & Kinfe, Mersha & Girma, Fikirte & Hanlon, Charlotte & Hoekstra, Rosa A., 2020. "Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study," Social Science & Medicine, Elsevier, vol. 256(C).
    11. Hareth Al-Janabi & Andrea Manca & Joanna Coast, 2017. "Predicting carer health effects for use in economic evaluation," PLOS ONE, Public Library of Science, vol. 12(9), pages 1-18, September.
    12. Oladele Atoyebi & Janice J. Eng & François Routhier & Marie-Louise Bird & W. Ben Mortenson, 2022. "A systematic review of systematic reviews of needs of family caregivers of older adults with dementia," European Journal of Ageing, Springer, vol. 19(3), pages 381-396, September.
    13. Álvaro León-Campos & Silvia García-Mayor & Celia Martí-García & Juan Carlos Morilla-Herrera & José Miguel Morales-Asencio & Inmaculada Lupiáñez-Pérez & Bibiana Pérez-Ardanaz & Magdalena Cuevas Fernand, 2023. "Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol," IJERPH, MDPI, vol. 20(6), pages 1-10, March.
    14. Monika Novak-Pavlic & Peter Rosenbaum & Briano Di Rezze, 2023. "Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities," IJERPH, MDPI, vol. 20(21), pages 1-11, October.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:17:y:2020:i:22:p:8690-:d:449600. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.