Families Without Fathers

I am meeting 17-year-old Gulbahor’s mother for the first time. We are on outreach in the south of Tajikistan to assess Gulbahor’s home. She has been in hospital in Dushanbe for 6 months and we recently found out that her TB is XDR: resistant to almost all of the drugs. She is still infectious, but if her home is suitable, and her family understands the infection control measures, we think she would be better off there.

As the end of our conversation draws near, I remark to her mother: “You seem like a very strong woman”.

“What else can I do but go on?” she replies, “but inside I am destroyed”.

She smiles bravely, but wipes at her eyes with the back of her hand.

Gulbahor’s father left the family 12 years ago to find work in Russia. He was to make much more money there and provide for his family in a way that is not possible in Tajikistan. Apparently life was so much better there that he never came back. He found another wife and started a new family. He has stopped sending money to Gulbahor’s mother; only sends a bit once in a while to Gulbahor because he knows she is sick.

The other 3 children, a daughter and 2 boys, don’t get anything. Gulbahor’s mother has 2 rooms in her uncle’s farmstead, and works the land she and her husband were to farm together. The boys stay with her, but her daughter has to live with another family member.

If Gulbahor comes home she will need an isolated room, a luxury that means more sacrifice for the rest of the family. By the time we make this clear, the poor woman tells us that maybe it’s better if Gulbahor stays in hospital.

It’s a shocking scenario that we keep hearing from many of our patients’ parents: Father in Russia, mother left to fend for herself and her kids. Many men don’t come back, or stop sending money, or take a second wife.

To be fair, a recent documentary by Al-Jazeera (English) on this phenomenon highlighted the other side of the story. The Tajiks in Russia are often treated badly, made to work long hours and then told that they will only be paid if they work even longer. They get trapped by an unfair system that makes it hard to be there, but even harder to leave.

This documentary is about such families as we work with every day; it is unexaggeratedly true-to-life.

Another mother we visit has just brought her daughter Nuria home from hospital. She is also 17 but is doing well on MDR treatment and grinning from ear to ear to be back home. However, Mom tells us Nuria will be living with her aunt. Her other daughter is living with another aunt.

“Baroi chi?” Why?

Because Mom is leaving for Russia soon herself, to join her husband. Well, that’s one solution. I feel sorry for Nuria, but she is still smiling.

We have a bit of an issue getting Nuria’s DOTS set up: Mom is suggesting Nuria walk 2km into town every day to get her meds because she is afraid that otherwise people will see the nurse coming to the house and realize Nuria has TB. She wants her to marry soon, and she’s pretty sure that no man will want her if he knows she is sick.

I can’t help myself: I almost hope that the stigma will protect Nuria from the worse fate of what marriage has become for so many Tajik women.

I am meeting 17-year-old Gulbahor’s mother for the first time. We are on outreach in the south of Tajikistan to assess Gulbahor’s home. She has been in hospital in Dushanbe for 6 months and we recently found out that her TB is XDR: resistant to almost all of the drugs. She is still infectious, but if her home is suitable, and her family understands the infection control measures, we think she would be better off there.

As the end of our conversation draws near, I remark to her mother: “You seem like a very strong woman”.

“What else can I do but go on?” she replies, “but inside I am destroyed”.

She smiles bravely, but wipes at her eyes with the back of her hand.

Gulbahor’s father left the family 12 years ago to find work in Russia. He was to make much more money there and provide for his family in a way that is not possible in Tajikistan. Apparently life was so much better there that he never came back. He found another wife and started a new family. He has stopped sending money to Gulbahor’s mother; only sends a bit once in a while to Gulbahor because he knows she is sick.

The other 3 children, a daughter and 2 boys, don’t get anything. Gulbahor’s mother has 2 rooms in her uncle’s farmstead, and works the land she and her husband were to farm together. The boys stay with her, but her daughter has to live with another family member.

If Gulbahor comes home she will need an isolated room, a luxury that means more sacrifice for the rest of the family. By the time we make this clear, the poor woman tells us that maybe it’s better if Gulbahor stays in hospital.

