Perceptions of Stigma by Parental Caregivers With Mentally Ill Family Members

Purpose: The experience of stigma is recognized as a widespread, universal phenomenon which is a major cause of personal suffering and a deterrent to obtaining health care. Vulnerable populations, such as people with mental illness or psychiatric disabilities are at risk for various forms of stigma. Caretakers can frequently identify the types of stigma experienced by their family members. Yet, often there are no services or support groups where the caregivers may verbalize their concerns and frustrations. There is a strong need for caregivers to becoming educated about strategies to advocate for their family members, and reduce or eliminate the stigma associated with mental illness. Since health care providers and social scientists believe that stigma has a negative influence on people’s lives by contributing to high levels of stress and social disadvantage, it is the responsibility of providers in the mental health care communities to work with individuals and families to reduce the stigma of mental illness. The main purposes of this study are to describe the parental perceptions of stigma experienced by their adult children with mental illness, and to determine the educational and advocacy strategies that caregivers perceived as useful. An additional secondary purpose was to evaluate an outpatient, community mental health, educational and support program for parent caregivers.

Methods: This retrospective, descriptive qualitative research study examined issues raised by the parental caregivers of adult children diagnosed with mental illness and the effectiveness of two educational programs delivered in a support group format. After obtaining informed consent from all registered participants, the caregiver group meetings held at the community mental health center were video-recorded. Data from each of the ten sessions were analyzed using Elo and Kyngas’ content analysis method. Descriptive statistics were used to compile the demographic and evaluation data. Eighteen participants were referred to the program through one of the county family service programs or the outpatient community mental health centers located in two counties in the mid-Atlantic region of the United States.

Results: The findings revealed the specific concerns about stigma experienced by the participants’ family members. The information related to the identification of stigma, and the communication and the strategies to address stigma were valued by the participants. Participant comments focused on program content they viewed as making a difference in reducing the experience of stigma. They proposed recommendations to streamline the program and identified the difficult-to-master topics. Six themes that emerged from the data were: Caregiver feelings of frustration, anger and discrimination when their family members experience stigma; Experience of stigma by association; Stigma contributing to health problems of people with mental illness; Concerns about advocacy actions being successful; Desire to establish mental health advocacy groups for education, employment and vocational training; and Need for consumer centers.

Conclusions: Participants appreciated having the educational information and a safe place to discuss stigma experiences and their personal concerns. Customized segments of the program addressing individual concerns were valued. The new knowledge related to strategies to address how to cope, communicate and handle the discrimination associated with stigma facilitated participant learning. Concerns and hesitations were voiced by caregivers about the success of advocacy actions and the on-going establishment of community-based services for persons with mental illness. The creating and sustaining of Consumer Centers within communities for socialization, peer support, relaxation and fun activities were viewed as important to the well-being of people with mental illness and their family members. Revision of the educational programs based on participant feedback is warranted. Further research is necessary on topics concentrating on the stigma of mental illness, caregiver perceptions of addressing stigma, advocacy strategies, the provision of appropriate community services, and the efficiency and cost-savings of consumer-run centers. Research on the steps to improve mental health policy, funding, research and legislation can eventually contribute to overall quality of life for people with mental illness and their family caregivers.