Participant characteristics
Fourteen of the participants had completed at least four years of secondary education, whereas four participants had only attended primary school and two had a tertiary qualification. Regardless of education level, most participants were unemployed and relied on their relatives for financial support. The majority (n=15) lived with someone, though less than one in four reported living with their spouse and/or children (Table 1).
Table 1 Profile of participants living with schizophrenia (n=18)
|
Characteristics
|
n
|
%
|
Age in years
|
|
|
20-39
|
5
|
28
|
40-59
|
12
|
66
|
60 and above
|
1
|
6
|
Marital status
|
|
|
Single
|
8
|
44
|
Married
|
4
|
22
|
Divorced/separated
|
5
|
28
|
Widowed
|
1
|
6
|
Living arrangements
|
|
|
Alone
|
3
|
16
|
Parents
|
2
|
12
|
Spouse (and children)
|
4
|
22
|
Sibling or other relative
|
7
|
38
|
Children
|
2
|
12
|
Educational level
|
|
|
Primary grade 1-7
|
4
|
22
|
Secondary (Form 1-6)
|
12
|
66
|
University/College
|
2
|
12
|
Employment status
|
|
|
Unemployed
|
11
|
62
|
Employed
|
4
|
22
|
Self-employed
|
3
|
16
|
Quality of life scores
Cronbach’s alpha is stated here as a measure of the questionnaire’s internal consistency for all the 26 items, and for each domain. An Alpha score between 0.70 and 0.90 demonstrated good internal consistency [36]. Collectively, the 26 items showed good internal consistency (0.91). Internal consistency for domains one (physical health) and four (environment), demonstrated good reliability (0.83 and 0.81), respectively. In contrast, the reliability scores of the psychological (0.59) and social relationships domains (0.31), reliability scores were low (Table 2). In the psychological domain, if question seven ‘How well are you able to concentrate’ was deleted the Cronbach's Alpha value would increase to 0.72 and show good internal consistency.
Although almost half of the participants rated their QOL as good (n=8; 44.4%), seven (39%) considered it poor. Comparing QOL by gender, yielded was no statistical difference, though interview data suggests this is an issue. The environment domain obtained the highest mean score (25.1), whilst the lowest was in the social relationship domain (9.5). However, the low score in the social domain was expected as it was based on three items instead of the four recommended for assessing internal reliability [37]. The low alpha score in the psychological domain (0.59) could be attributed to the limited number of valid responses (n=16) or the poor interrelatedness between the items [38].
Table 2 Summary of the WHOQOL-BREF domains (n=18).
|
|
Domain
|
No. of items
|
Mean
|
SD#
|
n
|
Cronbach’s alpha
|
1. Physical
|
7
|
24.2
|
6.37
|
17
|
0.83
|
2. Psychological
|
6
|
20.1
|
5.07
|
16
|
0.59
|
3. Social relationships
|
3
|
9.5
|
2.73
|
18
|
0.31
|
4. Environmental
|
8
|
25.1
|
7.71
|
18
|
0.81
|
Cronbach’s alpha (α) value shows the measure of internal consistency. #Standard Deviation
Overall perception of general health and quality of life
The first two questions ask about the participant’s overall perception of their QOL and general health [28]. In terms of overall QOL, eight participants, five of them men, rated their QOL as good or very good whereas, three women rated their QOL as poor. Similarly, most participants (n=10), six of them men, were satisfied with their overall heath. Two thirds of participants (n=12) were satisfied with access to health services. Sixteen participants, an equal mix of men and women, expressed satisfaction with their ability to perform activities of daily living. Those aged over 50 (n=8) rated their QOL higher compared to seven participants aged between 20-39 years, who rated their QOL as poor. Over half the participants rated their QOL in the physical domain as generally good. However, compared to the other age groups, pain prevented those aged between 40-59 from doing everyday things, and meant they were more likely to need medical treatment to function in daily life.
