Summary of themes and subthemes
A summary of the themes and subthemes arising from the data is presented in Table
3.
Table 3
Summary of results
Types and forms of stigma and discrimination | • Internalized stigma |
• Externalized stigma |
Experiences of externalized stigma | 1. From health professionals and in health facilities |
• General ill-treatment from clinic staff: |
• Avoiding attending to PWMIs and other ill treatment from nurses |
| 2. From family members |
• Being; denied of food; |
• made fun of; |
• neglected; |
• beaten; |
• tied to a tree |
| 3. From community members (neighbours, employers and friends) |
• Being; labelled |
• made fun of |
• pushed around |
• denied entrance to shopping outlets |
• made to do filthy jobs |
• denied wages for jobs done |
• lack of support and empathy |
Causes of psychiatric stigma | Stigmatizing misconceptions about mental illness |
• Mental illness being a deliberate act |
• PWMIs are aggressive |
• Mental illness is a result of the individual’s weakness |
| Traditional explanatory models of mental illness which may lead to delay in seeking help |
• Mental illness caused by witchcraft |
• Mental illness being a sign indicating a call to be a ‘Sangoma’ |
Impact of stigma on service users | • Being unable to lead normal lives |
• Worsened state of health |
Interventions to curb psychiatric stigma: participants perspectives | 1. Education |
i. Education/awareness raising for: |
• Family members |
• Community members |
• Service users |
• Service providers |
ii. Education methods: |
• Health education |
• Media (pamphlets, TV, radio) |
• Town hall/community meetings |
• Health talks at clinics |
iii. Psycho-education and psychosocial rehabilitation for family members and service users |
| 2. Acceptance and support by family and community members |
| 3. Supervision of health care service providers |
| 4. Integration at health facilities |
| 5. Sanctions/legal action against agents of discrimination |
Results have been categorised into four major themes with their associated subthemes as presented in Table
3. These major themes are; service users’ experiences of stigma and discrimination, causes of psychiatric stigma, impact of stigma and discrimination on service users and suggestions to combat stigma (from the perspectives of the study participants). Results are discussed under their major themes and subthemes.
1.
Experiences of stigma and discrimination
Results from this section have been grouped according to the different types and forms of stigma and discrimination experienced.
1.1
Internalized stigma
The internalization of the stigmatizing attitudes experienced by PWMIs was a common feature in the reports of service users. The impact on their help-seeking behaviour was reported as follows:
Something that can prevent people from seeking help…there are people who are afraid, someone knowing that she/he has problems, but they think "what will people say?", that is the thing that can prevent people (from seeking for help). –
Service user (DH17)
1.2
Externalized/experienced stigma
Results in this section have been grouped according to the places were stigmatization is perpetuated as well as stigmatizing agents which include, health professionals, family members and friends and community members.
1.2.1
Ill treatment at health facilities and by health facility staff
While some service users reported being treated well at the clinics, there were reports of stigmatization of service users at the clinics where they seek help. From security personnel attached to health care facilities to clinic staff, there were reports of PWMIs being beaten, shouted at, being made fun of or simply ignored. These experiences can lead to PWMIs being hesitant to seek help.
Yes. There is the other one who used to come to the clinic and cause a lot of commotion. The security guard who used to work here in the clinic would then beat him up… The security guard who used to work here was a female and the person who suffered from mental problem was a male. She would beat him up and push him out of the clinic premises (saying)… he is not our patient here in the clinic. –
Lay counsellor (LCK3)
It is interesting to note that both service users and professional nurses reported that PWMIs sometimes get shouted at or made fun of at the clinics as exemplified in the following narrative by a nurse. This behaviour can deter PWMIs from seeking help at the clinics.
Yes, most people would make fun of mentally ill patients and they would say funny comments such as “this is a lunatic”. We used to experience that at this clinic, it’s not nice at all and this can happen to anybody. –
Nurse (N5)
Professional nurses were also accused of refusing to give medical attention to PWMIs as explained by a lay counsellor.