It’s a shocking scenario that we keep hearing from many of our patients’ parents: Father in Russia, mother left to fend for herself and her kids. Many men don’t come back, or stop sending money, or take a second wife.

To be fair, a recent documentary by Al-Jazeera (English) on this phenomenon highlighted the other side of the story. The Tajiks in Russia are often treated badly, made to work long hours and then told that they will only be paid if they work even longer. They get trapped by an unfair system that makes it hard to be there, but even harder to leave.

This documentary is about such families as we work with every day; it is unexaggeratedly true-to-life.

http://www.aljazeera.com/programmes/101east/2013/07/201372393525174524.html

Another mother we visit has just brought her daughter Nuria home from hospital. She is also 17 but is doing well on MDR treatment and grinning from ear to ear to be back home. However, Mom tells us Nuria will be living with her aunt. Her other daughter is living with another aunt.

“Baroi chi?” Why?

Because Mom is leaving for Russia soon herself, to join her husband. Well, that’s one solution. I feel sorry for Nuria, but she is still smiling.

We have a bit of an issue getting Nuria’s DOTS set up: Mom is suggesting Nuria walk 2km into town every day to get her meds because she is afraid that otherwise people will see the nurse coming to the house and realize Nuria has TB. She wants her to marry soon, and she’s pretty sure that no man will want her if he knows she is sick.

I can’t help myself: I almost hope that the stigma will protect Nuria from the worse fate of what marriage has become for so many Tajik women.

Posted in mental health officer, Tajikistan, tuberculosis | 1 Comment

Of sticky mouths and contemplation

The holy month for Islamic people is happening now: Ramadan. Tajikistan is a muslim country and many people are observant, so many are fasting. When I heard how many of our national staff were going to fast, and that my fellow expats Irshad and Tila would too, I decided to participate. 30 long days stretching endlessly before me…

So the first thing I need to tell you is that the temperature here averages 35 degrees C every day. Sunrise starts at 3.15am and sunset clocks around 8pm (gets a little earlier each day). Nearly 17 hours! What I didn’t realize when I made my decision was that no drinking is allowed either. Nothing is to enter the body except air. No brushing of teeth, no rinsing the mouth, not even  chewing gum. So the hardest part of the first few days was the sticky feeling in my mouth after getting up in the morning (not being a devout muslim – or any kind of muslim at all – I go back to bed after getting up at 3am to eat). The devout do their prayers and at least one person I know stays up and starts her day.

TB Tajikistan MSF

Sunset in Dushanbe © Terry Porsild/MSF

 

The second thing is the thirst. A lot of the time you forget about it. And the prospect of satisfaction at the end of the day helps to endure. But these moments of discomfort are actually very important. Feeling extreme thirst today made me sit down and think. What am I fasting for? What meaning does this have? Why am I enduring this?

TB Tajikistan MSF

Me, at a loss © Terry Porsild/MSF

 

The third thing is realizing the extent of my ‘addiction’ to food. I have discovered how much time I spend going to get cups of coffee, glasses of water, cookies, bags of nuts. I always have something going next to my elbow. I discovered how much I welcome lunch break and the big Tajik meal cooked every day by Delia – and that I am at a loss to know what to do with myself when 12.30 comes around and I don’t have to go downstairs with the rest.

So without all the activity I normally have around food, I have all this time to contemplate – 10 days on mercy, 10 days on forgiveness, 10 days on how to seek refuge from hellfire, or so Irshad tells me… I’m afraid I’m not really following the teachings.

TB Tajikistan MSF

My colleages Irshad and Tila © Terry Porsild/MSF

 

But I do feel solidarity with those who are by observing the rituals, not eating and drinking alongside them, and learning more about Islam. The time spent asking myself questions leads to good reflections on my own choices in life. And enduring the discomfort helps me to feel compassion for the suffering of people who have to endure far worse. My ‘suffering’ ends every day around 8pm, and that perspective makes it easy to hang on.

TB Tajikistan MSF

End of 'suffering' © Terry Porsild/MSF

 

That first taste and sip are so delicious, I can only feel thankful!

How much harder it must be when there is no perspective; when you can’t see that there will be an end to the suffering. Like when you’re a small child with MDR-TB and have to take pills that make you sick and give you pain, every day for two years…

TB Tajikistan MSF

Child with MDR-TB © Terry Porsild/MSF

 

 

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Death and dilemma

Emotions don’t really fall into the category of stigma the way TB does, yet the Tajiks seem very frightened of evoking too many of them. They go out of their way to avoid displays of emotion, seeing people cry upsets them terribly, and their language has remarkably few words to describe feelings. “Upset” and “angry” – two different concepts in English – get the same word in Tajik. The Tajik word “sikh” means both bored and sad. Huh? I’m sorry, but in my emotional life, bored is really not the same as sad!

In trying to respect cultural differences such as this I tend to get bogged down in philosophical musings on the nature of emotion and the expression thereof and whether or not it is appropriate for me to be teaching my staff and our patients our Western ideas on dealing with emotion. I know the research, I’ve seen the clinical evidence, I am convinced that it is healthier to encourage and express emotion, to process grief and other emotions than to avoid them and keep them inside where they fester and burn and become somatic problems. Yet I  doubted…

Remember Yusuf? The 14-year old on our MDR-TB ward who can’t gain weight and who nearly died on us in February? Well, thankfully he didn’t die, but sadly, his Mom did. She died on March 17th. We only told Yusuf last week.

It has been a terrible dilemma. She died without our team being made aware that she was failing, so we weren’t able to give any advice or counseling to prepare him for her death. The family chose not to warn him or tell him anything because he was so ill himself, so he was not taken to see her, was unable to have any last communications with her.

So how then to tell him? I had my ideas, and instructed Yusuf’s counsellor. But Yusuf’s doctor was afraid for his health and didn’t want him to know at all. Yusuf’s father follows doctor’s orders. My counselor was unable to go against so much opposition and perhaps was struggling with her own Tajik tendencies to avoid intense emotion. So she kept putting it off, under the ruse of not wanting to go against the father’s wishes. In the meantime, Yusuf was asking about his mother and people were starting to lie to him. They even had his aunt speak to him on the phone pretending to be his mother, which he of course saw through right away. I tried to explain how detrimental this was going to be for him, that although the intentions to spare his feelings were good, the result was going to be the opposite. His trust in others will be ruined, it shows a lack of respect for him as a person, the processing of his grief will be out of sync with the rest of his family, he will feel shut out – in short it’s going to make him feel even more cut-off from his other loved ones than he already was.

Yet there was so much worry that his grief would tax his over-worked lungs and heart more than he could bear – and to be fair – I think no one could face their own breaking heart in the face of his certain despair.

Another part of the dilemma was the fact that Yusuf is getting better. He has been cheerful and happy and he has actually gained a bit of weight. Who could face telling him?

We talked about it at the office a lot, Andy and Christoph and I, our national staff nurses and MD’s, as well as the counseling team. We were all concerned for him, but we could also understand the reluctance. I gently – doubtingly? – pushed Yusuf’s counselor to find a way, but she seemed stuck in avoidance.

It took an ultimatum from Christoph, something along the lines of : “if you don’t tell him by Tuesday, I will!” to unstick her.

She rallied. She made the call to his father, they set an appointment to tell Yusuf. His dad brought reinforcements – the grandparents, the little brother, the aunt. Yusuf’s doctor was there, the nurses were there.

It went as well as can be expected. He cried. He asked questions. He cried some more. It didn’t take him long to figure out how long he’d been left in the dark. Yusuf was SO angry. He was more angry than he was sad. He looked at the nurses, he looked at the MSF staff, then he struck with the only weapon he has:

“I will not eat anything anymore because you have all lied to me!”

 

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World TB Day

March 24th was World TB Day, sounds like a happy event!

But as someone here pointed out, TB is not something to celebrate. Oh yeah, almost forgot. But it’s good there is a day for it, because we really need to do some awareness raising. ‘Fatal Neglect’ is an apt term – if you haven’t seen the video made by Ron Haviv here in our project last fall, please check it out.

