The number of completed FGDs (
n = 12) and interviews (
n = 22) by type of informant (relative, professional, healer, informant), in each site is shown in Table
1. The terms used to refer to madness are listed in Table
2. The most prominent themes relevant to our research questions and the number of focus groups and interviews in which they were mentioned, are shown in Table
3.
Table 2
Terms for madness
• gunam marattam (a change in behavior that is not acceptable or is different from usual behaviours) • loosu (a colloquial term-possibly from the English word, loose-meaning can range from someone who is stupid to someone who is mentally ill.) • mad • manaa kolaaru (a problem with the mind) • manaa kulapam/kozhapum (confusion in the mind) • manaa maarudhal (a change of mind in decisions related to any activity) • manaa nalam baathika pattavar (a person whose mental wellness has been affected-often used in context of a precipitating event) • manaa nellai seri illathavar (someone whose state of mind is not alright) • manaa noi (mental illness) • manaa noiali (mentally ill) • manasu kattupai (mental irritation) • manasu seri illathevur (one who is mentally not well) • manavalarchi kundriyavar (one who’s growth of mind is retarded)b • mental • mentally affected • moolai valarchi kummi (poor growth in mental functioning)b • moolai valarchi illathavar (someone who does not have adequate growth of the mind)b • narambhu thalarchi (“nerve weakness,” a term preferable to one that indicates mental illness). • noi vandhirichi (one who is affected by an illness) • paithiyam (colloquial term for being mad/crazy) • pazhuthugal (word most commonly used to imply repairs in machinery. In this context it could mean a reference to the mind being in “repair.”) • psycho (colloquial term) | • abisinwin (going mad after giving birth) • afise (externally induced act or predicament) • aisan (sickness/illness of the brain) • alanganna (a person with odd/abnormal behaviour) • alarun opolo (person with mental disease) • arun apolo (brain sickness) • asinwin (insane/madness) • crazy • didinrin/odoyo (imbecile/fool) • elesimirin (mentally retarded) • mad • ode ori (hunter of the head) • oku oru (in the dead of night) • schizophrenia • iwin (spirit creature) • siwin (being mildly insane) • warapa (epilepsy) • were (mad person/madness) • were kannakanna (mad, psychotic) • were onigbo (madness in which the person wants to be isolated) • ya were tan (gone completely mad) | • altered state • anxiety • attacks • breaking down • challenged • crack up • crazy • curious • demonic possession • depression • dunce • dysfunctional • emotional problem • foolish • going out of mind • gone off • loco • lose their minds • mad • madman • madness • mental disorder • mental problem • mentally sick • mentally unstable • nerves gone bad • not whole within • oppression • psychological problem • schizophrenia • sickness • spiritual problem • spiritually affected • spiritually disturbed/spiritual disturbance • strange • stressed • trip off • eh bête |
Table 3
Frequency of responses about Typical Signs, Causes, and Responses & Treatment for madness in each site
Typical signs |
Somatic | disturbances in sleep, appetite & reports of physical problems | 10 | 10 % | 6 | 6 % | 12 | 9 % | 28 | 8 % |
Behavioural | Decline in function |
not functioning, being unable to work, poor self care | 11 | 11 % | 16 | 16 % | 17 | 12 % | 44 | 13 % |
Isolative |
withdrawing from interaction | 6 | 6 % | 9 | 9 % | 8 | 6 % | 23 | 7 % |
Self-harm |
deliberately harming oneself, attempting suicide | 4 | 4 % | 4 | 4 % | 6 | 4 % | 14 | 4 % |
Visibly disturbed (1) |
violent, assaultive behaviours | 19 | 19 % | 26 | 25 % | 19 | 13 % | 64 | 19 % |
Visibly disturbed (2) |
being loud, running around, exposing, collecting rubbish | 30 | 29 % | 23 | 23 % | 42 | 30 % | 95 | 28 % |
Psychological | loss of interest, sadness, guilt, feeling angry, hostile, etc. | 7 | 7 % | 3 | 3 % | 8 | 6 % | 18 | 5 % |
Suspicions |
persecutions, referential delusions | 7 | 7 % | 3 | 3 % | 2 | 1 % | 12 | 3 % |
Thoughts & cognition |
bombarded with thoughts, thought of suicide/killing, problems with memory, concentration | 4 | 4 % | 1 | 1 % | 6 | 4 % | 11 | 3 % |
Hallucinations |
hearing voices of persons who are not present | 4 | 4 % | 11 | 11 % | 21 | 15 % | 36 | 10 % |
| Total | 102 | 100 % | 102 | 100 % | 141 | 100 % | 345 | 100 % |
Causes | Don’t know / Other | 4 | 6 % | 2 | 2 % | 4 | 4 % | 11 | 4 % |
