Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables

• Published in: Research in developmental disabilities 2013-11, Vol.34 (11), p.4103-4114
• Main Authors: Werner, Shirli, Shulman, Cory
• Format: Article
• Language: English
• Subjects: Adult; Autistic spectrum disorders; Biological and medical sciences; Caregivers - psychology; Caregiving; Carers; Child Development Disorders, Pervasive - nursing; Developmental disabilities; Developmental Disabilities - nursing; Developmentally disabled people; Family environment. Family history; Female; Humans; Intellectual Disability - nursing; Male; Medical sciences; Middle Aged; Parents - psychology; Personal Satisfaction; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Quality of Life - psychology; Self Concept; Selfesteem; Social psychiatry. Ethnopsychiatry; Social Stigma; Social Support; Stigma; Stigmatization; Subjective well-being; Subjective wellbeing; Young Adult
• ISSN: 0891-4222; 1873-3379
• DOI: 10.1016/j.ridd.2013.08.029

•Subjective wellbeing was especially low for caregivers of individuals with ASD.•Greater affiliate stigma were associated with lower subjective wellbeing.•Support to caregivers can decrease affiliate stigma and improve well-being. Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers’ internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N=176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers’ self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities.