Elsevier

Comprehensive Psychiatry

Volume 70, October 2016, Pages 159-164
Comprehensive Psychiatry

Care burden of parents of adult children with mental illness: The role of associative stigma

https://doi.org/10.1016/j.comppsych.2016.07.010Get rights and content

Abstract

Objective

Parents of offspring with mental illness must endure endless child care burden despite their old age, and must cope with associative stigma. This study analyzed the mediator effect of associative stigma on relationships between the main stressors, psychiatric symptoms and lowered social function of offspring with mental illness, assessed by the parents, and their care burden.

Method

215 parents caring for an adult child with mental illness in Korea were surveyed (Mage = 60.68, SD = 13.58; 74.4% mothers). They were asked to assess the psychiatric symptoms and social function of their offspring, the stigma they experienced, and the objective/subjective care burdens they felt.

Results

Our findings suggest that the symptoms and function of offspring directly affect the care burden of parents, but also have an indirect effect mediated by associative stigma. Among the predictor variables, symptoms have a greater effect on the subjective/objective burden and associative stigma than social function.

Conclusions

We suggest strategies for parents to overcome associative stigma and emphasize the professional endeavor required to meet the service needs of elderly parents taking care of an adult child with mental illness.

Introduction

Social stigma toward mental illness limits the social opportunities of those afflicted, lowering self-esteem and self-efficacy, and severely hindering their recovery. Such public stigma also affects their family members, who are the primary caregivers, limiting their personal relationships and deteriorating their quality of life. Results of recent studies show that the stigma experienced by family members through their association with someone suffering from mental illness increases the care burden [1], [2] and deteriorates their physical and mental health [3], [4], [5]. Therefore, some of them choose to hide the fact that they have a relative with severe mental illness in order to avoid the stigma, and a substantial amount of energy and resources is used to keep this secret [6].

The extension of public stigma on mental illness to close family members is called ‘courtesy stigma’ or ‘associative stigma’. This means that one becomes stigmatized by being associated with a stigmatized person [7]. In previous studies, associative stigma was defined as public perception of the associate [2]. Some studies used other concepts, affiliate stigma or self-stigma, as the stigma experienced by the family. However, affiliate stigma or self-stigma refers to the extent to which associated individuals internalize the stigma [2]. To differentiate our proposed construct from affiliate stigma or self-stigma, we referred to the stigma perceived as a result of their association with someone with mental illness as associative stigma.

According to Wahl and Harman [8], 87.6% of family members experienced stigma toward mental disorders. Furthermore, 18% of family members answered that they thought it would be better for the patient to die because of the social stigma [7]. Karnieli-Miller and colleagues [9] analyzed focus group data from 14 family members to determine what kinds of stigma they experienced from social encounters and how they coped with them. Results showed that family members experienced rejection, blame, and avoidance by others. Therefore, family members would cope by choosing to either reveal or hide the patient, depending on the situations they encountered. From reviewing previous studies [6], approximately 50% of family members hide the patient in order to avoid shame. Moreover, more than 30% of family members answered that family relationships and social relationships were damaged and their self-esteem lowered as a result of having a relative with mental illness [6].

There are three major sources of stigma experienced by the family [10]. First, based on a generalized fear of individuals with mental illness, others view their home as a threatening place. Second, the theory criticizing the family for being the cause of the mental disorder becomes a source of stigma. Third, stigma comes from the presumption that the deviance of patients, which is difficult for the public to understand, will also appear in other family members. When family members experience such associative stigma, they become withdrawn, depressed, and feel guilty for the causes and courses of mental illness [3]. They have a tendency to avoid cooperation with service providers who blame the family for the cause of the mental illness. As a result, they are unable to properly cope with the patient's mental illness, leading to a worsening of the illness and a more negative social perception.

Family members, especially parents, must undergo ‘the burden of endless caregiving’ even through old age, in addition to coping with the loss of their once-healthy children. Moreover, unlike other family members, the suffering of parents does not decline over time, due to the worry of how their mentally ill adult children will survive when they are no longer able to take care of them [11].

Korea culturally has a strong bond among family members, and parents have a large influence on the daily affairs and therapeutic decisions of their children. Therefore, associative stigma may have a significant influence on the prognosis and course of their offspring's mental illness. Due to such stigma, there is a tendency to avoid contact with treatment systems and to engage in unnecessarily long-term hospitalization in order to hide the fact that they have a child with mental illness. According to data from the National Mental Health Commission in Korea [12], only 15.3% of people experiencing mental illness use mental health services, indicating that Koreans have a tendency to avoid contact with mental health systems. Moreover, the average duration of hospitalization for psychiatric patients was 176 days, and more than 80% of all hospitalizations were coerced by family. In Korea, it can be assumed that associative stigma has a significant influence on the treatment process of patients.

This study attempts to analyze the role of associative stigma in affecting the relationship between the main stressors, psychiatric symptoms and damaged social functions of offspring, assessed by parents, and their subjective/objective burden. We hypothesized that psychiatric symptoms and social functions directly affect subjective/objective burden, but also indirectly have a significant influence on subjective/objective burden mediated by associative stigma. Therefore, the greater the symptoms and lower the functions, the greater the subjective/objective burden of parents. In addition, high symptoms and low social functions reinforce associative stigma, and again, this stigma seriously aggravates subjective/objective burden.

Section snippets

Participants and procedures

The participants were 215 parents (25.6% fathers, 74.4% mothers) caring for an adult child with severe mental illness. The parents had a mean ± SD age of 60.68 ± 13.58 years. The patients were diagnosed with schizophrenia (80.9%), mood disorder (16.3%), and others (1.9%). Their mean (SD) age was 38.11 (11.08) years. Of the children with mental illness, 57.9% were male (42.1% female).

The research ethics committee (Institution Review Board: IRB) approved the survey on 22nd December, 2014. After

Associative stigma

For associative stigma experienced by parents, 7 items were chosen and used from Wahl and Harman's [8] questionnaire. The degree of social stigma perceived by parents, and the effect of the stigma on social life, self-esteem, finding a place to live, willingness to acknowledge a child's mental illness, and the marriage of other offspring were measured on a 5-point scale. Cronbach alpha was 0.86.

Care burden

The burden parents felt while taking care of a child with mental illness was measured using the

Statistical analysis

Baron and Kenny's [16] four-step approach for testing mediation effects was used to test the effect of the stigma (mediating variable: M) on the relationship of psychiatric symptoms and social functions, assessed by parents (predicting variables: P), along with the objective/subjective care burden (outcome variables: O). Baron and Kenny's four-step procedure is as follows. Step 1, the predictor variables must be significantly associated with outcome variables. Step 2, predictor variables must

Relationship between characteristics of participants and main variables

Correlation and ANOVA were used to examine the relationship between characteristics such as the parent's age and gender, their offspring's age and diagnosis, and the main variables, which are associative stigma and care burden. As a result, none showed any statistically significant relationship. Only the gender of the parent showed a significant difference in terms of the objective burden. Mothers felt more objective burden than fathers. These results indicate that stigma and subjective burden

Discussion

Since 70%–80% of individuals with mental illness are not married [12], their parents must endure the child care burden despite their old age [13], and must live with the fate of facing associative stigma. If parents decide not to take care of their mentally ill child, patients have no choice but to live in an institution. Therefore, intervention to ease the parents' care burden is essential for the patient's recovery.

This research was conducted based on the previous studies [3], [4], [17] that

Limitations and future research

This research was conducted to examine the relationship between the social stigma and care burden of parents who have primary responsibility for caring for their mentally ill adult child. Due to cultural traits in which familism is strong [24], Korean parents share the same fate as their offspring, and must also face serious social stigma toward mental illness. This study can not only be used as comparative data in countries with similar cultural backgrounds, but also contribute to finding a

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