chronic illness

Interview with Sandrine Vollebregt

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The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Sandrine Vollebregt, MD, is affiliated with Doctors of the World in Amsterdam, the Netherlands. Sandrine is a 30-year old medical doctor from the Netherlands, based in Amsterdam. She has worked in a primary health clinic for refugees on the Greek island Samos, and in acute psychiatry and the emergency department in the Netherlands. In her free time, she likes to listen to podcasts, cycle and write. 

What is your article “Help-Seeking Undocumented Migrants in the Netherlands: Mental Health, Adverse Life Events, and Living Conditions” about?

In this article we looked at how many undocumented migrants visiting a low-threshold free non-governmental health service had mental health problems. Undocumented migrants are a diverse group comprised of amongst others rejected asylum seekers or labor migrants without a visa. They do not exist officially, cannot work legally, often have poor and uncertain housing conditions, and have in practice a restricted access to health care due to logistical and cultural barriers.

Tell us a little bit about yourself and your research interests.

I am 30 years old and I live in Amsterdam, the Netherlands, in a living community. I am a medical doctor and I have a specific interest in psychiatry. Currently, I am doing a course on global health and tropical medicine at the Royal Tropical Institute. I am very interested in migrant and refugee health, as I believe dealing with migration in a way that respects human rights is one of the great issues of our time. I hope that studying the health of migrants, and looking at how this connects to migration policies, can contribute to this discussion in a positive way by providing evidence based arguments.

What drew you to this project?

I was still a medical student when I saw a call for a student to analyze data on mental health of undocumented migrants in the Netherlands. At the time I just came back from volunteering for the first time in a refugee camp on the island Lesbos in Greece, and I was shocked by the conditions that refugees live in at the borders of Europe. I wanted to learn more about the situation of refugees and undocumented migrants in the Netherlands, my own country. When I started working on this study, I also became a volunteer doctor in a mobile clinic for undocumented migrants that visits certain neighborhoods, squats and shelters. By doing this, I gained deeper connection to and understanding of the people I was studying.

What was one of the most interesting findings?

Mental health problems are very common amongst the group of undocumented migrants we studied. In our study, 81% of the people scored above a threshold for common mental disorders. Common mental disorders are anxiety disorder, depression and psychosomatic disorders. We saw that having traumatic experiences was strongly linked to mental health issues and also to psychotic phenomena, like hearing voices. The traumatic experiences that were documented in the medical files were often severe, like torture and rape.

What are you reading, listening to, and/or watching right now?

I am currently reading a Dutch book of Lieke Marsman which would in English be called ‘The opposite of a human being’, a poetic novel on climate change. I just started the podcast ‘Burn It Down’, an American podcast about a discriminatory and masculine culture at the Amsterdam Fire Department.

If there was one takeaway or action point you hope people will get from your work, what would it be?

Mental health problems are common in undocumented migrants. Health care professionals should be aware of this, explore problems actively and refer to psychological help when necessary. But on a deeper level, I hope that we start asking each other critical questions about how our policies shape the health of undocumented migrants.

Thank you for your time!

Other ways to connect:
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Blog Archive: ALS, Quality of Life, and Feeding Tubes

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This week, we revisit an article highlight that originally debuted here in May 2016. The highlight explores Pols and Limburg’s qualitative research on the role and meaning of feeding tubes in the lives of people with ALS. The article was officially released in our latest September 2016 issue of the journal, and is accessible in full here.

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Pol and Limburg begin by suggesting that while “quality of life” has been transformed into a measurement used widely in health research, it is difficult to operationalize when considering the daily, lived experiences of patients. Rather than approaching quality of life as a measure of attainment or “outcome,” the authors instead choose to reframe it as a continual process: one that is negotiated by individual patients differently. To examine what quality of life entails in a qualitative sense, the authors interviewed a population of people with ALS in the Netherlands with feeding tubes, or ALS patients considering one.

The literature on feeding tubes, the authors note, present many perspectives on the relationships between quality of life and eating. Some sources argue that feeding tubes deprive individuals of the important social aspects of eating, while others note that feeding tubes can unburden patients for whom swallowing and the physical actions of eating are difficult, uncomfortable, or impossible.