Because World TB Day fell square in the middle of the spring festival Navruz, we are postponing the marking of the day until April 3rd. We will have a ceremony – though not a celebration – by inviting many people to the Pediatric TB Hospital and officially opening the new facilities we have set up there: over the past year-and-a-half our logistics department  have succeeded in building an MDR ward, a sputum induction room, a diagnostic room and a laboratory.

The entrance to the Pediatric TB hospital © Terry Porsild

The entrance to the Pediatric TB hospital © Terry Porsild

 

The MoH is grateful to us but struggling hard to find the staff needed for the extra work – nurses are paid appallingly low salaries and have incredibly long shifts in poor working conditions. Not all of them welcomed the training in sputum induction as it simply means another job in their already tiring day. Lab techs face a similar challenge, though for different reasons. The point is to diagnose DR-TB in children earlier and quicker, so they can get proper treatment. Hopefully that means more patients – whoops! – we just created  even more work for them… it’s a complicated business, this battle with TB. There are so many conflicting interests.

Happily we can also truly have a celebration though: the first patient in our program to finish her DR-TB treatment will take her last meds at the end of March – almost coinciding with World TB Day. She is a lovely, smart, teenage girl who is preparing for university. She recently went to Kazakhstan for a math competition and won 3rd place. She is doing very well and we are very proud to have been able to provide the drugs and the support that have helped her along.

We hope that she will cut the ribbon to open the lab. I’m going to miss the happenings, as I’m going home for a short holiday, but hopefully the others will take some pictures and I can tell you more in the next blog.


Here’s the video Ron Haviv made here last fall.

You can find out more about the film here.

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Navruz

It is Navruz: literally ‘a new day’, and the biggest festival in Tajikistan. It’s a spring festival, a celebration of the new year (equinox) starting. One of the symbols for it is sprouting wheat. I know this because the children in the hospital have been drawing pictures of decorated bowls of wheat grass all week.

Navrus wheat © Terry Porsild
New year, new wheat © Terry Porsild

Today I see women dressed in ‘kurtans’ patterned with the design known as Atlas (it was originally a woven design for silk, now mostly polyester print), and some have these bowls of wheat grass with them.

There is a traditional dish made with it where they grind the spouting wheat (before it becomes grass) in a large cauldron, add water and simmer it slowly over a wood fire, stirring with long large paddles for a full day or night (10-12 hrs). Then a lid is put on and it sits another 6 hours or so. The result is ‘sumelak’, a brown pudding-like mixture that is sweet and nutritious and reminds me of caramel. They also bake or fry the mixture in flat rounds that look like thick pancakes or bread rounds.

Sumelak

Sumelak being prepared at Dushanbe Bazaar © Terry Porsild

Tajikistan has six days of holiday for Navruz this year: four working days plus the weekend. We too are free!  The whole city seemed to be outside today, women and girls resplendent in their geometrically patterned Atlas garb, the men and boys in their usual jeans and jackets. Everyone was going to the parks and squares, with the whole family.

Me, soaking up the Navruz atmosphere © Terry Porsild

 

I rounded up some of our MSF family and we started walking, intending to go to an area the drivers had pointed out to us as the place where it would all be happening. But on the way there we discovered everyone walking in a different direction, so just followed the crowd. We ended up in a children’s fairground, complete with rides, candy apples and cotton candy. Not exactly what we had in mind, but it was fun to see – the same scene as you would see at home, just Tajik flavored. And very fitting that the MSF pediatric project ended up there!

Local people enjoying the funfair © Terry Porsild

 

The weather cooperated by being so sunny and warm that people sat near the water and ordered ice-cream for their kids after all the excitement of bumper cars and mini roller-coasters (hottest place in town!). We ate shashlik and drank beer and took a lot of pictures, which made the dressed-up girls very happy. I guess spring is here!

Women and girls resplendent in their geometrically patterned Atlas garb © Terry Porsild

 

 

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Food, faith and fables

Harissa is a year-and-a-half old, but she has the appearance of a baby a few months old. Her TB has left her so malnourished that she only weighs 4 kilos – less than when she was born. Her skull bones protrude and make her look aged, despite her baby size. She has retained some of her development, so it is incongruous when she talks a little, or when she shows the dexterity to put her soother in her mouth by herself. Her mother is well-dressed in modern Tajik clothing and headscarf and at first glance you would not suspect an overly religious leaning. So there was panic all round last week when the mother took Harissa home from hospital, informing us that she would be taken to the mullah for a spiritual healing. She was given a treatment that involves pouring water from a turtle shell over her head. The parents swear she improved after that.

