Exploring the Effect of Stigma on the Family of Someone with a Mental Health Illness and How it Impacts on Relationships
Introduction
Mental illness is one of the burdens for some families in the society (Arditti, 2015, p.33). The well-being of people with mental illness (PWMI) and their family members can be improved when the symptoms are identified and managed appropriately and promptly. The management of factors that elevate the effects of the condition can also be used to enhance the well-being of patients and their family. However, stigma makes it difficult to manage mental illness due to its adverse impacts on patients and their families. Corrigan (2016, p. 209) argues that stigma increases the challenge of caring for mentally ill patients. The purpose of this project is to explore the effects of stigma on the family of PWMI. The study also explores how stigma affects relationships. The study will provide insights that are useful in formulating anti-stigma campaigns and improve the management of mental illnesses and the quality of life of patients and their relatives.
This study is primarily a literature review of the effects of stigma on mentally ill patients’ family members and its impacts on relationships. It is composed of the contextual material section, the actual review of previous studies, comparing and contrasting for the studies, and the conclusion. The contextual material section presents statistical data, major theoretical perspectives, legislation and policies underpinning mental illness, and issues oppression associated with stigma affecting families of the mental ill. The literature review section, which is the largest, contains summaries of the research articles of five previous studies and the themes they present. The study uses five peer-reviewed journal articles which were sourced using Kingston University’s iCat. Databases like Ovid, SCOPUS, Google scholar were used by the author using keywords like stigma, caregiver, family discrimination, isolation, mental illness. Since there is no much research on stigma experienced by family members published after 2009, the studies inclusion criteria involved mainly American peer-reviewed articles. The discussion section compares and contrasts methodologies and findings of the five studies. It also provides a summary of the key themes evident in them. The conclusion summarizes findings of the literature review and points out the gaps in previous studies. It also provides suggestions for future research.
This dissertation is motivated by the writer’s placement experience in a mental health housing project. During the placement period, the writer supported a service user with a dual diagnosis of borderline personality disorder (BDP) and substance abuse. Golightley and Goemans (2017, p. 285) describe a dual diagnosis as a spectrum of disorders includes a mental disorder. It is normally used to refer to a mental illness and problematic substance abuse and addiction. During the placement session, the service user disclosed that she experienced stigma and discrimination due to her mental illness. She expressed concerns that her immediate family members and children were ashamed of her and stigmatized in public. The service user also mentioned that mental health professionals labelled and stigmatized her because of the mental illness she had. Reflecting on this experience, the writer was compelled to explore how stigma affected the lives of the members of PWMI.
Contextual Material
Section 1 (2) of the Mental health Act 1983 describes mental illness as any condition that causes abnormal functioning or disability of the mind. This definition includes even depression and psychological distress as mental health problems. Therefore, mental illness affects a large number of the UK populations since the majority of people have experienced depression or psychological distress. One in every four people experiences a mental illness each year (Time to Change, 2015). Mental Health Act 1983 is a piece of legislation in the UK that provides the definitions of mental disorders and the rights of people regarding the assessment and treatment of mental illness in the hospital and community settings.
McNally (2011) argues that the distinction between mental illness and mental distress will never be clear. The definition of mental illness will always change based on shifts in cultural, political, and economic values. McNally (2011, p. 212) generally defines mental illness as the dysfunction of psychological and biological processes that produce suffering and functional impairment in everyday life. Mental illness compromises the thoughts, perceptions, emotions, or judgments of an individual (p.52). Mental illnesses affect the functionality of patients to the extent of needing the assistance of other as their independence is compromised significantly.
The attitude of people towards mental health problems has improved over the years, thereby, making it easier to manage their symptoms. Despite the improvements, a significant number of patients and their family members have been stigmatized by the society. Stigma refers to the negative stereotypes of PWMI. The term stigma has Greek origins. It was used by Greeks to represent something that violates the moral principles of the society (Goffman, 2009, p.1). According to Goffman (2009, p. 1), marks of stigma were made public so that everyone could identify immoral people. In most cases, signs were used to identify slaves, criminals, and traitors as blemish individuals. The bearers of the signs were avoided at all cost especially in public places. Hinshaw (2009) also concurs, indicating that stigma was historically used to brand individuals of castigated groups to give them a visible mark of reproach. This aspect of stigma is evident to this day across the world.
38% of PWMI have reported that they have been treated negatively due to stigma (Time to Change, 2015). At least 50% of these people have experienced problems with their relationships. 20% of them have lost their jobs due to stigma (Time to Change, 2015). About half of mentally ill employees are uncomfortable to talk about their mental conditions with their employees due to the fear of losing their jobs. These statistics provide just a portion of what patients and family members experience as a result of stigma. Social movements have been established to campaign against stigmatization in the UK. Time to Change is a social movement with the objective of transforming the attitudes of people towards PWMI to improve the management of symptoms. This movement has made significant progress since its establishment but anti-stigma campaigns still have a long way to go.
Members of the community usually distance themselves from PWMI. Jones (2002, p. 249) further explains that the mentally ill are regarded as lesser humans. Jones (2002) describes the family as a causal agent. The family systems theory also holds that the family is the sources of the dysfunctional factors that lead to mental illness of one member (Mark, 2013). Therefore, Jones (2002, p. 248) argues that the explanations of mental illness along with other aspects such as stigma are not complete without mentioning the relationship between the family and mental illness. Family members are also recipients of stigma from the community. This type of stigma is usually referred to as stigma by association. Social definitions of mental illnesses shape the perceptions of members of the community of the condition and how they stigmatize family members of mentally ill individuals.
Review of Research
This section contains two main elements, which include themes from and summaries of the articles.
Themes
Forms of Stigma
The identification of various forms of stigma enhances the understanding of the experiences of family members of PWMI. One of the common forms of stigma is isolation. The willingness to live or be physically beside mentally ill individuals and even their relatives is low. Some people think that mental illness is contagious (Van der Sanden et al., 2015, p. 404). Therefore, being close to patients or their relatives may transmit the condition to another person. However, such beliefs are far from the truth since there is no agent that transmits mental illness from one individual to another. Social isolation goes hand in hand with the belief that mental illness is contagious. Social isolation is worse since it makes it difficult for family members to access crucial services in the society. It instils the feeling of being different from the rest of the community members. According to the study by Van der Sanden et al. (2015, p. 404), family members of PWMI have fewer social contacts and friends. Karnieli-Miller et al. (2013, p. 259) also found that close relatives of mentally ill patients are usually avoided by members of the public due to societal beliefs associated with mental illnesses. This phenomenon limits the social, instrumental and emotional support family members get from the community. Therefore, family members find it difficult to live in the society when they have one of them with a mental illness.
Another form of stigma is being labelled incompetent. This incompetence is viewed as the cause of the mental illness. Family members are, therefore, blamed for the mental health problem affecting one of them. Goffman (1990, p. 1) also explains that the society considers persons related to mentally ill patients as blemish. The family systems theory explains why family members of mentally ill patients are blamed for their mental condition. Mark (2013, p. 20) explains that schizophrenia is a manifestation of an issue in the family and that the patient is the one displaying the family problem. The blame game indicates the failure of the community members to understand the factors that cause mental illness. According to the findings of Van der Sanden et al. (2014, p. 712), family members of patients are not taken seriously when seeking help due to the belief that their incompetence is what caused the mental condition. The family members are left on their own to care for their mentally ill patient. Therefore, Mark (2013, p. 53) found that they lack essential resources for managing the symptom of the mental illness.
Family members may be considered different and inferior in the society (van der Sanden et al., 2015, p.404). Therefore, they are considered unfit for various roles and positions at the societal level as well as in their places of work. This instils a low self-esteem and confidence in oneself. As a result, the feeling of helplessness and hopelessness comes in. The family of mentally ill patients is usually associated with bad things, problems, or undervalued things (Karnieli-Miller et al, 2013, p. 257). It is usually demoralizing for people to know that the community does not believe in them and that they can produce something good. This belief coupled with being labelled incompetent are the reasons that community members and workmates give to deny family members of mentally ill patients positions of authority and influence.
Effects of Stigma on Family Members
One of the adverse impacts of stigma on the family of mentally ill patients is broken relationships. A participant in the study conducted by van der Sanden et al. (2015) narrates the friendship between her daughter and another girl. Their five-year friendship ended after the daughter’s become psychotic. Relationships are a social factor that is essential to the well-being of a person regardless of their health, economic, or social status. Karnieli-Miller et al. (2013) also found that living with mentally ill patients results in losing friends. The social contacts of family members reduce and their social networks become smaller. These experiences result in the isolation of the family of mentally ill patients.
Most of the family members become uncomfortable to talk about the mental illness affecting one of them or any other subject that associate with the patient (Shefer et al., 2015, p.539). Van der Sanden et al. (2015) found such family members can go to the extent of reducing social contacts to avoid any talk about their mentally ill patients. Such behaviours may result from the observation of the reactions of the community towards their patients. Family members feel that it is not appropriate to talk about their mentally ill patients because they may not be taken seriously. Furthermore, it is through the talks that community members develop damaging stories about the family of PWMI. Shefer et al. (2015, p. 539) report that some people believe that disclosing the information about their mentally ill patient may affect the family’s reputation adversely. Also, families feel that there is no need to talk about their experiences as there is no hope that the community will help them after hearing their stories. Families may also hide their mentally ill members from the public to avoid any conversations associated with the patient or the condition (Shefer et al., 2013, p. 540). These experiences demonstrate how bad stigma is bad for the family of PWMI.
Employed family members of PWMI are more likely to lose their jobs than employees without a mentally ill family member (Mark, 2013, p. 15). The risk of losing jobs is due to the stigma of being labelled incompetent or a burden to the employer. Findings of Mark (2013, p. 2) indicate that living with a mentally ill family member increased their chances of being absent at their workplace. Mentally ill people require the constant presence of their close relatives. Therefore, employers may sack employees with a mentally ill family member to avoid inconveniences caused by their absenteeism in the future. Employers feel that such employees as taking too much time when they ask for permission to see their patient.
Stigma has adverse impacts on the psychological and emotional health of family members of PWMI. The society is responsible for labelling relatives of PWMI as incompetent, blaming them for the mental condition, isolating them socially, and associating them with misfortune among others (Shefer et al., 2013, p. 540). These issues may result in psychological distress. Caregivers experience emotional problems while living with such stress of supporting mentally ill relative as consequences of expressed emotion. McKay, Abramowitz, and Storch (2017, p. 179) define expressed emotion as a concept that describes the emotional issues family members go through in the process of caring for their mentally ill relative. The concept is common among patient with schizophrenia. In most case, caregivers may have a high expressed emotion due to the disturbing behaviour of a mentally ill relative. They may engage in emotionally intense exchanges with patients, thereby, affecting their psychological health.
According to Mark (2013, p. 12), living with a person with mental illness subjects family members to emotions such as guilt, grief, exhaustion, depression, and anger (). Family members of patients may develop guilt when they accept the community’s belief that they are responsible for the condition of the mentally ill relative. The stigma by association may make parents feel guilty of not detecting the mental health problem earlier to facilitate its effective management. Mark (2013, p. 13) also found that caregivers felt guilty for being angry and feeling frustrated with a mentally ill relative or moving the patient to a residential facility. They fail to understand that such experiences are expected once a relative is diagnosed with a mental illness. These problems can be reduced if the families get sufficient support from the community and mental health professionals. However, since the support is insufficient due to the stigma of association, emotional problems of caregivers are frequent.
Stigma by association may cause compassion fatigue, which makes caregivers to reduce their interest or capacity to bear their sufferings resulting from living with a mentally ill relative (Mark, 2013, p. 14). Family members may be depressed by the thoughts of the troublesome experiences of caring for ill patients. They will start engaging in thoughts of how the community will treat them after news of their mentally relative gets out. Also, caregivers are likely to grief for their lives and that of their ill relatives, especially for cases of severe mental illness. Parents grief for the loss of the future of their mentally ill child after the diagnosis of a mental illness (Mark, 2013, p. 13).
Another effect of stigma on the family of PWMI is financial problems (Mark, 2013, p. 15). The stigma by association to mentally ill relative may result in relative losing their jobs, thereby, reducing the income of the family. Since mentally ill individuals require more attention, the amount of money needed to cater for their needs and healthcare provision is high (van der Sanden et al., 2014, p. 713). The financial problems of the family are heightened by the social isolation of families because their members have a mental illness. Van der Sanden et al (2015) found that families of PWMI have limited support due to their smaller social networks (p. 712). They often have fewer friends. The involvement of caregivers in income-generating activities in the community reduces due to the prevailing perception of such individuals. Mark (2013) further explains that such caregivers have reduced capacity (p.14). The psychological problems of family members of PWMI may also limit their financial ability.
Coping With Stigma
Previous research studies have presented various ways that families of PWMI use to cope with stigma. Van der Sanden et al. (2014, p. 714) identified two coping strategies through their study, which include problem-focused coping and emotion-focused coping (). The problem-focused coping strategy involves directly changing the elements of the mental illness that cause stigma. The study by van der Sanden (2014, p. 714) found that participants used selective disclosure of the experiences to avoid stigma and its adverse impacts. Although caregivers of mentally ill relatives know that functional openness is good, they usually do not explain to people that their families are not doing well. They are also not comfortable explaining to other people why they are not doing well.
Some individuals employ the problem-focused coping method by seeking emotional support, understanding, and empathy (van der Sanden et al., 2015, p. 714). Isolation is one of the problems that family members of PWMI experience as a result of stigma by association. Therefore, seeking emotional support from the community may help caregivers to manage the adverse impacts of stigma by association. Some caregivers may talk to others to relieve themselves of the psychological distress and seek emotional support (van der Sanden et al., 2015, p. 714). Mental health professionals may offer the best emotion support due to their deep understanding of mental illness affect the relative of the caregiver. Some families of mentally ill persons establish support systems that could help them create awareness of the experiences and seek support. Support groups may help families to reduce social isolation from the rest of the community (Mark, 2013, p. 16). Caregivers of mentally ill relatives can support each other emotionally and seek financial support from donors and well-wishers through their support groups. People can use the support groups to build up their network so that other individuals can assist them to care for ill relatives in their absence.
Family members of PWMI may exhibit denial, behavioural disengagement, self-distraction, acceptance, and venting. Van der Sanden et al (2014) consider acceptance as the best emotion-focused coping strategy. Family members should accept that mental illness is real (p. 714). Acknowledging that stigma is one of the expected outcomes of living with mentally ill family member is a step towards handling stigma. The study by van der Sanden et al. (2014) indicated that family members cannot change the mental state of their relative, but they can make their lives better by acknowledging that stigmatization is there and they have a role to manage it (p. 714). The psychological distress and thoughts what will be experienced after the diagnosis of mental illness can be addressed through acceptance and seeking information and understanding.
Self-distraction strategies are also employed by some caregivers to forget about the stigmatizing situation of their family. Caregivers may engage in activities that make them forget about their stressful experiences (van der Sanden et al., 2014, p. 714). The environment at their homes is stressful. Therefore, caregivers have to create comfort for themselves. Friends and workmates are the common sources of comfort used by caregivers. Denial and rejection are ineffective strategies since they do not eliminate stigma by association. Furthermore, they only breed stigma and increases the magnitude of its effects. Some family members employed ignoring negative comments by community members and saved their energy for important things (Karnieli-Miller et al., 2013, p. 258).
The psychoeducational approach is a coping strategy for stigma by association (Mark, 2013, p. 22). According to Mark (2013, p. 22), it is effective in managing stigmatizing situations in a family with a high expressed emotion. The four phases of psychoeducational approach help families to have confidence and understanding amidst stigma by association. Mental health professionals play a significant role in psychoeducation (Mark, 2013, p. 23). They educate family members about strategies they can employ to feel less stigmatized. Karnieli-Miller et al. (2013, p. 258) acknowledge the emotional problems of confronting stigma with education. However, Karnieli-Miller et al. (2013, p. 259) found that it is through education that the perceptions of people about mental illnesses can be transformed. The dissemination of information reduces misconceptions about mental illnesses. The use of education to counter stigmatization is hindered by the belief by other people that they do not have the ability to change the attitudes of other individuals. This ability is dependent on the approach used to educate members of the public. Support systems can be used to facilitate education and anti-stigma campaigns effectively due to the number and type of people involved.
The strength-based approach holds that the family has the capacity to grow, change, and adapt to stigmatizing situations associated with mental illness (Mark, 2013, p.24). Through the guidance of mental health professionals, family members may perform an analysis of each member, the family, and environmental factors including cultural beliefs. Adopting appropriate strategies for coping with stigma by associated with living with a mentally ill relative.
Summaries of the Research Articles
Van der Sanden et al. (2014) acknowledge that PWMI are usually confronted with stigma. Their study explored the stigma associated with PWMI, family experiences and their effect on family members. Van der Sanden et al. (2014) used semi-structured interviews to obtain data from 23 participants. The demography of the participants indicates that several mental illnesses were reviewed by Van der Sanden et al. (2014), thereby, enhancing the reliability of their findings. The approval of the study by the Research Ethics Board shows that Van der Sanden et al. (2014) upheld ethical and moral principles guiding research studies. Van der Sanden et al. (2014) found that family members of patients encountered stigma by association and have a significant burden of caring for their patients. Among the forms of stigma experienced by family members included social isolation, being blamed, and not taken seriously. Time-consuming and tiresome caregiving is a common burden experienced by family members. According to Van der Sanden et al. (2014), access to social services and social, instrumental, and emotional support by the community can help family members of patient address the forms of stigma and burden. Therefore, the community has a role to play in the management of mental illness and improving the well-being of patients and family members.
Culture shapes societal responses to mental illness patients as it influences stereotypes, service delivery, and support-seeking. Shefer et al. (2013) conducted a study to explore the cultural beliefs of the UK Blacks and minority communities regarding mental illness stigma. The investigators used focus groups to collect data. This technique is appropriate for the study since it effective in collecting detailed data about the beliefs of the participants of mental illness. Shefer et al. (2013) adhered to ethical principles of a research by obtaining informed consent and upholding voluntary participation. The findings of the study indicate that cultural stereotypes were results of the lack of knowledge and understanding of mental illness. Shefer et al. (2013) considered these two factors as the main causes of stigma affecting patients and their family members. Cultural beliefs shape how people view their family when they have a mentally ill relative. The perceptions of living with a mentally ill patient are one of the causes of weak relationships among family members (Shefer et al., 2013). The findings of Shefer et al. (2013) suggest that one way of addressing the issue of stigma is through education and creating awareness about mental illnesses to weaken cultural stereotypes and transform the perception of people of mental health problems.
The effects of stigmatization extend to the family members of mental illness patients. Since they are affiliated with the patients, they become victims of stigma by association. Van der Sanden et al. (2015) conducted a study using semi-structured interviews of 23 participants consisting of family members of mental illness patients. The approval by an ethical committee indicates that the study adhered to ethical principles of research and honoured the dignity of its participants. The findings of van der Sanden et al. (2015) show that close relatives are also victims of stigma by association. They experienced various forms of stigma from the community, mental health professionals, and civil servants. The forms of stigma experienced by family members were affected by the nature of family relationships, co-existence, and gender. Van der Sanden et al. (2015) recommended the provision of emotional support to family members and tailored education to the community and mental health professionals. Since these three groups comprise of the environment of mental illness patients and family members, their perceptions are a hindrance to the fight against stigmatization. Therefore, the transformation of the attitudes towards mental illness is necessary for improving the well-being of patients and their family.
According to Mark (2013), there are several studies on the experiences of mentally ill patients. However, there is limited research on the experiences of caregivers of mentally ill family members. Mental illness of the patient has spill over effects on their family members. Mark (2013) conducted a study to explore the experiences of family members of mentally ill patients. The researcher aimed at developing an understanding of the perspective of caregivers regarding living with and caring for a mentally ill relative. Mark (2013) interviewed 14 caregivers actively involved in addressing the needs of ill patients. Mental illness covered by the study included schizophrenia, schizoaffective disorder, and bipolar disorder. Mark (2013) used open-ended questions during the interviews to collect data. The researcher provided a detailed account of the ethical principles she adhered to during the study. Market (2013) obtained informed consent from participants, made participation voluntary, safeguarded confidentiality and privacy of identifiable information, and sought the approval of the study from an ethical research board. The study found that caregivers found it stressful to care for mentally ill patients. Caregivers could no longer enjoy the normal lives due to reduced personal freedom, leisure, absenteeism at their workplaces, and experiencing emotional problems. Insufficient community resources and support for patients and caregivers made it more challenging. Stigma by association is responsible for the lack or limited access to community mental health facilities.
The findings of the majority of studies indicate that family members of PWMI experience stigma. However, Karnieli-Miller et al. (2013) argue that there is less focus on the types of experiences and how they manage such experiences. Karnieli-Miller et al. (2013) conducted a research to explore the experiences of family members of mental illness patients and how they cope with the associated stigma. The investigators used the crystallization analysis of data obtained through the use of focus groups. It is expected that research involving human subjects should adhere to ethical principles to uphold respect and dignity of participants. Karnieli-Miller et al. (2013) have not mentioned anywhere in the article that they adhered to ethical guidelines of research. However, the approval of the study by the research review board indicates that it adhered to ethical guidelines. The findings of the study show that family members experience forms of stigma such as blame, rejection, and social isolation. They also exhibit emotions such as guilt, shame, disappointment, and endangering hurt (Karnieli-Miller et al., 2013). The coping strategies varying from one caregiver to another depending on the personal motivation, access to resources, and willingness of their relatives to disclose their encounters. The family is the central institution for addressing the stigma of association. The adoption of coping strategies should be done based on the mental illness, needs of the family members, and access to resources.
Comparing and Contrasting
The methods used by the studies reviewed in the literature review section varied. However, the findings of the studies were consistent. All the studies employed a qualitative approach to data collection. The selection of qualitative methods was appropriate since the experiences of family members of PWMI can best be determined qualitatively. According Roberts (2016, p. 92), qualitative methods are appropriate for the five studies because they facilitate the capturing of the lived experiences of the family members of PWMI. Bali et al. (2013, p. 308) also argue that qualitative methods are better positioned to study social constructions such as stigma and their aspects. The stigma by associated experienced by family members of PWMI is better captured through qualitative methods since experiences are defined through social interactions and cultural factors that influence the life of close relatives of PWMI (Bali, 2013, p. 308).
Van der Sanden et al. (2014), van der Sanden et al. (2015) and Mark (2013) used semi-structured interviews while other two studies used focus groups. These methods have their advantages and disadvantages. Hesse-Biber (2013) argues that focus groups are appropriate when researchers want to study the viewpoints and disagreements among participants. Since the stigma experienced by the relatives of PWMI were based on their viewpoints, focus groups were appropriate. Face-to-face interviews cannot capture the different perspectives of various family members of people living with disabilities. Therefore, Shefer et al. (2013) and Karnieli-Miller et al. (2013) are more reliable than the other three studies that used interviews. The openness of focus groups provides investigators with the opportunity to collect large volumes of quality data (Stewart and Shamdasani, 2014, p. 45). Focus groups are advantageous financially compared to interviews because the analytical treatments are light.
On the other hand, interviews allow researchers to go much deeper into the experiences of stigma by the association of caregivers of relatives with mental illness. Interviewers have less important roles in interviews than in focus groups. The success of focus groups is dependent on the moderator, who is required to have a well-prepared guide. This aspect gives focus groups the high risk of failure compared to interviews. Despite the differences between the two methods employed by the investigators, they facilitated the collection of qualitative data necessary for achieving the objectives of the study.