Age, education, gender, marital status and quality of life
Table 3 shows QOL results by domain for age, gender, education, and marital status. While the results indicated there were no significant relationships between socio-demographic characteristics and most domains, there was a significant relationship (p=0.01) between physical health and participants’ level of education. Those with primary education rated their physical health better (mean rank =13.8), compared with those with secondary level education (mean rank=7). In addition, there was a significant relationship (p=0.05) between age and the likely need for medical treatment to function effectively in daily life. Participants aged forty and above (n=13) reported needing medical treatment to function more than those aged below forty (n= 5). The relationship between gender and the extent to which life was considered meaningful, yielded another probability statistic approaching but not achieving statistical significance (p=0.053).
The influence of marital status on participants overall QOL though not statistically significant was also approaching significance (p=0.053). Being married or living with a partner negatively impacted overall QOL. Whereas five out of the seven participants who were single rated their overall QOL as good or very good, none of those who were married or living with a partner, did. In addition, three participants who were widowed, divorced or separated, reported satisfaction with their QOL. It would be worth replicating the study to assess the effect more rigorously.
Table 3 Quality of life results by domain for age, gender, education, and marital status (n=18)
Domains
|
Mean rank
|
|
p-value
|
|
|
|
|
|
Age group (years)#
|
|
|
|
|
|
|
|
20-39
|
40-49
|
50+
|
|
Physical
|
8.6
|
6.25
|
12.93
|
0.07
|
Psychological
|
8.6
|
10.17
|
9.57
|
0.89
|
Social
|
10
|
6.17
|
12
|
0.13
|
Environmental
|
6.5
|
8.83
|
12.21
|
0.17
|
Overall QOL (Q1)
|
7.8
|
10.29
|
10.29
|
0.68
|
Overall health (Q2)
|
8.3
|
8.5
|
11.14
|
0.56
|
|
|
|
|
|
|
Gender
|
|
|
|
|
|
|
|
Male
|
Females
|
|
|
Physical
|
9.21
|
10.08
|
|
0.74
|
Psychological
|
10.88
|
6.75
|
|
0.12
|
Social
|
10.04
|
8.42
|
|
0.54
|
Environment
|
9.5
|
9.5
|
|
1
|
Overall QOL (Q1)
|
10.04
|
8.42
|
|
0.59
|
Overall health (Q2)
|
9.5
|
9.5
|
|
1
|
|
|
|
|
|
|
Education level
|
|
|
|
|
|
|
|
Primary
|
Secondary
|
|
|
Physical
|
13.8
|
7
|
|
0.01*
|
Psychological
|
9.9
|
8.63
|
|
0.63
|
Social
|
11.1
|
8.13
|
|
0.26
|
Environment
|
11.3
|
8.04
|
|
0.22
|
Overall QOL (Q1)
|
9
|
9
|
|
1
|
Overall health (Q2)
|
11.5
|
7.96
|
|
0.18
|
|
|
|
|
|
|
Marital status#
|
|
|
|
|
|
|
|
Single
|
Married
|
Divorced/widowed
|
|
Physical
|
11.43
|
9.6
|
5
|
0.08
|
Psychological
|
11.71
|
6.7
|
7.5
|
0.17
|
Social
|
9.71
|
11.3
|
5.7
|
0.18
|
Environment
|
11.21
|
7
|
7.9
|
0.30
|
Overall QOL (Q1)
|
11.21
|
4.6
|
10.3
|
0.05**
|
Overall health (Q2)
|
10.21
|
8.6
|
7.7
|
0.67
|
Note. Mann-Whitney U-test analysis for all characteristics, except #denotes Kruskal–Wallis test scores. p< 0.05 denoted by * is considered significant. **denotes the p value=0.053 has been rounded to 0.05.
|
Overview of qualitative themes
Thematic analysis generated three major themes related to QOL: family dislocation; living with stigma and discrimination; and limited and variable access to treatment and support, and for each of these, three subthemes (Figure 1). To maintain participants’ anonymity, pseudonyms have been used for attributing supporting quotes.
Theme 1: ‘Nowhere to go (Kusina mai hakuendwi)’’: Family dislocation
Difficult childhood: ‘kusina mai hakuendwi’- (children don’t go anywhere alone without their mother’s protection)
From a cultural standpoint, children do not go anywhere alone without their mother’s protection. Growing up with a parent or sibling with schizophrenia brought emotional and psychological struggles for participants. They explained how difficult life was for the whole family, especially the younger children, when trying to cope with having a parent diagnosed with schizophrenia.