It seems that both doctors and parents first tried every other diagnosis they could find; Harissa has been treated for many things. Although there is a family member who died of TB, there has been a studious avoidance of mentioning him or making any link to Harissa’s symptoms. A gaping huge blind spot in the middle of their field of vision…

Now that TB has been deemed the final diagnosis, their desperation is complete; prayer and ritual are the only way out. We convinced them to bring Harissa back to hospital, but I get the feeling the parents are only placating us – Oh alright, if you really want to give her medicine … They have asked to take her out of hospital one day a week for three weeks for the turtle shell treatment, so now it’s our turn to be placating: as long as they also let Harissa take our medicines, and try to feed her more, we don’t mind.

Harissa and her mother © Terry Porsild

Harissa and her mother © Terry Porsild

 

It’s proving quite a battle to get our kids with TB to gain weight. Harissa is not the only one. Kids can be fussy eaters at the best of times, but when they not only have the wasting caused by the TB itself, and no appetite due to illness and medication it gets dire. So dire in fact that the whole system can crash, like Yusuf’s did.

14-year old Yusuf looks like a nine-year-old and has been on our MDR ward for months. He was the only one there and very lonely. He is underweight, has little appetite and doesn’t like the hospital food. His mother is too sick and his father too poor to be with him often enough to provide regular meals that he likes. He seemed to be getting worse rather than better for being hospitalized so long, and if he wasn’t actually losing weight he certainly wasn’t gaining any. We started doing a home assessment to see if he couldn’t be discharged where he might be happier. And then suddenly he nearly died on us – went into respiratory distress, lost consciousness, his heart was failing. No discharge any time soon for him now; he’s on oxygen and can hardly walk. But we still can’t get him to eat enough, despite using star charts, positive reinforcement and the promise of rewards for gained kilos.

Kulob TB hospital © Terry Porsild

Dr. Zafarov (MoH) and Dr. Ioanna Haziri (MSF) at the Kulob TB hospital © Terry Porsild

 

Which brings me to Plumpy Nut. Yusuf hates it; poor Harissa vomits it out every time. Many other kids won’t eat it either, they don’t like it. Plumpy Nut is a therapeutic food prescribed for underweight or malnourished kids. It’s made of nut paste and sugars and other good things, high in calories and nutrients, and it resembles peanut butter in taste and consistency. African children tend to love it, they gobble it up, lick the packages clean. Many Tajik children however, can’t stand the stuff for some reason. We’ve tried all sorts of things, mixing it into warm milk, spreading it on bread or biscuits, combining it with other foods, but we just can’t make it palatable. We’ve even decided to change our pharmacy order to a different kind of therapeutic food, as our supplies of Plumpy Nut may possibly expire before we can get it into the kids!

Aziz's grandfather © Terry Porsild

Aziz's grandfather © Ter ry Porsild

Aziz who is four, hasn’t tried Plumpy Nut yet – he has TB meningitis and is so sick he has to be fed through a tube. His father is illiterate and unemployed at the moment, but he clings to our words as his only hope and does everything we suggest. He is massaging Aziz’s arms to help the contractures developing there. He spends a lot of time at the hospital so Aziz won’t be alone. He feeds him water through a syringe. It is heart-warming to see. Grandfather is also there, sitting cross-legged on the other bed, his traditional four-sided black-and-white hat complementing his full white beard. He doesn’t say much, he’s just there. I imagine that Aziz, sick and little as he is, is being healed by that, just as I can see that the whole family is grateful we are here.

All patient names have been changed

 

 

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Frustration

Frustration reigns supreme in our project!

We are “hands off” here. We don’t practice our professions with the families referred to us; we are training our Tajik counterparts to do it. This is the way it should be but it can be a lot less satisfying than just jumping in yourself. For instance our young and enthusiastic pediatrician, Christoph, can be quite vocal about this (in the privacy of the office). He shakes his long hands at us in exasperation after a morning at the hospital, asking “what is so hard about ….???” at the realization of yet another gap between his training and that of the doctors here. It would be so much easier to just step in and do it himself.