You find that all the professional nurses don’t want to do mental health work. –
Lay counsellor (LCMS6)
It should be noted that many of the health professionals when asked about whether stigmatizing and discriminatory practices towards PWMIs occur at their facilities were reticent to mention such incidents. They seem to be more comfortable providing examples of such behaviours in families and the communities.
1.2.2
Ill treatment from family members
Various experiences of stigmatization and discrimination within the family were reported. These included PWMIs being denied food; laughed at; neglected; beaten and being tied to a tree. Some service users recounted the treatment they got from their family members while service providers testified to having witnessed some of these stigmatizing behaviours either in their homes or around their neighbourhood.
They tie them up…they would tie her leg to the tree and she won’t be able to walk, and most of the time they wouldn’t bath her, she was dirty. –
Lay counsellor (LCO1)
Do you mean my family? They just like saying things like I should remember that I’m a lunatic. That hurts and that’s why I end up crying. –
Service user (S6)
The lack of care showed by some members of the family of PWMIs seems to pose a challenge to the work of health care service providers as mentioned in the narrative below.
They also complain that even in their families they also get discriminated and they don’t give them food and that’s why they end up eating in the dustbins. They only bath them when they go to collect their grant. –
Auxiliary social worker (ASW2)
1.2.3
Ill treatment from community members
The experiences of stigma within the community have been presented here under the various stigmatizing agents within the community. These include neighbours/general public, church members, friends and employers.
From neighbours/ church members, friends and other members of the public: Reports from service providers and service users indicate that PWMIs suffer a lot of stigmatization and discrimination from the members of their community including children. They are provoked, called names and pushed around because of the state of their mental health. This ill-treatment is not stopped even if PWMIs are stabilized or getting better. One cvparticipant saw this as a problem peculiar with the black race group.
I’ve seen one woman in town who has a mental illness, people were pushing her around and the more they did that, the more she got aggressive. –
Nurse (N1)
Black community has one problem, if a person has a mental illness and gets better, he will always be stuck with a lunatic name....the more he receives teasing he might get stressed out and relapses. –
Auxiliary social worker (ASW2)
From employers: Discrimination from employers was also reported with PWMIs sometimes being inadequately compensated for work done or made to do filthy jobs that other members of the community would normally not want to engage in.
There are so many people in the community who make them do filthy jobs. –
Auxiliary social worker (ASW1)
2.
Causes of psychiatric stigma
Psychiatric stigma stems from a multiplicity of reasons, many of which stem from beliefs about the causes of mental disorders. Some of these misconceptions or traditional beliefs are stigmatizing in themselves, while others result in delay in seeking help for PWMIs. The beliefs presented here include those about depression and schizophrenia.
2.1
Stigmatizing misconceptions about mental illness
Mental illness being a deliberate act
One of the misconceptions about mental illness that emerged is the belief held by community members that people with mental illnesses are deliberately pretending to be sick and were deliberately acting out the symptoms of mental illness they displayed. This perception also contributes to a delay in help seeking. This is explained as follows by a participant.
There are those who hallucinate and they would say …he is acting that way deliberately and they delay seeking help for that person… –
Auxiliary social worker (ASW2)
The reason for this misconception may be because apart from their behaviour which sometimes does not conform to the norm in the society especially when they are seriously ill, PWMIs generally look physically well. One service user shared his experience when asked why he thinks people with mental illness are being stigmatized.
The thing is, they say we are pretending and we are not. –
Service user (S2)
PWMIs are aggressive
People with severe mental disorders such as psychosis/schizophrenia were also perceived as being aggressive. Although this misconception is based on the behaviour of PWMIs when having a psychotic episode, it was presumed to apply to all persons with mental illness, irrespective of their condition or whether they were symptomatic or asymptomatic. Health care service providers expressed a fear of working with service users with severe mental disorder as a result of this perception.