Failure to complete school was often linked by participants to a parents’ sickness or death which resulted in lack of funds to support the family. Spiwe, whose mother had also had schizophrenia attributed the onset of her own condition to witnessing her mother’s experience living with the illness. She said ‘…following my mum’s death, I became so stressed and in much anguish after realising that I no longer had a parent. I loved my mum so much…’. Similarly, Charles whose mother lived with schizophrenia, stated that once his father remarried, the stepmother did not treat him well. He recalled ‘My life was tough, and it was difficult staying with my father who increasingly disliked us, his heart had become hardened towards us’.
Apart from describing how growing up with a relative with schizophrenia affected their childhood, participants spoke about their experiences of upheaval within their families.
Family upheaval
The subtheme ‘family upheaval’ captures the family dislocation and dynamics experienced by some participants, who revealed that their parents had either divorced, separated or they did not know their whereabouts. For instance, Luke, who was the youngest participant, described how he had been raised by different relatives because his parents had divorced. Consequently, at the time of the interview he was living with his grandmother (ambuya). He stated that he was,
‘…moved from the urban village to live here in Harare… I grew up [moving] from pillar to post being told now you’re going to live with this or that relative in the rural area…now you should go and live with grandma (ambuya)…’.
Luke explained that having a stable home and loving parents and a nurturing environment can improve mental well-being. The complexity of dealing with family relationships, particularly separation, was a painful issue for some participants. Florence highlights the vulnerability of mothers associated with losing their children,
‘I'm thinking about the issue of [my]children, that they are small children who were forcibly taken from me by my ex-husband after he failed to pay maintenance. He said that he didn’t have the money to pay for the welfare of the children whilst they are living with me here. I thought he would take me too together with my children so that I will go and live with them and look after them, but it didn't happen’.
The complexity of family relationships was compounded by the culture and its patriarchal gender traditions, whereby wives are not considered family.
Patriarchal gender traditions: wives are not kin ‘mukadzi mutorwa’
This subtheme describes how some female participants’ accounts (n=4) revealed that patriarchal gender traditions affected how they were treated and discriminated against by their husband. They reported that their marriages were dissolved, or their husbands left them and married another woman without their knowledge because of their schizophrenia. One woman was thinking of approaching the law courts to help her access her children who were living with her former husband. However, lack of finances to pay for a lawyer and information about the legal process were preventing her from doing this.
‘I have to go to court to present my case…I built my home with my husband for two years living together just the two of us. And he took another woman to be his wife...now he is telling me to go away from his rural homestead because I am mentally unwell’ (Florence).
Others voiced friction between their own families and that of their husbands over accusations about the causes of schizophrenia and how the condition should be treated. Most of the women interviewed explained that their husbands were unable to cope with their wives’ symptoms and behaviour and sent them back to their parents’ homestead. However, when Spiwe’s ‘husband’ was sick she cared for him until his death. She said that she wanted to set a good example for her children.
‘…there was hostility between my husband and my family and relatives, and my husband said that he was going to send me back to my parents’ rural home where I was raised. However, my uncles [her mother’s brothers] returned me to the city saying that I should go back to my husband where I got sick (‘enda kwawakaroyiwa’ literally meaning go back to where you were bewitched) (Spiwe).
Evidencing torment, anguish, desperation and poor QOL, Sharon explained that she had attempted suicide by burning herself with paraffin after her ex-husband ignored her pleas to take her to a psychiatric hospital. She said that ‘…ahh I began to realise that I had reached my wits’ end, and in the end, I told him…’ She could not fully explain how she was feeling or her symptoms to her sisters or husband because ‘…I had stopped taking my tablets a long time ago, because of lack of money…’ Sharon’s situation continued for a while with her children witnessing their mother’s deterioration in mental state and desperation for help. Subsequently, her husband divorced her and remarried soon after.
