Stigma among Iranian family caregivers of patients with Alzheimer's disease: A hermeneutic study

Abstract

Although there is evidence of stigmatization of patients with Alzheimer's disease, few studies have evaluated stigma among family caregivers. This study was aimed at understanding the experiences of family caregivers of persons with Alzheimer's disease within Iran. We conducted a qualitative study using hermeneutic phenomenology. Semistructured in‐depth interviews with 10 Iranian family caregivers of persons with Alzheimer's were audiotaped and transcribed. The transcriptions were then analyzed using Van Manen's method. Family stigma emerged as one of the most important themes in this study. It consisted of two subthemes of “feeling of shame due to the unusual behaviors and speech of the patients” and “fear of judgments made by others.” An understanding of the experience of family stigma may lead to the development of supportive strategies to manage this problem among the caregivers. Educating families of patients about the disease plays a critical role in facilitating the process of caregiving. In addition, promoting public awareness about Alzheimer's disease can diminish stigma and prejudice toward patients and their caregivers. Educating caregivers on stigma management may also be an important factor in alleviating their stress.

Family Stigma Associated With Epilepsy: A Qualitative Study

“…Li et al, reported that 89% of people with epilepsy and 76% of their families in China have been stigmatized. 23 Navab et al, also, regarding the stigma among caregivers of patients with Alzheimer's disease writes, caregivers of the patient were stigmatized, she reported because of feeling of shame due to the unusual behaviors and speech they prefer less attendance in communities and they were isolated, 14 which is consistent with the results of our work. Bogart et al, suggested all family members of people with AIDS were stigmatized, 100% of their mothers and 88% of fathers and 52% of children.…”

“…13 Over 70 million people live in Iran and most of them are Muslim. About feature of the culture that can be mentioned altruistic and strong family ties are very important, 14 so a commitment to sensitive care for an ill family member is valuable especially if the ill member is a child. Iranian people are quite affectionate and have a close relationship with their child; in addition, Islam also often mentions the importance of parent-child responsibilities, so parents are committed to provide all aspects of care in any situation for their child, especially when the child is sick.…”

“…Consequently, all aspects of a family’s social life and health care providers 16 could be negatively affected by stigma. 14,16 Forsgren and colleagues (2013) compared experience of stigma by Iranian and Sweden person with epilepsy and suggested the Iranian patients reported greater internalized stigma than the Swedish patients, but no study about parents’ experiences of child with epilepsy was found. 17 …”

The Meanings Caregivers Ascribe to Dementia-Related Changes in Care Recipients: A Meta-Ethnography

“…Daly et al (2013) identified dementia care as being situated within a social milieu, and the current review found stigma to be an important caregiver concern within this social matrix. In some articles, stigma was addressed overtly (Liu, Hinton, Tran, Hinton, & Barker, 2008;Navab, Negarandeh, Peyrovi, & Navab, 2013;Vickrey et al, 2007;Werner, Goldstein, & Buchbinder, 2010), but in others, the stigma theme was more implicit (Adams, 2006). Care recipients were stigmatized by both the community and their families as their cognitive and physical abilities deteriorated.…”

Validity and Reliability of the Persian Version of the Revised Caregiving Appraisal Scale in Iranian Family Caregivers of Older Adults with Dementia

“…Intercultural studies show differences between caregivers from eastern and western countries, since, in Asian countries, family caregivers rely mainly on family resources and support, whereas western caregivers receive formal outside support. Furthermore, the dominant culture of a society has a multifaceted effect on its caregivers' experiences of care and their manner of appraising their daily activities, personal and social resources, the meaning of caregiving, and their family member's disease symptoms (9)(10)(11).…”