I’m scared to work with them because I know crazy people as aggressive people. –
Lay counsellor (LCO2)
Mental illness being a result of the individual’s weakness
The belief that mental illness is due to a person’s weakness was also prominent. Surprisingly, this view was expressed by two health care workers. This misconception can be both stigmatizing and delay referring service users for specialist care.
You see that one (schizophrenia)… in my point of view it does not need treatment. It’s just an individual’s weakness. –
Lay counsellor (LCGM1)
2.2
Mental illness caused by witchcraft
A common understanding of the cause of mental illness in the community was the belief that people with mental illness have been bewitched. Due to this belief system, many families seek care from African traditional healers (
sangomas) before they visit the clinics. This belief also results in a delay in seeking medical help as expressed in the following narratives. It should be noted that recourse to
sangomas as the first port of call in seeking for solutions to problems relating to health and general well-being, is not a phenomenon peculiar to the study participants as it is a common phenomenon especially among black South Africans [
37,
38].
Traditional explanatory models of mental illness which may lead to delay in seeking help
The belief is that the person would have been bewitched and that’s why the person would be taken to a ‘sangoma’; they are taken there to find out who is it that bewitched them to become mentally ill. –
Lay counsellor (LCK3)
Mental illness as a sign indicating a call to be a ‘Sangoma’
It was also mentioned that sometimes, the symptoms of mental illness are sometimes taken for a sign indicating a call by the ancestors to take up the role of a traditional healer (a ‘sangoma’) or as being gifted. Seeking help based on early symptoms therefore becomes delayed as the family members would rather go to the traditional healers first.
Yes until complications…until serious complications because the person would tell someone or a family member that ‘I’m hearing people talking to me’. They would say maybe you are gifted in spiritual issues of traditional healers. Another person would say I’m seeing people here who have already passed on; they also say it’s a gift. –
Nurse (N9)
3.
Impact of stigma on service users
Reports from participants indicate two major effects suffered by PWMIs as a result of stigma and discrimination: being unable to lead normal lives; and a worsening state of health of the service user. A worsening state of health could be as a result of the direct consequence of stigmatizing attitude or indirectly due to a delay in seeking help for PWMIs or being given poor treatment as a result of the stigmatizing behaviour of service providers at the clinics. This also impacts on adherence to routine care as PWMIs who are discriminated against will be reluctant to return to the clinic to follow-up on their treatment regimen.
3.1
Being unable to lead normal lives:
Results suggest that PWMIs become home bound as a result of the real and perceived fear of being stigmatized. This makes them unable to live and move around their neighbourhood or carry out normal activities like other members of their community.
I couldn't get out of the house to fetch some water from the standpipe because the moment you come out of the house, people would be looking at you. If I go to church; I was afraid they would say that she has started to attend church because her life has failed. –
Service user (MD17)
3.2
Worsened state of health:
Reports from all categories of participants in this study point to the fact that stigmatizing attitudes worsen the mental health of PWMIs. This is evident in the following narrative.
(They say) “You behave as if you are crazy and you are not.” When they say that, the voices attack me and become louder.... My father is the person who says I sleep too much… I become irritated when he speaks like that. –
Service user (S2)
4.
Interventions to curb stigma: perspectives from participants
In this section results on the suggestions made by all the categories of participant as to what they think should be done to address psychiatric stigma are presented. These include education, counselling, acceptance, care and support, training, integration at health facilities, sanctions/legal actions on those who perpetuate discrimination and supervision of health care staff.
4.1
Education
Suggestions on how to use education or raise awareness aimed at curbing psychiatric stigma have been grouped here under two headings; who to educate and suggested means of education. Psycho-education and psychosocial rehabilitation of service users and family members were also suggested.
4.1.1
Who to educate
Education of family and community members as well as service users themselves was highlighted as key to reducing stigma. The Family, community members and health care service providers were reported to need education to help them understand what service users are actually going through to motivate them to seek help for the person with mental illness rather than ignoring them or having them beaten or treated with disrespect.
