A total of 20 FGDs were conducted, one with females and one with males in each of the ten districts in the Kashmir Valley; 186 participants aged between 18 and 80 years of age attended. 95 men, median age 40 years, interquartile range (IQR): 27–48 years and 91 women, median age 40 years, IQR: 32–50 years. Results are presented under the main emergent themes. Panel 1 highlights the main themes with illustrative quotations.
Recognised presentation of mental illness
The presentation of someone suffering from ‘pareshani’ or psychological distress was described in terms of physical, cognitive, social and behavioural characteristics. Commonly mentioned physical symptoms included; facial expressions reflecting sadness, hopelessness and ‘tension’, heart palpitations, blood pressure, ‘ghabrahat’ (Kashmiri term to describe nervousness), changed sleeping patterns, restlessness, weakness, crying always and weeping. Cognitive symptoms discussed included features of dissociation, mood fluctuations and instability, forgetfulness, inability to make decisions, ‘physically there but mentally somewhere else’, and ‘in his own mind with his thoughts’, excessive thinking, poor attention or concentration, lack of tolerance or patience, ‘mind not functioning well’. The social presentation of someone with psychological distress was described in terms of notable changes in social interaction, and changes in verbal communication. Symptoms discussed included social withdrawal and isolation, a change in speech – talking more or talking less than usual, speech content described as irrelevant or inappropriate, Fanafilla (the Kashmiri term to describe the lack of social boundaries and self-awareness that leads to culturally inappropriate behaviour, and sometimes used for someone who is spiritually connected to divine power) inability to listen to others, loss of interest in life (including in their family), and a lack of tolerance and patience with others. Behavioural presentations discussed related to expressions of aggression and substance use. Anger and aggression were discussed in all focus groups with references to both verbal and physical aggression. The inability to carry out tasks related to daily life and the act of roaming or aimless wandering were other commonly mentioned behavioural presentations.
Symptoms of psychological distress mentioned in the focus group discussions were cross-checked with symptoms listed in the HSCL-25 and HTQ-16. Commonly mentioned symptoms from focus group discussions present in one or more of the screening tools included nervousness, heart palpitations, restlessness, crying easily, sadness, hopelessness, thinking too much, loss of interest in things, changed sleeping patterns, forgetfulness, poor attention and concentration, inability to make decisions, aggression and anger, social withdrawal and isolation,
Panel 1: Illustrative quotations from seven emerging themes on mental health in the Kashmir Valley
Presentation of psychological distress|
su tchu har waqte mayues aasan taemis tchaeni aasan kah khushi bayei chu su alag thalag yecaan behuen beyi ne kaensi sith kath ne keh nea kah kaem ne yaecaan karun sirf dapaan bea baemha bea vucheha ne kaensi huend buuth nea bayee baemha aenigaetis be nea hasa vucheha gash te keheen ye chu aemis yaemis ye depression chu aasan.
He is always sad, not happy at all, wants to sit alone, doesn’t talk, dislikes doing anything, doesn’t like to have anyone around him and wants to sit in darkness so that he will not see the light. All this happens to the person who is suffering from depression. 46-year-old female participant, Pulwama
Beyi gaye yeim haalat aezik yemaev haalaatav te oen vaariyaa keh vunkaes chuni haekaan insaan taeli aes ceer nacaan vacaan baaki cheez vunkaes chuni haekaan bache agar naebaer naeri, pareshaan che rozaan, paetii paetii chu paevaan aemis pakun khabar cha thaf ma yeyaes keh ma gachi baek cheez chu vunkaes chuni zindagi paeth barosae bae yoeri dravuus oeri yemaa vapas teith gayee zyadi yaeth saeni kasheeri manz haalat taem te oen vaariyaa dabaav.