Spiritual/Supernatural | 26 | 38 % | 24 | 25 % | 57 | 46 % | 107 | 37 % |
Psychological |
worry, thinking too much, responses to life events identified as “psychological” | 9 | 13 % | 11 | 11 % | 5 | 4 % | 25 | 9 % |
Social |
individual’s social environment and social experiences, including family relationships, childhood experiences etc. | 12 | 18 % | 17 | 18 % | 24 | 19 % | 53 | 18 % |
Substance use | 1 | 1 % | 16 | 16 % | 13 | 10 % | 30 | 10 % |
Biological (including genetic) | 16 | 24 % | 27 | 28 % | 20 | 16 % | 63 | 22 % |
| Total | 68 | 100 % | 97 | 100 % | 124 | 100 % | 289 | 100 % |
Responses & treatment | Folk | 57 | 45 % | 73 | 52 % | 130 | 53 % | 260 | 51 % |
Professional | 68 | 53 % | 46 | 33 % | 74 | 30 % | 188 | 37 % |
Popular | 0 | 0 % | 21 | 15 % | 39 | 16 % | 60 | 12 % |
Total | 125 | 100 % | 140 | 100 % | 243 | 100 % | 508 | 100 % |
Terms
All sites used a wide range of terms for madness (Table
2), many of which had as their root words that meant mad, mind, brain or mental. All sites also associated madness with cognitive impairment and used terms such as
manavalarchi kundriyavar (Chengalpet),
didinrin (Ibadan) and dunce or fool (Tunapuna-Piarco). Informants in Ibadan and Tunapuna-Piarco used terms that implied external forces were responsible for a person’s madness, e.g.,
afise (externally induced predicament, Ibadan) and
spiritually disturbed (Tunapuna-Piarco). In Chengalpet and Tunapuna-Piarco, informants also used terms that may have been less stigmatizing, e.g.,
narambhu thalarchi (nerve weakness, Chengalpet) and
nerves gone bad (Tunapuna-Piarco). Informants in Chengalpet and Tunapuna-Piarco used colloquial, somewhat pejorative terms for persons who are identified as mad, e.g.,
loosu and
loco, respectively. Finally, it was only in Ibadan that an informant reported a term (
abisinwin) that referred to post-natal madness, specifically.
Typical signs
Visible disturbance
In all of the sites, visibly disturbed behaviours were the most frequently reported signs of madness (see Table
3). These behaviours took many forms.
Wandering & running away
Wandering and running away were reported in all of the sites. The following statements are illustrative: “My father used to always run out of my home…Once he was missing for two days” (caregiver, Chengalpet); “They can be found at the marketplace, on the highway, under the bridge. The hostile ones are the ones we see roaming the streets and marketplace begging for money” (healer, Ibadan); “One day he start to rant and rave…he running and he screaming and he want to mash up things, ‘cause he hearing voices” (caregiver, Tunapuna-Piarco).
Odd behaviour
Odd behaviours, in general, were also considered indicative of madness in all sites, although not consistently. Laughing to oneself or laughing inappropriately was reported in Ibadan and Chengalpet, but not in Tunapuna-Piarco. In contrast, although informants in Ibadan and Tunapuna-Piarco believed that going about naked was a sign of madness, informants in Chengalpet did not associate this with madness. One of the most eloquent statements about odd behaviour was: “But you know, a lot of people they use a vagrant as their reference point for madness. So if you’re on the road, you’re half-naked or your clothes burst down, you’re eating from a dustbin, you’re very dirty or unkempt and so forth, in a lot of the people’s mind that is what madness is” (health care provider, Tunapuna-Piarco).
Violence and aggression
Reports of disturbed behaviour were dominated by accounts of violence and aggression, although the levels of violence reported appeared to differ across the sites. In Chengalpet, informants mostly talked about anger and fighting or hitting people, e.g., “He gets very angry, loses temper…We are always scared” (caregiver). In Tunapuna-Piarco, a health care provider reported, “Some patients are very…disruptive in the community. They could be violent…They pelt stones and [treat] people roughly.” In Ibadan, however, descriptions of violence were more extreme, e.g., “A child should not be kept in the same place with a mad person. [If you go] out to wash cloth or you want to go and fetch water and you [leave] a small child, a mad person can decide to throw the child in the river if the river is close to them” (caregiver); and, a healer recounted how a young man with madness got into a quarrel with his mother and “… [pushed her] head in a cooking pot on the fire. Before the mother got to the hospital she died.”
