Medical mistrust grounded in structural and systemic racism affects HIV care for Black women in the US South

Medical mistrust grounded in structural and systemic racism affects HIV care for Black women in the US South


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For Black women in the southern United States, mistrust of the health care system that is grounded in structural and systemic racism is a key factor affecting participation in HIV prevention and treatment services, reports a study in the September/October issue of The Journal of the Association of Nurses in AIDS Care (JANAC).

“[Our] results indicate that there are barriers to the utilization of health services that are grounded in personal experiences, historical mistrust for the health care system and systemic racism,” according to the qualitative study by Schenita D. Randolph, Ph.D., MPH, of Duke University School of Nursing and colleagues. “HIV programs serving Black women should include conversations around structural racism and trust for both providers and patients.”

“Dr. Randolph’s findings are critical because they demonstrate women’s own views of the critical and sometimes subtle ways in which systemic racism can have dramatic effects on African-American women’s health through multiple pathways,” said Dr. Carol Golin, Professor of Medicine and Public Health at the University of North Carolina at Chapel Hill. “This suggests that working to dismantle racism is a fundamental step that is needed to fully address health disparities.” Dr. Golin was Principal Investigator of the community-based parent study in which the data were collected.

New Insights on Obstacles to Black Women’s Participation in HIV Care

Disparities in HIV risk are an important public health issue for Black women, particularly in the South. “Black women have nearly 20 times the risk of white women in being infected with HIV, and lifetime HIV risk is greatest for people living in the southern United States,” according to the authors.

In a previous study, authors identified Black women’s perceptions of structural racism and discrimination, and medical mistrust, as critical factors in the development of HIV prevention programs and interventions. The new study further explored those perspectives through a series of focus groups with African-American women living in low-income housing communities in one small city in the South.

Although they did not use those exact terms, the participants consistently communicated that the concepts of structural racism and discrimination, and medical mistrust, had a significant impact on their health care decisions and participation. From the focus group discussions, four subthemes emerged:

  • Decreased trust in health care advice and instructions. Based on their experiences, some of the women perceived that health care professionals give incomplete or even false medical information to Black patients. They also viewed some medical facilities as being more trustworthy or more receptive to Black patients than others.
  • Systems and structures placing Black women at a disadvantage. “Institutional and systematic regulations”—especially policies related to living in low-income housing—contributed to mistrust of the health care system. Participants perceived that that the combination of being Black and being a woman added “a layer of challenges” to accessing health care. The women felt there were “little to no resources in the community to access affordable health care.”
  • Lack of effective communication. The women reported experiences with lack of communication in the health care system, including misinformation and not receiving details of the care being given. Some women did report effective communication with providers—showing that taking time to build good communication and relationships can lead to improved health behaviors.
  • Need for empowerment in clinical encounters. Perceived racial bias in dealings with health care providers motivated the women to be more assertive in advocating for their rights. They felt they should be able to question health care recommendations and demand more information from providers.

“These findings support the importance for health care providers, as well as researchers, to be aware of systematic racism and structural discrimination that may be overt or covert in our health care systems,” Dr. Randolph and coauthors write. They note that the focus group participants voiced a strong preference for HIV-related messaging and programming to be delivered by “trusted individuals or gatekeepers” in the community, whom they viewed are more relatable than health care providers. The findings also highlight the need for “careful attention to interpersonal relationships and communication in the clinical encounter with Black women.”

“Findings on the understanding of Black women’s skepticism of medical providers and systems reinforced and expanded our view of the importance of addressing these trust issues in future HIV prevention efforts with this population,” the researchers write. “More importantly,” Dr. Randolph comments, “findings expanded our view of the importance of addressing how our systems that are grounded in historical racism, contribute intentionally or unintentionally to the inequities of care among Black women.”

Dr. Randolph and coauthors conclude: “This long history will require that critical conversations about structural and systemic racism and health take place to begin breaking deeply ingrained cycles of discrimination.”


Racial discrimination may adversely impact cognition in African Americans


More information:
Randolph, Schenita D. et al. How Perceived Structural Racism and Discrimination and Medical Mistrust in the Health System Influences Participation in HIV Health Services for Black Women Living in the United States South: A Qualitative, Descriptive Study. Journal of the Association of Nurses in AIDS Care. September-October 2020 – Volume 31 – Issue 5 – p 598-605 DOI: 10.1097/JNC.0000000000000189

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Medical mistrust grounded in structural and systemic racism affects HIV care for Black women in the US South (2020, September 17)
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What causes such big differences in cities' tolls?