This country has many difficulties and one of them is in the transfer of knowledge. This gives Christoph a kind of stigma too. He is feared, perhaps even resented, for the power his knowledge lends him. They are finding it hard to give him their trust. It’s going to take time, a lot of communication, and maybe some vodka …

Meanwhile, I struggle with another frustration – the importance of language for communication. You can only do so much with sounds, facial expressions, gestures and body language. To go deeper, to discover what’s really inside a person, to really hear their thoughts, at some point you need words. I am a therapist at heart. I am curious about how others think, I am fascinated by behavior, I am moved and affected by another’s suffering and I get deep satisfaction anytime I succeed in helping alleviate stress or grief. However, I am a ‘verbal’ therapist – my tools are words.

But I can’t use them. I don’t have enough Tajik or Russian words yet. I train our national counselors through translators. The translators do something to my words, the counsellors interpret those words into interventions, the responses from the family get translated back to me. Or they don’t, as the case may be, for various reasons.

Winter trees © Terry Porsild

Winter trees © Terry Porsild

 

Have you ever drunk a really good smoothie? Where the tang of berries or citrus was softened by banana and made creamy by yogurt; a whole new blended flavor? That’s what good communication feels like to me. But here it feels like I keep ending up with three berries and a glass of milk and no idea where the banana went!  Not exactly satisfying.

It’s not that our translators aren’t good, they are. It’s hard work and they sometimes put in long days trekking round the country with us. It was Friday today, end of the day, end of the week, and our nurse Andy came back to the office after spending the better part of the day training national nurses in a certain procedure. I’ll spare you the details, but it involves putting a tube into a child’s lung through the nose. Andy was the guinea pig four times, letting nurses practice on him, so he had quite the day. But it was Nozil, his translator, at whom I took one look and said – you need to go home, you’re exhausted, and he simply nodded and pointed to his neck: I need a massage!

Ioanna, who works down in Kulob with our nurse-practitioner Tina (who can’t practice, another frustration), is our TB doctor, or phthisiatrician (a great new word!). She struggles with a whole mass of frustrations, including how to put into words what working for MSF in Tajikistan means. But her attempt is so poetic: “it’s weird, what we are seeing in Tajikistan, the work we are doing, it is real, but it’s not. You think there is understanding, but then there is not. It’s like the landscape, it looks unreal, it looks like maybe you are on the moon, but you are not.” And then she takes one of her amazing photographs and you see what she means.

Mountains © Ioanna Haziri

Mountains © Ioanna Haziri

 

Getting back to smoothies though, I have to say we made some amazing ones here in the fall. The grapes were on, the pomegranates ripe, and the persimmons were just turning chocolate-colored inside. Grapes and persimmons grow in our garden, and the pomegranates are sold by the side of the road for 13 somoni a bucket – about two euros. Some kefir from the supermarket – which is a kind of yogurt, but more liquid and tangy – and the blender MSF has conveniently provided in our house did the rest. You had to strain the pulp from the pomegranate seeds through your teeth, but man, the flavor!

Although we have several, it was a sad loss when one of the persimmon trees cracked under the strain of all the snow …

 

Weight of snow © Terry Porsild

Weight of snow © Terry Porsild

 

Can’t wait for spring – I’ve heard they have early cherries …

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Fate and medicine

The Tajik people are big on fate. Their version of the islamic saying ‘inshallah’, which is nazeeb boshad, means more like “if fate so wills” than “if Allah so wills”. Maybe this is because Tajikistan has always been a kind of in-between place, where Persian kings stopped awhile but never actually stayed and Chinese merchants passed through taking silks to more wealthy places. In the Soviet times, it was the furthest place out and seems to have got the least attention. When the Soviet Union dissolved, so did Tajikistan’s economy.

