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
. 2021 Jun 30:8:23333936211028170.
doi: 10.1177/23333936211028170. eCollection 2021 Jan-Dec.

Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs

Liesbeth Geuze  1   2 , Anne Goossensen  1
Affiliations

Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs

Liesbeth Geuze et al. Glob Qual Nurs Res. .

Abstract

The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents' concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents' personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents' vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.

Keywords: The Netherlands; UN convention on the rights of persons with disabilities; blog; child with profound intellectual and multiple disabilities; humanization of healthcare policy; parents’ experiences.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Andrews M., Squire C., Tamboukou M. (2013). Doing narrative research. SAGE Publications.
    1. Axelsson A. K., Wilder J. (2014). Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. International Journal of Developmental Disabilities, 60(1), 13–25. 10.1179/2047387712Y.0000000008 - DOI - PubMed
    1. Baart A. (2004). Een theorie van de presentie (A theory of presence) (3rd ed.). Boom uitgevers Amsterdam.
    1. Benson P. L., Scales P. C. (2009). The definition and preliminary measurement of thriving in adolescence. The Journal of Positive Psychology, 4(1), 85–104. 10.1080/17439760802399240 - DOI
    1. Boelsma F., Caubo-Damen I., Schippers A., Dane M., Abma T. A. (2017). Rethinking FQoL: The dynamic interplay between individual and family quality of life. Journal of Policy and Practice in Intellectual Disabilities, 14(1), 31–38. 10.1111/jppi.12224 - DOI

LinkOut - more resources