Self-harm
Although self-harm, suicide in particular, is often cited as being relatively common among persons with psychosis in many settings [
29‐
32], relatively few informants in the sites linked such behaviour with madness. In Chengalpet, one caregiver and one health care provider mentioned suicide. In Ibadan it was only mentioned in one FGD with caregivers, while in Tunapuna-Piarco suicide was mentioned in one of the caregiver FGDs and in three interviews with healers.
Decline in function
An obvious decline in function was considered a sign of madness in all of the sites.
Poor hygiene
Poor hygiene was reported in all of the sites. The following accounts by caregivers are illustrative. “He might …. decide not to take his bath, change his cloth, and brush his teeth and forget to trim the nails” (Ibadan). “He’s a boy [who] always used to keep himself clean. So, when he started being untidy everybody who knows him knows something wrong” (Tunapuna-Piarco). “My son, does not take bath [and] does not brush his teeth” (Chengalpet).
Not working or working poorly was associated with madness in all of the sites, especially when considering reports by caregivers. For example: “My son … doesn’t do any work by himself. Only when we ask him to do he will do” (Chengalpet); “Rather than go to his place of work or school, he will leave the house and hide somewhere” (Ibadan); and, “With that schizophrenia thing he doesn’t want to do nothing” (Tunapuna-Piarco). As suggested by a provider in Chengalpet, being “lazy” might reflect the effects of medication, “After treatment they say all is fine. He is not violent anymore which is good but [he] does not do any work. Now when we visit the family, they are telling, ‘He is lazy like a buffalo.’
Isolative behaviours
Isolative behaviours were reported in all the sites. For example, a caregiver in Chengalpet stated, “He doesn’t even interact with others,” while healers in Ibadan and Tunapuna-Piarco stated, respectively, “There are some that will not say anything, they will be mute like a stream,” and, “They withdraw from life.”
Causes
Informants mentioned a wide range of causes, covering all the domains identified in previous research: supernatural, hereditary (genetic), biological, substance use and psychosocial.
Supernatural
Virtually all of the informants in all of the sites mentioned that they or their patients attributed madness to supernatural causes, e.g., black magic, casting of spells, or demonic possession. In Chengalpet, black magic was the most often cited supernatural explanation, e.g., “It’s all black magic. They do it purposefully to destroy the next generation of the family” (healer). In Ibadan, informants spoke about the casting of spells, e.g., “If a child is meant to be great, the evil people are likely to a cast spell on him to hinder him from attaining his goal” (caregiver). Informants in Tunapuna-Piarco also expressed beliefs that madness was the result of being cursed: “People would want to say, is it obeah, is it voodoo, is it black magic?” (healer).
However, psychosis was not always explained as the result of someone invoking supernatural forces as a punishment of an individual or a family. Individuals could also be susceptible to possession by wandering spirits. For example, “It can happen to someone while walking on the street, most especially the pregnant women that are usually warned not to walk in the midday when the sun is high or in the midnight because of those roaming evil spirits” (healer, Ibadan). A healer in Tunapuna-Piarco gave a more complex account, suggesting that psychological states may leave a person open to being possessed by evil spirits: “What we have discovered is that a person moves from the confused state to…the obsessed to the depressed…state. And while that is happening that is really making room for an infiltration of evil powers, evil spirits…We understand from the word of God that Satan is always waiting for an opportunity.”
Psychological and social
Psychological and social factors were considered causes of madness in all of the sites and accounted for about a quarter of all causal attributions. The most common of these factors, at least in Ibadan and Chengalpet, concerned overloading the brain, e.g., rumination or “thinking too much”: “If someone thinks too much she will run mad” (caregiver, Ibadan), and, “They must think everything about life. But they have one thought and thinking the same. They participate less and forget about happiness in life” (caregiver, Chengalpet).
Family problems were reported as factors in all three sites and thwarted marriage wishes, tensions from polygamous marriages, and being forced into an unwanted marriage were factors reported in Chengalpet, Ibadan and Tunapuna-Piarco, respectively.
