Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: a qualitative study

Abstract

Aim and Objective: This study aimed to explore how caregivers of persons with Down syndrome (DS) believe caring had an impact on their own lives. A secondary objective was to understand their experience of seeking educational, social, and health care services for the persons with DS.

Methods: This qualitative exploratory study was conducted with 21 caregivers of persons with DS in Kuwait.

Results: Caregivers struggled to accept the diagnosis initially that led them to search for answers to many of their concerns about raising a person with DS. For the caregivers, who mostly comprised of mothers, dealing with health conditions that persons with DS suffered from was initially difficult. Caring for these individuals led to heavy impact upon their caregivers’ own lives who took extraordinary efforts to cope with the burden. Seeking quality education for the persons with DS and participation in social activities was also challenging, and the caregivers believed that better services, facilities, and benefits for the families of persons with DS may help them better cope with the socioeconomic and psychological burden.

Conclusions: Improving the availability of specialized services, the delivery of guidance and counselling, and social integration may help overcome challenges of raising a person with Down Syndrome.

Keywords:

• individuals with Down syndrome
• caregivers’ perceptions
• experience
• Kuwait
• qualitative study

Acknowledgements

We would like to thank all the caregivers who participated in the study and contributed to such a valuable research topic. This research could not be possible without the assistance of “Kuwait Down Syndrome Society”, “Nasser Abdulrahman AlMejel Center for Down Syndrome Children” and “Abeer Two Center”. Their contributions are sincerely and gratefully acknowledged.

Disclosure statement

No potential conflict of interest was reported by the authors.