What causes such big differences in cities’ tolls?


COVID-19 data as of May 31, 2020. Credit: The Conversation, CC-BY-ND Source: U.S. Census, NOAA, City of New York, City of San Francisco

San Francisco and New York City both reported their first COVID-19 cases during the first week of March. On March 16, San Francisco announced it was ordering residents to stay home to avoid spreading the coronavirus, and New York did the same less than a week later. But by the end of May, while San Francisco had attributed 43 deaths to COVID-19, New York City’s death count was over 20,000.

What explains the stark difference in COVID-19-related deaths between these two cities? Is the delay in the stay-at-home order responsible? What about city-specific measures taken to mitigate COVID-19 before the order? Is something else going on?

The divergent trajectories of San Francisco and New York City, while especially striking, are not unique. Worldwide, COVID-19 is having highly variable effects. Within the U.S., infections, hospitalizations and deaths have skyrocketed in nearly all major cities in the Northeast while remaining fairly low in some other metropolitan centers, such as Houston, Phoenix and San Diego.

How cities and states implemented public health interventions, such as school closures and stay-at-home orders, has varied widely. Comparing these interventions, whether they worked and for whom, can provide insights about the disease and help improve future policy decisions. But accurate comparisons aren’t simple.

The range of COVID-19 interventions implemented across the U.S. and worldwide was not random, making them difficult to compare. Among other things, population density, household sizes, public transportation use and hospital capacity may have contributed to the differences in COVID-19 deaths in San Francisco and New York City. These sorts of differences complicate analyses of the effectiveness of responses to the COVID-19 pandemic.

As a biostatistician and an epidemiologist, we use statistical methods to sort out causes and effects by controlling for the differences between communities. With COVID-19, we’ve often seen comparisons that don’t adjust for these differences. The following experiment shows why that can be a problem.

Coronavirus deaths in San Francisco vs. New York: What causes such big differences in cities' tolls?
Credit: Laura Balzer/Github, CC BY-ND

City simulations reveal a paradox

To illustrate the dangers of comparisons that fail to adjust for differences, we set up a simple computer simulation with only three hypothetical variables: city size, timing of stay-at-home orders and cumulative COVID-19 deaths by May 15.

For 300 simulated cities, we plotted COVID-19 deaths by the delay time, defined as the number of days between March 1 and the order being issued. Among cities of comparable size, delays in implementing stay-at-home orders are associated with more COVID-19 deaths—specifically, 40-63 more deaths are expected for each 10-day delay. The hypothetical policy recommendation from this analysis would be for immediate implementation of stay-at-home orders.

Now consider a plot of the same 300 simulated cities that doesn’t take city size into consideration. The relationship between delays and deaths is reversed: Earlier implementation in this simulation is strongly associated with more deaths, and later implementation with fewer deaths. This apparent paradox occurs because of the causal relationships between city size, delays and COVID-19 deaths. Strong connections or associations between two variables don’t guarantee that one variable causes another. Correlation does not imply causation.

Failing to properly address these relationships can create misperceptions with dramatic implications for policymakers. In these simulations, the analysis that fails to consider city size would lead to an erroneous policy recommendation to delay or never implement stay-at-home orders.

Coronavirus deaths in San Francisco vs. New York: What causes such big differences in cities' tolls?
Credit: Laura Balzer/Github, CC BY-ND

It gets more complicated

Of course, causal inference in real life is more complicated than in a computer simulation with only three variables.

In addition to confounding factors like community size, substantial evidence suggests that public health interventions do not protect all people equally.

In San Francisco, stark disparities have emerged. For example, comprehensive testing of the Mission District revealed 95% of people testing positive were Hispanic. Factors like socioeconomic status, race and ethnicity, and many others, vary widely among communities and can impact COVID-19 infection and death rates. Differences among community residents makes appropriate interpretation of comparisons, such as between San Francisco and New York, even more difficult.

So how do we effectively learn in the current environment?

While especially pressing now, the analytic challenges posed by COVID-19 are not new. Public health experts have long used data from nonrandomized studies—even in the midst of epidemics. During the Cholera outbreak in London in 1849, John Snow, famed in epidemiologic circles, used available data, simple tools and careful consideration to identify a water pump as a source of disease spread. Evidence-based decisions require both data and appropriate methods to analyze data.