Patients and their families interviewed by the researchers, on the other hand, demonstrate such ambiguity towards feeding tubes contextually, depending on the stage of their feeding tube transition. For many, the initial decision to have a feeding tube placed in their bodies was an upsetting signal of bodily deterioration. The procedure itself, though technically minimally invasive, was also viewed with trepidation by patients. They worried about the hospital stay, and whether or not their body would be strong enough to adapt to the tube quickly. Pols and Limburg found that for those who had undergone the procedure, “there was a remarkable consensus among patients in their evaluation of tube placement, with the main variations mentioning just how terrible it had been.” The authors later note that some patients continued to view the feeding tube negatively after it was placed, envisioning it as an unnatural, upsetting addition to their bodies. Others described it as a “necessity” that came with quality of life benefits, although it was not pleasant to have attached to their bodies.

However, for many patients who had feeding tubes already implanted at the time of the study, the response could be notably positive. These participants noted that the devices restored their health and function, and lessened distressing symptoms like choking and an inability to swallow. For one patient, the feeding tube ensured that she received the appropriate calories, such that any food she decided to eat normally could be at her discretion. Other patients who cared less about eating a range of foods appreciated that the feeding tube rid them of the need to worry about what could be easily consumed.

The authors conclude that “the feeding tube can best be understood not as an intervention that causes ‘impacts on quality of life’, but as a technology or prosthesis that may bring different qualities and appreciations that may shift over time.” They add that the feeding tube acts as an intervention that re-orders daily life for patients coping with the a ‘new normal’ of chronic illness: rather than serving to balance “good” and “bad” qualities, as outlined in the disability paradox. Lastly, they remind readers that instrumentalizing “quality of life” risks losing these facets of illness experience. This term is deeply contextual, and responsive to the needs, expectations, and hopes of each patient undergoing treatments or coping with chronic conditions.

Article Highlight: Feeding Tubes and Quality of Life in ALS Patients

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This week on the blog, we are highlighting Jeannette Pols and Sarah Limburg’s article “A Matter of Taste? Quality of Life in Day-to-Day Living with ALS and a Feeding Tube.” The article is open-access and can be read in full here on our publisher’s website.

The authors begin by suggesting that while “quality of life” has been transformed into a measurement used widely in health research, it is difficult to operationalize when considering the daily, lived experiences of patients. Rather than approaching quality of life as a measure of attainment or “outcome,” the authors instead choose to reframe it as a continual process: one that is negotiated by individual patients differently. To examine what quality of life entails in a qualitative sense, the authors interviewed a population of people with ALS in the Netherlands with feeding tubes, or ALS patients considering one.

The literature on feeding tubes, the authors note, present many perspectives on the relationships between quality of life and eating. Some sources argue that feeding tubes deprive individuals of the important social aspects of eating, while others note that feeding tubes can unburden patients for whom swallowing and the physical actions of eating are difficult, uncomfortable, or impossible.

Patients and their families interviewed by the researchers, on the other hand, demonstrate such ambiguity towards feeding tubes contextually, depending on the stage of their feeding tube transition. For many, the initial decision to have a feeding tube placed in their bodies was an upsetting signal of bodily deterioration. The procedure itself, though technically minimally invasive, was also viewed with trepidation by patients. They worried about the hospital stay, and whether or not their body would be strong enough to adapt to the tube quickly. Pols and Limburg found that for those who had undergone the procedure, “there was a remarkable consensus among patients in their evaluation of tube placement, with the main variations mentioning just how terrible it had been.” The authors later note that some patients continued to view the feeding tube negatively after it was placed, envisioning it as an unnatural, upsetting addition to their bodies. Others described it as a “necessity” that came with quality of life benefits, although it was not pleasant to have attached to their bodies.

However, for many patients who had feeding tubes already implanted at the time of the study, the response could be notably positive. These participants noted that the devices restored their health and function, and lessened distressing symptoms like choking and an inability to swallow. For one patient, the feeding tube ensured that she received the appropriate calories, such that any food she decided to eat normally could be at her discretion. Other patients who cared less about eating a range of foods appreciated that the feeding tube rid them of the need to worry about what could be easily consumed.

The authors conclude that “the feeding tube can best be understood not as an intervention that causes ‘impacts on quality of life’, but as a technology or prosthesis that may bring different qualities and appreciations that may shift over time.” They add that the feeding tube acts as an intervention that re-orders daily life for patients coping with the a ‘new normal’ of chronic illness: rather than serving to balance “good” and “bad” qualities, as outlined in the disability paradox. Lastly, they remind readers that instrumentalizing “quality of life” risks losing these facets of illness experience. This term is deeply contextual, and responsive to the needs, expectations, and hopes of each patient undergoing treatments or coping with chronic conditions.