Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Nov 23;17(22):8690.
doi: 10.3390/ijerph17228690.

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

María Inmaculada Fernández-Ávalos  1 , María Nieves Pérez-Marfil  2   3 , Rosario Ferrer-Cascales  1 , Francisco Cruz-Quintana  2   3 , Violeta Clement-Carbonell  1 , Manuel Fernández-Alcántara  1   3
Affiliations

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

María Inmaculada Fernández-Ávalos et al. Int J Environ Res Public Health. .

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.

Keywords: caregivers; chronic illness; intellectual disability; parents; quality life; welfare; well-being.

PubMed Disclaimer

Conflict of interest statement

The authors declare that there is no conflict of interest.

Figures

Figure 1
Figure 1
Quotations in Theme 4: Concerns about the future.
See this image and copyright information in PMC

References

    1. Broberg M. Expectations and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden. Child Care Health Dev. 2011;37:410–417. doi: 10.1111/j.1365-2214.2010.01198.x. - DOI - PubMed
    1. Brown J. Recurrent grief in mothering a child with an intellectual disability to adulthood: Grieving is the healing. Child Fam. Soc. Work. 2013;21:113–122. doi: 10.1111/cfs.12116. - DOI
    1. Fernández-Alcántara M., García-Caro M.P., Laynez-Rubio C., Pérez-Marfil M.N., Martí-García C., Benítez-Feliponi Á., Berrocal-Castellano M., Cruz-Quintana F. Feelings of loss in parents of children with infantile cerebral palsy. Disabil. Health J. 2015;8:93–101. doi: 10.1016/j.dhjo.2014.06.003. - DOI - PubMed
    1. Van der Steen S.L., Riedijk S.R., Verhagen-Visser J., Govaerts L.C.P., Srebniak M.I., Van Opstal D., Joosten M., Knapen M.F.C.M., Tibben A., Diderich K.E.M., et al. The Psychological Impact of Prenatal Diagnosis and Disclosure of Susceptibility Loci: First Impressions of Parents´ experiences. J. Genet. Couns. 2016;25:1227–1234. doi: 10.1007/s10897-016-9960-y. - DOI - PMC - PubMed
    1. Schalock R.L., Borthwick-Duffy S.A., Bradley V.J., Buntinx W.H.E., Coulter D.L., Craig E.M., Gómez S.C., Lachapelle Y., Luckasson R., Reeve A., et al. Intellectual Disability: Definition, Classification, and Systems of Supports. 11th ed. American Association on Intellectual and Developmental Disabilities; Washington, DC, USA: 2010.

Publication types