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

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.