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

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.