Although most female participants expressed how they were mistreated and separated from their male partners, it is noteworthy that two male participants reported being left by their wives because they had schizophrenia.
‘… his wife decided to leave him saying, ‘I don’t want my husband anymore’, so I think that [action and decision] influenced the children to neglect their father too’ (Joseph’s brother).
‘When his wife left him, we spent the next two years with him struggling with his mental illness…’ (Thomas’ father).
Theme 2: ‘Disability is not inability’ Living with stigma and discrimination
Participants experiences of living with stigma could be grouped into three types: public ridicule and labelling (by employers, health service providers, and the community); feeling ashamed; and discrimination from family members. For example, ridicule ‘…s/he is mad (ibenzi) and crazy (mupengo)’, not being paid, being sacked, isolated, marginalised, exploited, and not being paid rent owed.
Public ridicule and labelling
Most participants’ experience was that initially members of the public would receive them well as an equal until they discovered they had a mental illness. One participant explained that, although he was a qualified motor mechanic, people assumed that because he had schizophrenia, he could not do the job. However, ‘…they get surprised or even jealous once they see your skills, knowledge and success; saying ‘isn’t this the guy with a mental illness and now he’s succeeding’. One thing I wish for is that we are given the same respect as those without a mental illness’ (Godfrey).
Most participants described experiencing discrimination by members of the public because of their schizophrenia diagnosis. Godfrey recounted, ‘…some people have got a wrong idea saying… just leave him alone, he is mad (ibenzi) and crazy (anopenga). When you hear words like that I encourage [myself] not to think about it too much. I just think of myself as a human being like anyone else’.
Whilst Edward described similar experiences of stigma and claimed it was ‘…hundred and twenty percent worse [in society today].’ He had also developed ways of dealing with this:
‘Whenever I hear someone saying to me “you are mad, crazy or he’s insane” [anopenga kana kuti ibenzi] I turn that part, ‘benzi’ (crazy) around and make it into a joke. I turn the ridicule to the vehicle brand ‘Mercedes Benz’ and joke with them saying you are calling me ‘Benz’ implying I am flashy and rich…they cannot afford to buy that kind of car’.
Other participants complained of being looked down upon, dismissed, not being paid or properly paid, and being side-lined whenever people discovered they had schizophrenia. Several participants commented on being discriminated against by their employers, health professionals or fellow workers. Charles explained,
‘I tried to apply and get a job…but once the employer knew about my illness they would sack me Even after explaining to [them] that I have gone for my [treatment] reviews, and was taking my medication, he will just say there is not anymore work. My contracts were terminated, and I left’.
Some participants also reported encounters of intimidation and being taken advantage of because of their condition. Kennedy, who owned a house, explained that tenants had refused to pay him rent for five months ‘… because someone had told them that I had schizophrenia… and paying rent to me was a mistake…’. Stories of participants not getting paid for their work were also common.
‘…discovered that the employers paid me less than what we had agreed. I believe there is always prejudice on people with schizophrenia believing that they cannot perform the job required competently. I now use a motto I saw written somewhere saying ‘disability is not inability’ that’s a motto which I now run with’ (Robert).
Florence described a similar story whereby she would resort to using force to recover her wages when the people she worked for had refused to pay her.
‘Only when some people start making excuses or refuse to pay me for the work, I have done… taking advantage of my mental illness I start to get angry…’ (Florence).
Participants voiced how some health care staff used derogatory language towards them. Phillip claimed he had heard staff state that,
‘…all these ‘mad’ people here [at the rehabilitation centre], have all murdered someone’. I challenged him saying, ‘be careful of accusing patients of what they haven’t done. I did not kill anyone’.
Conversely, a few of the male participants, stated they had not experienced discrimination. Thomas claimed that he had not experienced any stigma or discrimination in his neighbourhood and attributed this to being well known and accepted as someone with schizophrenia who lived in peace with everyone. Thomas explained: ‘I don’t know about other people…I have not been ill-treated nor have I upset anyone in the community. No one has said anything discriminatory or bad towards me’. His father echoed his son’s positive account saying that most people in their neighbourhood knew of Thomas’ struggle with schizophrenia and their interactions with him were thoughtful and respectful. For other participants, discrimination and public stigma affected their sense of self-worth resulting in some of them feeling ashamed and hiding their condition.