New Year's tree © Terry Porsild

The Tajik identity, too, seems to have become lost somewhere along the way, leaving a strange mixture of feelings, opinions, beliefs and customs behind. You can see it in the holiday season happening right now. The dominant religion is Islam, so though there is a word for ‘Jesus’s birthday’, Christmas is of course not celebrated. The more surprising therefore to discover that Christmas trees, office parties, Santa Clauses, and exchange of presents  abound – for New Year! It’s called a New Year’s tree, and Santa Claus is called Grandfather Snow, but still … What an integration of customs! I hear there’s to be champagne and fireworks on New Year’s Eve too, surely that’s not traditional Tajik. But I like it!

Working in the pediatric TB hospital has been challenging the last while. Due to funding problems, the hospital has to do without many things. One of those is climate control i.e. heating. Even though the temperature dropped considerably in November, it was not possible for the central heating  to be turned on until Dec. 15th. Poor staff, poor children, poor us!

But now it’s on, it’s lovely and toasty and the kids aren’t getting colds any more.

MSF provided each child with a New Year’s present of a coat and one other clothing item to help keep them warm and healthy, plus chocolate and a small toy. Wonderful to see their excited faces and pride in showing off their new jackets.

Snow © Terry Porsild

 

Although the kids in this hospital don’t have MDR-TB (multidrug-resistant tuberculosis), our project as a whole is very active on the spot, viewing it as one of the best places to nip MDR-TB in the bud, as well as being a jumping-off place for further cooperation with the National TB program.

Our psychosocial department has developed a play therapy program for the hospitalized kids. Two of our counsellors go in each weekday morning for two hours. We offer health education about TB, give them rules of behavior and cooperation, and the children can choose from different activities that stimulate development, like puzzles, Lego, drawing and coloring, and socially interactive games. What always strikes me is their eagerness to learn and the way they just soak up all the stimulation they’re being offered and even ask for more. With my few words of Tajik, I sometimes try to write down what they’re saying to me, and then they want to know the English word, and before we know it we’re in a mutual language lesson.

MSF's play therapy program © Terry Porsild

 

Stigma raises its ugly head regularly. Just having TB is a stigma. Sometimes the patients themselves are blamed for getting the disease; sometimes it’s the neighbors who are afraid they’ll catch it from you; some people have a teenage daughter and fear no one will want to marry her. So people are not keen to go to the doctor when their child develops symptoms. The doctors in the past have not been keen to treat children (out-dated belief that children don’t get DR-TB). The families are not keen to have the neighbors know, as word gets around and then they are socially ostracized.

We noticed the problem when our team visited a family down south, where we have been providing transportation money for the DOTS (Direct Observation of Treatment Schedule) nurse, as well as adherence counseling. Counseling is more or less compulsory in TB programs now, as is taking the medication under DOTS. This, in short, is a nurse who watches you swallow every last pill, every day for months and years. We are helping out the DOTS nurse here, because the mother won’t take her child out in public to the community clinic to get the medication, for fear of stigmatization.

If the nurse, who is a competent and lovely woman but quite elderly, happens to be sick or can’t make it, the mother will not allow even a close family relative who has had nursing training to replace her, because then she would have to reveal the nature of her daughter’s illness. This places the daughter at risk for missing treatment and developing more resistance to the drugs. Also the family has decided this girl, who is 15, doesn’t need to go to school anymore, as they will be arranging a marriage for her before long. I hoped to listen in on the session our counsellor had arranged with her, in order to hear more about her fears and so find ways to tackle them, but this too was seen as a possible breach in confidentiality and I was asked to wait outside.

A Tajik elder © Terry Porsild

So how are we to tackle this stigma, to start remolding the beliefs and attitudes of these people who are often so poorly educated and even less well-informed about TB, through poverty, cut off from current affairs and information streams?

A grandfather recently took his child home from the hospital against all advice. The child was severely ill, maybe dying, but he couldn’t see that she was getting any better by being in hospital and wanted her home. “What if she dies?” we asked. “Then that’s her fate”, was his answer. We are now moving heaven and earth to treat her at home and she is getting better. Fate? Or medicines?

The Tajiks have been through so much throughout history, I can easily imagine how it’s better for your sanity to shrug your shoulders and put it all down to fate, than to try and fight situations you don’t understand or are powerless to control.  In psychology they call this reaction learned helplessness, but I like the Tajik version better: nazeeb boshad.