The present conditions [Socio-political conflict] have affected our life. There was a time when people used to enjoy at late hours. Today, if a child goes outside the house, parents remain tense/worried and look for him all the time as there is uncertainty and they think that he might get arrested or some other unlucky incident may happen to him. Due to uncertain conditions in Kashmir, a person does not know whether he will come back to home or not after going out of the house and this caused lot of stress/tension. . 40-year-old female participant, Pulwama
….yemis zaheni takleef aesi jinabali, temis tche aksar rozan insaan douryi
Distance is maintained from the person who has mental illness. 55-year-old male participant, Srinagar
... Taemis bechaeris tcheni paesh yevaan theek tareeq keh... niche nazree tchis vuchaan
...That poor person is not treated well... Seen as inferior. 27-year- old female participant, Kulgam.
...mea basaan avoide tche karaan aemis yaemis ye zaheni takleef aasi
...I feel the person with the mental health problem is being avoided. 40-year-old female participant, Pulwama,
Help seeking practices
Pehlay peer kay pass laejatay hain aksar peer kay pass laejatay hain us kae baad doctor kay pass laejatay hain.
First they are taken to a spiritual healer/peer, often taken to a peer and after that they are taken to the doctor. 27-year-old female participant, Baramulla
Tche na dapaan kah Doctor tchu tuethti, tensioni, yus tensionas wataan tchu, su tchu dawah wavah dewaan, ghacaan tche faraq, wini tchu tension tchu asaan su tchu oeruk yoeruk wanaan, temis tche wanan yi nimoen Doctoras Kum se kum gacaes faraq|
We say that there is a kind of ‘tensionee’ doctor who takes care of tension, he prescribes medicine and the person improves. When a person is in tension he can talk
nonsense, then we tell them to take him to a doctor; at least he gets better. 45-year-old female participant, Srinagar
Barriers to accessing care and treatment
Jo loag gareeb hongay jis k pass koi guzaara nahin hoga vo aesay he chod daetay sonchtae hain ye apnay haal pae shayad mast hai tou rehnay dou hogaya theek tou khud he ho jaega nahin hogaya tou dekhaengay vo nahin karatay iska koi ilaj aesay b bohat loag hai..
People who are poor and cannot afford [treatment], leave such persons [persons with mental health problems] on their own, thinking that they will get better by themselves, or else we see, many people don’t even seek treatment [for such persons]. 18-year-old female participant, Baramulla
Mental hospital hai lekin mental hospital pura throughout state me dou  he hai ya tou jammu me hai ya Srinagar me hai tou vahan pae ghareeb logun ka sources he nahi hai pohanchnae kay.
There is the mental hospital but there [are] only two mental hospitals in the whole state. One is in Jammu and the other in Srinagar. To reach this place is not affordable. 60-year-old male participant, Anantnag
Perceptions of the effectiveness of treatment received
Eyess chhe wuchaan, bemaar chhe peeran nishh gachhan rozaan petmou paancxou, sheyou, ya dahou veryou petth. Dahou veryou patte chee tumann henzz mushkilaat badaan, tuman henzz haalat chhe waarya kharaab gachhan, patte chhe tuman ellaaj karun wariya mushkil gachhan
What we see, the patients we observe they have been going to the faith healer from the last five years, six years or ten years. After ten years there problem has increased, there conditions worsens and it is very difficult to give them treatment. 20-year-old male participant, Bandipora
Tum lukhh yumm aesse chhe ellaj karan chhenn paane zaana zehni sehatt kya gouv. Tuman Daktoran (khaas daktor) chhen pattah kya ellaj pazze eithenn bemaaran Karunn
The doctors involved (specialist) do not know what treatment should be given to such patients.45-year-old-male participant, Kupwara
Perceived mental health service needs
Koi program hota har dusray teesray din yahan logun ko samjatay, Agar koi clinic he hota vo har ek ko maheenay me ek din kisi din jamah karkay kuch baat samjatay.
There should be some programme every second or third day to make people aware. If there was a clinic here then it would gather and raise awareness among people. 27-year-old female participant, Anantnag.