‘We hide our condition’: Feeling ashamed
Some participants described how they had resorted to concealing their diagnosis. Others described how they grew up with the stereotype of having a parent with schizophrenia. Moses described how having a diagnosis of schizophrenia and growing up with a father also with schizophrenia brought feelings of shame. This led him to accept his ‘fate’ and the need to take antipsychotic medication for the rest of his life.
‘…as a boy I heard people say, ‘his father is ‘mad’…[and] his father escaped through the window… and he was taken away in handcuffs by the police. So, that stigma…ehh, has remained with me’ (Moses).
Participants revealed feelings of inadequacy emanating from public stigma where they felt they were not treated as normal, or as a second-class citizen incapable of doing things. One participant who described himself as a football player explained his experience saying,
‘…the main issue is that… in society you feel like you are not welcome…there is nothing you could do and be recognised as normal. Hence, [I] want to get away from this area where [I am] well known because of the stigma which makes me want to run away to a place where [I am] not known as a footballer…’ (Edward).
Whereas some participants told of how they had resorted to hiding their condition, others were willing to share their experiences about the discrimination they faced.
Experiencing stigma and discrimination from family members
Participants also revealed that they had experienced incidences of stigma, humiliation and discrimination from family members ‘mhuri’ and relatives ‘hama’. Five participants, Moses, Sharon, Spiwe, Lizzy and Florence gave accounts of how they had either kept their diagnosis of schizophrenia from relatives, had been ostracized and rejected by relatives or verbally abused by a family member. Florence, a divorced mother whose brother also had schizophrenia, described her tumultuous relationship with her mother. She said that although she got along well with her siblings and other relatives, her mother often accused her of being lazy, useless (simbe in Shona) and wished that she would die. She explained,
‘Someone I don’t get along well with, particularly when I am unwell, is my mother. [This is] because mum… sometimes her words she says to me…she even says die (ifa). She says that I am useless (simbe). If I die, she will bury me at the [local cemetery]. The words she says are so strong and hurtful. Sometimes, I think why doesn’t God take me, so I can rest as a spirit’ (Florence).
Florence and her sister who was also present during the interview, went on to describe how Florence runs away from home at times in frustration and desperation to escape from her mother’s incessant derogatory comments. Moses revealed that his father who had schizophrenia and later died from a stroke, had experienced stigma from his brothers growing up. This may have influenced his parents to keep his diagnosis of schizophrenia a secret from relatives.
‘Consequently, they kept it [diagnosis of schizophrenia] a secret because my father didn’t want other relatives and friends to know that I too was living with the same diagnosis. It could be the [negative] treatment he received from his brothers, that made him decided to keep it a secret. That’s why it has taken me time to come out openly about my diagnosis and life with schizophrenia’ (Moses).
Lizzy went on to narrate how her children and relatives did not want to be burdened with the cost of her stay at the rehabilitation home. Her children wanted her discharged to her rural home instead of the city, which Lizzy didn’t think was the best option as this would confine her to the rural area where she would have poor access to treatment and less opportunities to see her grandchildren.
‘When my family are told of my condition, they will not treat me well, they will start to treat me badly. Especially, the twin girls, will insist that once I am discharged, I should go and live in the rural home, which I don’t want to do’ (Lizzy).
Theme 3: Limited and variable access to treatment and support
Stories depicting limited and variable access to treatment and support are reported within three subthemes: expensive and inconsistent availability of medications; benefits and side effects of medications; and lack of counselling.
Expensive and inconsistent availability of medications
Every participant described the difficulties they encountered in getting their prescribed antipsychotic medications due to inconsistent availability through the public hospital where they were free, and their lack of money to afford to buy them privately. Although most participants expected to get their prescribed antipsychotic medications from public hospital pharmacies, the medications were often out of stock which meant that they had to purchase them elsewhere. However, most of the time they did not have the money to buy them; or other pharmacies did not always stock them, assuming that people would get medications for free from public hospital pharmacies. Charles expressed his frustration during the interview saying,
‘…that’s where it becomes difficult for us because even if you go to the private pharmacy the medication is expensive…and [we] don’t have the money... And [even if we do] make sure that the medication…is available’.
