Depression, Anxiety of Death, and Fear of Death in Family Caregivers of People With Prader-Willi Syndrome: A Mixed Study.

Abstract

Background: Family caregivers of individuals with Prader-Willi syndrome face significant challenges that affect their social, economic, personal, and emotional well-being. The mental health of these caregivers remains largely unexplored, particularly regarding their own premature death.

Objective: This study seeks to explicate how caregivers manage their responsibility of providing continuous specialized care for individuals with Prader-Willi syndrome. A mixed research approach was used to uncover depression, death anxiety, and anticipated fear of own death among caregivers of patients with SPW who access a foundation in the state of Hidalgo, Mexico.

Method: A mixed-methods approach was employed, using a sequential explanatory design. The quantitative sample included 15 volunteer participants between 35 and 66 years old, belonging to a foundation in Hidalgo, Mexico. Research instruments had an internal consistency of r = >0.70. Qualitative data was gathered through a focus group, using interpretive description to explore caregivers' emotional experiences.

Results: Statistical analyses, including Gamma and Kendall Tau tests, revealed significant correlations (P = 0.01) between caregivers' anticipated fear of death and the levels of death anxiety and depression. The qualitative findings yielded 3 principal themes: uncertainty about future self-sufficiency, fear of the future if they pass away, and the crucial role of community support.

Discussion and conclusion: This methodological mixed study reveals a correlation between anxiety about the future, fear of death, and the emotional need for support. Continual emotional support and counselling are crucial for caregivers responsible for PWS patients' care.