Kiedy stygmat dotyka domu: Badanie dotyczące wstydu pośredniego u opiekunów osób z epilepsją
When stigma hits home: A mixed methods study of affiliate stigma among epilepsy care partners
W skrócie
Badanie pokazuje, że opiekunowie osób z epilepsją doświadczają wstydu pośredniego - czyli przejmują negatywne odczucia i spojrzenia społeczeństwa skierowane na swoich bliskich. Wstyd ten powoduje u opiekunów większe obciążenie, problemy w rodzinie oraz zaburzenia emocjonalne, a osoby doświadczające tego wstydu unikają kontaktów społecznych i czują się samotne. Badacze apelują o stworzenie specjalnych programów wsparcia dla opiekunów, które będą pomagać im radzić sobie z emocjonalnym, poznawczym i behawioralnym aspektami tego wstydu pośredniego.
Oryginalny abstract (angielski)
INTRODUCTION: Affiliate stigma occurs when care partners internalize stigma directed towards their loved ones. Care partners of people with epilepsy (PWE), defined as individuals who provide support, are at risk for distress, family dysfunction, and burden; yet, the multidimensional impact of affiliate stigma on family and emotional well-being remains understudied. This mixed-methods study examined associations among care partner burden, family functioning, and affiliate stigma, and explored care partners' experiences and support needs. MATERIALS AND METHODS: Forty-eight care partners of PWE (mean age = 47.98 years, 77.1% female) completed affiliate stigma (Mak Affiliate Stigma Scale; affective, cognitive, behavioral domains), burden (Zarit Burden Interview), and family functioning (Family Assessment Device) measures. Multivariate regressions examined interrelationships, adjusting for care recipient age (pediatric vs. adult). A purposeful subsample (n = 7) completed qualitative interviews, analyzed using theory-informed deductive thematic analysis. RESULTS: Higher affiliate stigma was associated with greater burden and poorer family role functioning. When examined across the scale's subdomains, affective stigma uniquely predicted burden, whereas cognitive and behavioral stigma predicted family role functioning. Qualitative findings revealed that enacted and felt stigma contributed to distress (e.g., shame, anger), hypervigilance, and anticipation of worst-case scenarios, as well as adaptive (e.g., self-care, advocacy) and maladaptive (e.g., social avoidance, emotional withdrawal) coping. Stigma-related experiences strained relationships, engendered isolation, and contributed to unmet support needs. CONCLUSIONS: Affiliate stigma exerts a multidimensional impact on care partners' well-being and family functioning, reinforcing the need for care partner-focused interventions addressing affective, cognitive, and behavioral aspects of affiliate stigma in epilepsy care.