When asked about any suggestions for improving mental health service delivery, Edward said that he wished ‘…these things [medication] should be made readily available… alternatively the government, should subsidise [them]…’ as he could not ‘…afford the medications without [his] employer chipping in to help...’ and had to buy them outside government pharmacies.
Some female participants expressed similar frustrations with the challenges of getting medication saying that they had to ask their partners for money. Lizzy, a married woman, at the time resident at a rehabilitation home, explained that she was forced to constantly ask (in Shona ‘achingonetswa zvokuzonzi tipe mari’) her husband for money to pay for her prescription from the private chemist.
‘… [at the clinic] they would write you a prescription, that requires money. Eh yes and your husband usually doesn’t have the money to give you all the time…he feels that you are harassing him saying give me money, give me money.’ (Lizzy).
Although, participants’ accounts revealed the difficulties in obtaining and affording prescribed antipsychotic medications, they shared frankly, their experiences of the benefits of taking their medications and some of the side-effects they had to deal with which affected the way they felt and were able to function.
Benefits and side-effects of medications
Although participants reported challenges in obtaining antipsychotic medications, many stated that they found the medication helpful in reducing their symptoms and improving sleep.
‘…they [tablets] help with sleeping, after working all day I come home feeling tired. Once I get home, I take my tablets have something to eat and then go to bed. The following morning, I wake up and go to work…they really help me.’ (Obert).
Others like Spiwe, said that continuing to take medications helped them live normal lives: ‘… to live a normal life, like everybody else and the medication might end up being reduced or stopped…preventing me from relapsing’. In addition, half of the participants were prescribed an antipsychotic injection, primarily fluphenazine (modecate).
Several participants expressed concern about experiencing side effects and not knowing how to manage them. Participants revealed that increased appetite and tiredness affected their QOL. Only three participants (all men) did not express concerns about any side effects from antipsychotic medication. Spiwe described how side effects such as excessive sleeping and sedation can affect productivity that can also bring misunderstandings with family members who may expect the person to help with chores. However, despite the side effects Spiwe stated that ‘…we must take the issue of our medication seriously so that we can look after ourselves. [Some] don’t take their medication properly, which they should to stay well...’
Whilst participants acknowledged there are benefits to taking antipsychotic medications, they also wanted other forms of supportive intervention.
‘We need counselling’
Several participants were concerned about the lack of counselling services to help them with their symptoms of schizophrenia. They wanted these services to be made available in future as they regarded them as beneficial to their mental health and well-being. Kennedy claimed, ‘For me the thing that is required the most is counselling’. Charles revealed that counselling sessions that had previously been available had ceased.
‘…occasionally we attend counselling sessions at the hospital. The counselling sessions are designed to help and teach us strategies to cope with our lives. We used to attend the sessions, but they stopped a long time ago…’ (Charles).
Edward described the lack of alternative intervention to medication saying,
‘the failures … were because [of poor] structures, [and] the bureaucracy and the way things are at present. The psychiatric doctor should refer you to other health professionals such as psychologists, occupational therapists…but they do not’.
Some participants described a lack of opportunities for rehabilitation where participants could be taught vocational skills like welding, like they did in the past. Some of the education and skills training were designed to help participants integrate into society and help their families during the recovery process. Having a single facility offering a mental health rehabilitation program for residents was described as a barrier to offering other psychosocial programs.
‘…in the past, my rehabilitation program included learning about gardening… and refresher lessons on illness education to help us understand our status as people suffering from schizophrenia…these opportunities do not exist…’ (Charles).
‘… one rehabilitation centre in Harare. Our wish is that they should build more like that one… and it should be within reach …’ (Edward).
Participants expressed a desire for health promotion and illness education about the management of schizophrenia to be extended to families and members of society. Charles stated, ‘… society must be informed that if a person has a mental illness, they are still a person just like anyone else in that society’.