Psycho-educate their family members about their illness so that they can treat them just like any other normal person.
– Nurse (N1)
It was also suggested that service providers need to be educated on how to handle PWMIs.
These (health) services need for people to be educated…on how to handle a patient… how to handle people. They need people who are humble…those who know how to talk and handle themselves. –
Service user (DH14)
In the same vein, it was suggested that mental health service users should be educated especially about the type of mental disorder they may be suffering from. This would enable them understand what they may be going through and would help them cope better as reported by a participant with maternal depression.
The information about these things is not easily accessible and doesn't reach most of us. For me to know that I am depressed is through reading; there is no one who told me about depression. I like reading so; I am able to search for information on my own. –
Service user (MD13)
Awareness by community members of the problems faced by PWMIs can enable community members to assist PWMIs to seek help as expressed by one professional nurse.
Yes, I think if the community could be involved that would make the situation much better. If they know the signs and symptoms they can identify them in the community and send them to the clinic to get help.
– Nurse (N5)
4.1.2
Educational methods
Participants also highlighted the methods of education that they perceived would be effective in combating psychiatric stigma. These include; awareness programmes through health talks at the clinic, media outreach through pamphlets, and in the print and electronic media, town hall, church and community meetings.
We lack information if there were pamphlets being distributed about people like that, information being distributed through radio because we have a radio station. I think if ever there was something showed on TV how these people can be treated then it will reach them and it will get better.
– Lay counsellor (LCMS3)
4.1.3
Psycho-education and psychosocial rehabilitation for family members and service users
Psycho-education for family members to assist them to cope better with a PWMI in their care as well as psychosocial rehabilitation for service users to assist them to understand and cope better with their illness and the effects of stigmatization and discrimination were highlighted by participants.
Counselling and we can also give them management (techniques) … because you educate the family about the client’s condition and the client also has to have an idea what disorder she has and how she can manage it.
– Nurse (N4)
4.2
Acceptance and support
The participants of this study were of the opinion that helping people (family members, friends and community members) accept PWMIs would assist in reducing stigma. Acceptance should be expressed in the quality of care and support given to PWMIs and education is an important tool to achieve this.
If the patient could be accepted and understood by the community he would have courage to do something about his life but the more he (is) teased (the more) he might be stressed out and relapses.
– Auxiliary social worker (ASW2)
Support groups with members going through the same experience were seen as means of helping PWMIs to gain social and emotional support. Such support groups would provide service users the opportunity to share their experiences and perhaps learn from one another.
Another extra option would be support groups whereby you’ll be sitting with people who are having the same challenges and talking about the same issues as well. Socially they do need support.
– Nurse (N9)
4.3
Supervision of health care providers
Supervision was suggested as a means of checking the activities of health care service providers to ensure they are delivering on their duties. This is expressed in the statement from one service user below.
These people don’t treat us well- these people- these sisters they don’t treat us well… maybe there should be people to come check every month or every two weeks to see how we are being treated- to see what is happening. –
Service user (DH9)
4.4
Integration at health facilities
The current approach of integrated chronic disease management in South Africa was also perceived as a means of reducing the stigmatization of those with mental illness. This ensures that the identity of a PWMI is kept confidential and reduces stigma and discrimination as expressed by one lay counsellor.
See what is going on here today… (you) see a diabetic, asthmatic and HIV positive person in the same line - they are all going to the same Sister for medication and confidentiality exists. On the outside it’s a cover they are the same, in some clinics before it used to be different.
– Lay counsellor (LCO1)
4.5
Sanctions/legal action against agents of discrimination
Sanctioning those who ill-treat PWMIs and bringing them to face the law was expressed as a means of curbing stigma was suggested by some participants. These participants were of the view that people in the society should not just get away with victimizing and abusing PWMIs.
I think charges should be pressed on people who ill-treat mentally ill patients. –
Service user (S2)