Still, no reason not to help fate along a bit; we’re working on it!

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Stigma

You know how even back home, people are still reluctant to let it become known that they need psychological help? It still seems to be seen as a weakness to have feelings and moods and tension, and to go to a professional for help in working through them. I mean, I get it. It’s in our culture to be valued for being strong and not needing any help, and we all fear appearing to be weak. Yet talk to anyone who has seen a good psychotherapist or mental health counselor and they will all say how they wish everyone could have that experience. Slowly the attitudes are changing, back home.

Imagine how much longer it is taking, then, in countries – like here in Tajikistan – where there is no word for ‘counselor’, let alone something like ‘psychosocial support’. There are few mental health services here and suggesting someone could use them often causes dismay, or even shame. And we haven’t even started to talk about TB yet and how that is a subject for mental health. Changing attitudes is a long way off, I’m afraid, yet in my humble opinion after just one month, is the main thing we need to help out with!

© Terry Porsild

 

Okay, of course, you have to start by treating the disease. I needed a crash course on TB when I signed on for this project. Are you like me, and thought TB was mostly eradicated?  In large parts of the world it most definitely is not. Central Asia is badly hit, and because of lack of knowledge, information, support, resources, etc, it’s getting worse. Here’s what I’ve learned in a nutshell: TB is caused by bacteria and is treated by antibiotics. If you don’t take them properly, the bacteria become resistant to one or more of the antibiotics and mutate into new forms. This is called drug-resistant (DR) or multidrug-resistant (MDR) TB. More drugs are added to the regime to fight this new form, but there are several of them and they have to be taken for a longer time. There are many unpleasant side effects. If you don’t follow the drug regime properly, these bacteria also become resistant and then we speak of extremely drug-resistant (XDR) TB. There are few effective drugs available for XDR-TB.

The horrible thing is, the drug-resistant TB bacteria can then be directly transmitted; you don’t have to develop it by not finishing the medication course. So even young children can present with MDR-TB. However, not all the members of the medical profession in this part of the world are aware of this, and the children aren’t receiving the right treatment.

Hence this MSF project to help treat pediatric TB. It’s only been a year, but the team has done amazing work: up and running in a multi-disciplinary and multi-national team. Here’s an example of a team on an outreach visit: our MD, the local MD, our translator and our psychosocial counselor. Missing (but only from the picture) are the nurse, and the family.

TB outreach team

TB outreach team © Terry Porsild

So how is TB a subject for mental health, you ask? Because by the time families get their children referred to us,  often people in the family have already died from TB. The child is usually already very ill and sometimes the parents or other family members are symptomatic. They have often been on medication regimes before, poorly supervised and so improperly ended, leading to resistance to the drugs. Their trust in their own doctors is often gone. If they decide to start with us, they have to commit to a medication regime for their child which can last up to 18 months.

So what have we got? Before we’ve even met them, they’re dealing with issues around loss and grieving, they’re feeling anxious and desperate about their child, and their trust in the medical profession is down to zero. And then we have to tell them their child will be getting a whole mess of powders, pills and injections, for a long time, which will probably cause painful and nasty side effects. Who could watch their child go through that and stay sane?

I watched a young girl this week, as she sat staring at eight pills and three bowls, the syringe waiting on the cushion next to her. She started with the biggest first, because she has trouble swallowing them, and she ended with the yummy juice. So smart. So brave.

Tablets © Terry Porsild

Tablets © Terry Porsild

There are a lot of feelings, moods and tensions in these families! There’s plenty of mental healthcare – or as we prefer to call it – psychosocial support – to be done here. But …  as I said, the concept is still pretty alien.

Shoes

Shoes © Terry Porsild

So we start at the beginning: talking, listening, supporting, doing whatever it takes to help them stay on the program. But privately, because no one must know. Psychosocial help signals weakness, but in this culture so does having TB. Which brings me to the stigma … families here are being shunned and devalued by those around them just for having TB. Misconceptions and misguided beliefs about the disease are the main reason.

More about these lovely Tajik children and their struggles – and our struggles to help them – in the next blog.

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