Challenges Of Culture — Understanding Motives

One of my patients with retinoblastoma had the involved eye enucleated (removed) and he received his first cycle of chemotherapy. He went home to return one month later. Our team, medical officers, nurses and I spoke to the mother about the high cure rate for this cancer, the treatment plan, and the need to complete treatment. But, she didn’t come back with him until months later.

Lost to follow-up is not uncommon in resource-limited settings; we see it throughout Africa. However, in Botswana, all someone has to do is go to a local clinic and show their outpatient card with the review date, and they will be provided transport. Maybe not the same day, but certainly within the week.

So what was the reason in this particular situation? There’s always a reason.

After talking to her for awhile, it was clear she understood that we wanted her to come back and why.

So why didn’t she come?

The only answer she gave was, “well, he’s already lost one eye.”

The best we can understand is that she felt “he’s only got one eye… so what’s the point?”

Almost as if to say, although she never said it, that having one eye is worse than death. Coming from a very old culture, the San (Bushmen) of the Kalahari, perhaps that does make sense. The San knew how to live off the desert, and even though they live in a town, the idea of being disabled equates in her mind with an inability to live. If he cannot live well, why bother? Mind you, this is me trying to interpret her only statement that gave any reason to why she did not bring him back.

The beauty of culture, however, is that staying amongst the other children, perhaps more importantly, the other mothers in the ward, she is now all in. She’s been willing to treat him with chemotherapy and radiation. Given the extent of the disease, I worry it may be too little too late. With the high cure rates for retinoblastoma, I still hold out hope for this little boy who has the happiest demeanor and who spends the day laughing, eating and singing. Boy he can sing. Who knows, maybe one day he’ll be on stage somewhere, all because a culture found a way to bring a mother around without any intervention, ultimately, on the part of the medical profession.

One can hope, one must hope, otherwise, what’s the point?

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About Dr. Parth Mehta, Pediatric Oncologist - Botswana

I am an assistant professor of pediatrics at Baylor College of Medicine and director of Texas Children’s Global Oncology Program. Before relocating back to the United States, I served as the Director of the Haemophilia and Oncology Clinic of Botswana at the Princess Marina Hospital in Gaborone, Botswana from 2007 to 2011.
Posted in Cancer and Hematology, International Cancer and Hematology

7 Responses to Challenges Of Culture — Understanding Motives

  1. michael chmiel says:

    How can I make a donation to this clinic in Botswana?

    • Dr. Parth Mehta, Pediatric Oncologist - Botswana Dr. Parth Mehta, Pediatric Oncologist - Botswana says:

      Hi Michael. Thanks for your interest in making a donation. To donate to this clinic in Botswana, please visit this link -https://waystogive.texaschildrens.org/page.aspx?pid=1525. When filling out the form, under designation, you can choose “Other” and when the box opens up under it, you can write “Cancer Center”. Then in the comment box right below that, please write that “this donation is for Dr. Parth Mehta’s clinic in Botswana”. Sorry if this is a bit long-winded but it’s the best way to make sure it gets to the right clinic. Let us know if you have any questions and thanks again!

  2. Abby says:

    Does this little boy have an artificial eye, and was there access to emotional support from other mothers at the time of enucleation?

    Our organisation was founded in response to the experience of a Motswana little girl with unilateral Rb. Gorata (Rati) was diagnosed in Jo’burg after doctors in Francistown concluded she was too young to have cancer. Her eye was removed at Nyambagawe Hospital, Francistown in 2002, but sadly the pathology done in South Africa was misinterpreted and she did not receive post-op chemo as it was deemed unecessary.

    Rati did not receive an artificial eye and as a result, her family experienced much hostility from the communities in which they lived and worked. Through our program in Kenya, we have come to understand that providing artificial eyes is as much a life-saver as removing the cancerous eye. When parents know a prosthesis is available, they are more inclined to accept enucleation and to return to the hospital for post-operative treatment.

    Another concern raised by Rati’s family is that cancer is not openly discussed in the community (at least in their experience). People talk about “the big wound”, and there is a widespread belief that it is incurable, so why bother trying to treat it. Yes the cure rate is high in developed countries, but when you see people around you dying from cancer, the statistic doesn’t mean very much.

    About 3 children per year develop Rb in Botswana, and most do not survive due to late diagnosis, incomplete medical care and poor emotional support. Research from St Jude demonstrates that lack of emotional support is one of the major factors leading to abandonment of therapy.

    I agree with your observation that the mother probably believed loss of her child’s eye was an insurmountable disability in the context of her culture, but this could be overcome with good emotional support, education about what monocular vision really means, and provision of an artificial eye, evidenced by the mother’s change of attitude once she was back among other parents who share and understand her experiences.

    When we talk of building up retinoblastoma care in Africa (and worldwide), we cannot think of treatment in isolation, but must consider the entire package of awareness, medical care (including artificial eyes) and ongoing family support to ensure compliance with therapy and the complete wellbeing of the whole child and their family.

    FYI, there is a Setswana awareness poster on our website that you are welcome to use to promote awareness of white pupil as an early sign of Rb.
    http://www.daisyfund.org/programs/aware/action

    • Dr. Parth Mehta, Pediatric Oncologist - Botswana Dr. Parth Mehta, Pediatric Oncologist - Botswana says:

      Dear Abby,

      Thank you for your comments! Thank you for offering the use of the Setswana poster, it would certainly help our children!

      Regarding emotional support issues, the enucleation is often performed before the child presents to our service. Therefore the provision of emotional support at the time of surgery is not always made available. However, we are indeed able to provide for an artificial eye in Gaborone, although at times they are not in stock, as was the case when he presented to me post-enucleation, and we are also able to provide emotional support, however, what is available after returning home to rural settings is a different matter.

      You are likely correct that 3 children per year are identified as having Rb in Botswana, although registry data is incomplete. I do believe most patients survive these days, however, given the infrastructure in place throughout Botswana to get patients to care, and the presence of a full-time pediatric oncologist from Texas Children’s Cancer Center (TCCC) in the country for over four years. Indeed we had a wonderful campaign with the Cancer Association of Botswana last year and delivered pamphlets on common childhood cancers, including retinoblastoma, to every local clinic throughout the country. Indeed, the number of children with cancer identified in Botswana at Princess Marina Hospital has tripled with the presence of the TCCC doctors.

  3. Annalise Cawley says:

    Hello Dr Mehta,

    Just wanted to send my regards & congrats for your success across the world. I’m honored to have trained with you, and now to witness your contribution to medicine. God bless you & your team. -Annalise

    • Dr. Parth Mehta, Pediatric Oncologist - Botswana Dr. Parth Mehta, Pediatric Oncologist - Botswana says:

      Dear Dr. Cawley,

      Thank you for your kind words. It is really only a beginning, there is much to be done.

  4. Barobi (sebaga"s mum) says:

    Dr. Parth i just want you to know that while you were in Botswana, me & my family have learnt so much about cancer.You were always there for us throughout our difficult time. You were the best. May God give you more.One thing i have learnt about cancer is that it has no Mercy.Tho Sebaga is no more, i am using my experince to help other mothers, that is through councelling and providing emotional support.Its all thanks to you Doc.

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