Perceived causative factors associated with psychological distress or ‘pareshani’
Perceived causative factors associated with poor mental health outcomes included physical and political insecurity, socio-cultural factors, socio-economic factors, physical, environmental and spiritual factors. Insecurity and events related to the ‘Halaat’ or the ‘situation’ of protracted conflict in the Kashmir Valley were discussed at length in all focus groups as a cause of poor mental health. Specific traumatic events were mentioned such as the death or disappearance of a loved one and exposure to cross firing, but it was also the ‘feeling of insecurity’ that was discussed, ‘it [the potential for insecurity] is always on our mind’. Socio-cultural factors included those related to family conflict or family ‘tension’, stress associated with the inability to meet socio-cultural expectations such as marriage in early adulthood and the dowry system, the breakdown of socio-cultural norms, interpersonal conflict and for younger Kashmiri’s the pressures associated with familial and societal expectations related to academic performance. Interestingly, when suicide was mentioned in focus group discussions it was in the context of the pressures on young people to ‘have good [academic] results’. Unemployment was the most commonly discussed socio-economic factor perceived to have a causative association with poor mental health outcomes. Poverty, the cost of living, inability to provide for the family and lack of job security were also commonly discussed. Perceived physical causes of poor mental health related directly to illness, ‘someone who has poor physical health will also have problem in the head – distress’ or poor health in the family. In women’s focus groups infertility was discussed as a cause of psychological distress and poor mental health. Earthquakes and floods were the most discussed environmental causes of poor mental health, both of which lead to loss of loved ones, loss of property and feelings of ‘terror’ and ‘fear’. The physical isolation that occurs during the winter season due to heavy snowfall was also perceived to be a cause of psychological distress. Spiritual causes of psychological distress were predominantly attributed to a djinn, ‘tasruf’ (possession) or fairies (pari). Other spiritual causes that were discussed included ‘Nazar’ (the evil eye), a curse put on one person by another. An ‘act of God’ was also indicated as a possible source of mental illness; ‘this can be from the Almighty’.
Community perceptions of mental illness
When discussing how members of the community perceive an individual with symptoms of mental illness emphasis was placed on the stigma associated with mental illness. This included stigma associated with symptoms, treatment seeking and more broadly societal stigma. When someone displays recognisable symptoms of mental illness the stigma associated with the symptoms is evident in the reported response of members of the community towards these people; ‘everyone does not treat them well’, ‘we don’t behave well with them’, ‘some ignore them, don’t think about them, avoid them’, ‘some taunt, tease them, make fun of them’. Stigma associated with treatment seeking was associated with community perceptions that someone is ‘paagal’ (crazy), ‘if we take them to a tension doctor people will think they are mad and call them ‘paagal’, ‘people are afraid of going or taking a person to the mental hospital because it is still called as mental asylum/hospital’. The long term impact of societal stigma was discussed with respect to young people, who have had a history of mental illness, being unable to marry, ‘we should hide it from others so that others cannot get to know this if the person is of marriageable age’, ‘even if he gets well, no one will marry him or he will not be given a job in a factory or company.’
Help seeking practices for the management of symptoms of mental illness
Participants in all focus groups discussed mental health help seeking behaviour in terms of a combination of socio-cultural and biomedical services. Traditional healers include ‘peer saab’ (spiritual healer), are often preferred to biomedical services as they are accessible (usually in the same village or nearby), and share cultural knowledge, beliefs and practices. The peer saab uses amulets ‘taweez’, verses from the Koran, and instructs the individual to perform ‘niyaaz’/‘khatam-e-shaif’ ‘(ritual acts that aim to cure them). If treatment is unsuccessful with the peer the family may seek out another peer saab or go to a hospital to see a doctor. Biomedical treatment was referred to by all in terms of medication. It is common for people to adhere to both treatment prescribed from a medical doctor and from the peer saab, this has been given the colloquial term of ‘Dua Ti Dawa Ti’, both prayer and medicine. Pharmacists, locally referred to as a ‘compounder’ were also discussed as a source of treatment for symptoms of psychological distress. Taking a patient to the psychiatric hospital in Srinagar (the only psychiatric hospital in the Kashmir Valley), referred to by participants as the ‘mental hospital’, was viewed as a last resort, a decision a family takes when all other resources and options have been exhausted.