Among the informants in Chengalpet, “shock” was frequently cited as a risk factor, although the nature of shock was not specified. In Trinidad, two informants spoke of traumatic experiences that lead to madness, e.g., “Certain traumatic experiences will be dormant and over the years the person will try to suppress that, but when they see anything that cause a flashback…they will lose control” (healer). Informants in Ibadan did not report trauma as a factor. Instead, they reported disappointment, frustration, and marital problems. It was only in Tunapuna-Piarco that informants mentioned sexual, physical, and emotional abuse, specifically. For example, a caregiver in that site reported, “People who suffer with mental…sometimes they grow with abuse from little children…they’ve been abused, molested. And you growing up with that with your father – your family molest you and every day you living there and seeing them, how you – that would cause a problem mentally – right, psychologically it affecting your brains.”
Biological
In all of the sites, familial factors – often vaguely expressed in terms of inheritance – were cited frequently. For example, a healer in Ibadan stated, “If an affected person gave birth to four children, she might be lucky to have two affected children and two normal children. If she gave birth to three children, two might be affected leaving just one free of the illness,” while a caregiver in Trinidad stated, “And it so happened that her brother [was] kind of sick with his brains; so like he inherit[ed] something.” In Chengalpet, genetic attributions were less specific. A key informant suggested that mental illness might result when close relatives marry, and a caregiver observed, “In her family there are several people affected.”
Head or brain injuries were reported in all of the sites as causes of madness, as were fevers, untreated infections and wounds, chemical imbalances in the brain, and brain damage as the result of malnutrition. For example, a health care provider in Ibadan stated, “If somebody has a wound and it is not properly taken care of it might be infected with tetanus thereby leading to brain disorder,” while a healer in that site reported, “If someone has an injury and they do not treat it early, some diseases can come in. It can cause psychosis.”
Substance use
In Ibadan and, to a lesser extent, Tunapuna-Piarco, some informants attributed madness to substance use, e.g., cannabis, cocaine, and heroin, e.g., “Another common cause is drug abuse, those that smokes Indian hemp, heroin, cocaine and other harmful drugs” (health care provider, Ibadan); and, “My son was going to school and he started smoking marijuana. And then he got sick and he went to St. Ann’s [the psychiatric hospital]. And then he went to cocaine” (caregiver, Tunapuna-Piarco). In Chengalpet, only one care provider mentioned drug use, and only one key informant cited alcohol abuse as causes of madness.
Multiple causes
Many informants cited multiple causes of madness. A healer in Chengalpet not only attributed madness to black magic and evil spirits but also men being driven mad by the infidelity of women. Similarly, a spiritual healer in Tunapuna-Piarco mentioned several supernatural causes of madness, but also spoke of sexual abuse in childhood and being forced into unwanted marriages as psychosocial causes of madness. Members of an FGD of healers in Ibadan spoke of womanizing and thinking too much as causes. Caregivers in Ibadan also cited eating unwholesome foods, “ancestral curse,” and hereditary. One caregiver stated, “Psychosis can be caused by many things.” while another caregiver in the same FGD agreed. Interestingly, neither seemed to give more weight to one cause or another.
There was little evidence that the various causes had multiplicative effects, although one spiritual healer in Tunapuna-Piarco believed that supernatural causes functioned in the presence of psychological vulnerability: “Satan is always waiting for…opportunities to destroy individuals and he can only do so when the person is weak mentally.”
Responses to madness
Our coding scheme for responses to madness followed Kleinman’s model of health care systems [
5] and included the following categories: professional, folk and popular, with several sub-categories in each. Our findings suggest that responses are best described by narratives of dynamic help-seeking. That is, initial responses do not necessary predict responses to subsequent episodes, which appear to be varied and based on pragmatic issues.
The most frequent response to madness was to seek help in the folk sector, which in all three sites was comprised of spiritual and traditional healers: Hindu temples, Muslim shrines, numerous small Christian churches in Chengalpet; spiritual healers associated numerous churches and traditional healers who employ herbs, roots, oils and sacrifices in Ibadan; and, in Tunapuna-Piarco, spiritual healers from a wide range of religions, as well as practitioners of
obeah who perform rituals to counteract curses and spells (Table
3) [
1].
Seeking professional help was the next most frequent response. In Chengalpet this meant: a) going to a variety of hospitals and private psychiatrists in the catchment area or in the nearby city of Chennai; b) attending primary care centers that participate in the National District Mental Health Program; or, c) seeking care in psychiatric clinics that are operated by two non-governmental organizations. In Ibadan, there are no professional services within the catchment areas and care may be sought in one of three hospitals located elsewhere in the city. In Tunapuna-Piarco, two primary care centers provide regular psychiatric clinics. In addition, one private and one public hospital offer mental health services. The main psychiatric hospital in Trinidad is located outside of the catchment area but it provides services to residents of Tunapuna-Piarco [
1].
Respondents infrequently described efforts to manage madness within the family or the popular sector. This may reflect the nature of questions asked, which probably made respondents think in terms of external agencies. However, caregivers in Ibadan reported chaining as a first step, e.g., “Once it is suspected that somebody has this sickness, call the men in the house to chain the patient, after that barb the hair then lock him up.” At the same time, caregivers urged, “Anybody that has this problem should be showered with care from people around them.” In contrast to Ibadan, where informants spoke of prayer, fasting and the use of herbs and oils in the context of seeking help in churches or from traditional healers, caregivers in Tunapuna-Piarco spoke of using these methods in more personal ways, e.g., “I does pray a lot…Every 1 o’clock, 2 o’clock at night I does get up and say my Psalms and pray for him. And I think that helps a lot.” The transcripts do not allow us to determine whether this contrast between the sites represents differences in behaviours or differences in styles of reporting.
Reports about how the early stages of madness were managed within the popular sector were absent in Chengalpet, but there is a need for caution: it is possible this topic was not adequately addressed in the focus group discussions. Furthermore, since a majority of cases in Chengalpet had not received biomedical treatment for many years, it seems logical to conclude that families were managing most care on their own.
This summary of the specific responses to madness does not, however, fully convey caregivers’ complex narratives of what they did or what they believed should be done in response to the emergence of madness in a family member. In Chengalpet, caregivers described how they had for years and, at great expense, sought treatment from spiritual healers, e.g., “I took to all places, Sir. I lost all jewels and cash for those things and don’t have even a single penny in hand.” As the multiple spiritual treatments failed many caregivers came to rely on “English medicine” (i.e., injections and tablets of antipsychotics): “Want to take them to hospital only, Sir. It gets cured only by taking to hospital and by taking tablets.” This does not tell the whole story, however. Caregivers also believed that medicines would not work if madness was due to black magic, e.g., “If it is black magic then when we go to the temple and pray it will be alright. If that doesn’t cure the illness then it means that there is some problem in the body.”
In Ibadan, where we held one caregiver focus group in a church and one in University College Hospital, reports varied about responses to madness. Members of the church group expressed skepticism or disbelief in the effectiveness of biomedicine, e.g., “It is not all madness that injection can treat.” Another caregiver asserted, “In the olden days everybody knows they didn’t take such problem to the hospital… [they went to] traditional healers and church for treatment.” Nevertheless, some informants suggested that going to the hospital was a good idea because, for example, “[the patient should be] given an injection so that he can sleep and his brain be settled.”
In contrast, caregivers in the focus group at University College Hospital believed in biomedicine and cautioned against believing the claims of spiritual and traditional healers: “When you are not well informed you make a lot of mistakes. [In the churches] they will tell you going to the hospital is a mere waste of time. You will just be going from place to place where they will be extorting money from you. It is a foolish step caused by ignorance. But if one is lucky enough to discover the hospital route on time one will get solution.” Other caregivers in the group described how they had sought spiritual treatment but that the ill family member kept relapsing: “The first step we took was to go to a prayer mountain [an apostolic or evangelical church], but the treatment relapsed. When we are there she will stabilize but as soon as we get back to the house the sickness will increase. There was a day we went to [another prayer mountain and] we noticed that she was a little bit better but as soon as we got home the sickness started again…We were later referred to UCH [University College Hospital] here in Ibadan.” The views of caregivers in this group might be summarized by: “If you can go directly to the hospital there will be a quick breakthrough…The best step is the hospital.”
The caregiver focus groups in Tunapuna-Piarco also depicted complex accounts of responses to madness. One informant offered, “I went to the clinic first and then…carried him to church. Then I decided that I would get somebody to clean the house spiritually.” Other caregivers reported using herbs, fasting, bathing the ill member with oils, prayer, and seeking the help of “spiritual people.” At the same time, some caregivers reported reliance on biomedical care and frequent hospitalization, although this may be, at least in part, an artifact of the focus groups being held in two primary care clinics that provided regular specialist psychiatric care. Nevertheless, the evidence of reliance on prayer, herbal remedies, and biomedical care indicates that caregivers resorted to multiple treatment strategies.