Perceptions of the effectiveness of treatment received
Mixed perceptions with respect to the effectiveness of treatment received were commonly discussed. The necessity for multiple investigations and tests in the biomedical system was discussed along with divergent views on the effectiveness of treatment; ‘we have taken her to every doctor and she is not getting improved’, ‘the doctor gave me medicine but I was not able to tolerate it’, ‘tension doctors give medicine and the patient reports that he gets improved’. The common practice in the biomedical system of subjecting the symptomatic individual to multiple investigations was a predominant theme; ‘[we take them to] multiple specialists and undertake many investigations, [many] rupees are spent on specialists and investigations’, ‘too many investigations and tests…symptoms get worse until he is finally taken to the mental hospital’. The effectiveness of treatment was at times described in terms of ‘fate’, ‘if it is in his fate he will get better’. The effectiveness of treatment received by traditional healers was also met with divergent views; ‘these patients can’t get better by treatment from peer’, ‘they have told me to take her to the shrine, there she will get treated’.
Barriers to accessing care and treatment
Perceived barriers to accessing care and treatment included financial constraints, distance to services, lack of physical infrastructure such as roads and transport, and lack of knowledge of available services. Financial constraints to accessing services was viewed as a common barrier, ‘if a person does not have money in the pocket then what will he do. Distance to services had an impact on the type of care accessed; ‘the peer is nearby and less costly’, ‘we don’t have a doctor or hospital…we get treatment from the compounder [pharmacist]’, ‘there is no service for people with tension to get first aid’. Inadequate physical infrastructure was mentioned in terms of the need for adequate roads and transport; ‘to find [a] doctor we need transport’, ‘we don’t have roads’. Lack of knowledge of available mental health services was emphasised in all focus group discussions; ‘we have no knowledge of services’, ‘we don’t have any guidance on this, we only take them to a doctor’. Knowledge was restricted to faith healers, medical doctors and the mental hospital, ‘pagalkhana’, ‘we have heard there is a dimagka (brain/mind) doctor in Srinagar’. In response to the question on their understanding of ‘counselling’ or ‘talk therapy’ some participants had little to say; ‘we don’t know about this’, ‘we have not heard about this’. Others demonstrated a perception of the concept, described counselling as ‘advice’, ‘giving sympathy’, ‘treatment’, ‘physical relaxation exercises’, ‘a program on the radio’, ‘brainwash that you don’t have a problem’, ‘making people aware of their problem and how to manage them’, ‘this can be a responsible wise person in the community who can advise’.
Perceived mental health service needs
Health service needs
Participants identified a number of services as necessary for the management of mental health in their communities including needs related to health services, physical infrastructure, socio-economics and skill development and community awareness programs. Emphasis was placed on the need for greater proximity to mental health services; ‘whatever is needed for this [mental illness] should be here, it [mental health services] should be in every district’, ‘we should have some kind of clinic here for this [mental illness], provide them a safe space so that they can vent their feelings and have someone to listen to them empathetically. Few participants had knowledge of specialist mental health service providers, beyond the ‘mental hospital’. Those who had said that this service was not readily available to them or their community.
Importance was placed on training health care workers and doctors to be able to recognize and manage symptoms of psychological distress and mental illness; ‘[a need for] staff who can understand and motivate such [mentally ill] people’, ‘[a need for] staff that understand others museebath (troubles)’, ‘[the community needs] Dilbari karin – people who talk in such a way that they [those with mental illness] come out of this’. Physical infrastructure to improve access was commonly referred to as both a barrier to accessing services and as a service need, ‘we should have a road’. Socio-economic pressures were recognized as having a negative impact on mental health and as such employment, business development, skill development and employment for women were all mentioned as service needs which would improve overall mental health in the community; ‘there should be some way to earn a livelihood’, ‘[we need] some kind of employment for women’, ‘some business needs to be started here’, ‘[we need] a centre for learning some kind of work and keeping busy’.
A cross-cutting theme under perceptions of community mental health service needs was the need for community awareness programmes. The significance of mental health issues in communities came across strongly in the focus groups with all groups expressing that this was a very important issue in their community, however they felt unequipped to manage people with symptoms of psychological illness. Participants expressed a desire to know how to support members of their family and community with signs and symptoms of psychological distress. ‘there should be some programme then people could understand’, ‘we should have a facility to show us how to do some kind of first aid [for mental illness].’