Cities and communities worldwide vary in important ways that can complicate public health research. The rigorous application of causal inference methods that can take into account differences between populations is necessary to guide policy and to avoid misinformed conclusions.


Follow the latest news on the coronavirus (COVID-19) outbreak


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How our brains can be manipulated to tribalism

How our brains can be manipulated to tribalism


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Tribalism has become a signature of America within and without since the election of President Trump. The nation has parted ways with international allies, left the rest of the world in their effort to fight the climate change, and most recently the pandemic, by leaving the World Health Organization. Even the pandemic was not a serious issue of importance to our leaders. We did not care much about what was happening in the rest of the world, as opposed to the time of previous pandemics when we were on the ground in those countries helping block the progress so long as it was China’s or the European Union’s problem. This marks drastic change from previous U.S. altruistic attitude, including during the World War II.

Whether Trump is the cause or effect of the changes in America’s collective attitude, an attribute of our current president is his eagerness and ability to use fear for intimidation of those who disagree with him, and subordination and shepherding of those who support him.

Fear is arguably as old as life. It is deeply ingrained in the living organisms that have survived extinction through billions of years of evolution. Its roots are deep in our core psychological and biological being, and it is one of our most intimate feelings. Danger and war are as old as human history, and so are politics and religion.

I am a psychiatrist and neuroscientist specializing in fear and trauma, and I have some thoughts on how politics, fear and tribalism are intertwined in the current events.

We learn fear from tribe mates

Like other animals, humans can learn fear from experience, such as being attacked by a predator, or witnessing a predator attacking another human. Furthermore, we learn fear by instructions, such as being told there is a predator nearby.

Learning from our tribe mates is an evolutionary advantage that has prevented us from repeating dangerous experiences of other humans. We have a tendency to trust our tribe mates and authorities, especially when it comes to danger. It is adaptive: Parents and wise old men told us not to eat a special plant, or not to go to an area in the woods, or we would be hurt. By trusting them, we would not die like a great-grandfather who died eating that plant. This way, we accumulated knowledge.

Tribalism has been an inherent part of human history, and is closely linked with fear. There has always been competition between groups of humans in different ways and with different faces, from brutal wartime nationalism to a strong loyalty to a football team. Evidence from cultural neuroscience shows that our brains even respond differently at an unconscious level simply to the view of faces from other races or cultures.

At a tribal level, people are more emotional and consequently less logical: Fans of both teams pray for their team to win, hoping God will take sides in a game. On the other hand, we regress to tribalism when afraid. This is an evolutionary advantage that would lead to the group cohesion and help us fight the other tribes to survive.

Tribalism is the biological loophole that many politicians have banked on for a long time: tapping into our fears and tribal instincts. Abuse of fear has killed in many faces: extreme nationalism, Nazism, the Ku Klux Klan and religious tribalism have all led to heartless killing of millions.

The typical pattern is to give the other humans a different label than us, perceive them as less than us, who are going to harm us or our resources, and to turn the other group into a concept. It does not have to necessarily be race or nationality. It can be any real or imaginary difference: liberals, conservatives, Middle Easterners, white men, the right, the left, Muslims, Jews, Christians, Sikhs. The list goes on and on.

This attitude is a hallmark of the current president. You could be a Chinese, a Mexican, a Muslim, a Democrat, a liberal, a reporter or a woman. So long as you do not belong to his immediate or larger perceived tribe, he portrays you as subhuman, less worthy, and an enemy.

Retweeting “The only good Democrat is a dead Democrat” is a recent example of how he feeds, and feeds off of such divisive and dehumanizing tribalism.

When building tribal boundaries between “us” and “them,” politicians have managed very well to create virtual groups of people that do not communicate and hate without even knowing each other: This is the human animal in action!

Fear is uninformed, illogical and often dumb

Very often my patients with phobias start with: “I know it is stupid, but I am afraid of spiders.” Or it may be dogs or cats, or something else. And I always reply: “It is not stupid, it is illogical.” We humans have different functions in the brain, and fear oftentimes bypasses logic. In situations of danger, we ought to be fast: First run or kill, then think.

This human tendency is meat to the politicians who want to exploit fear: If you grew up only around people who look like you, only listened to one media outlet and heard from the old uncle that those who look or think differently hate you and are dangerous, the inherent fear and hatred toward those unseen people is an understandable (but flawed) result.

To win us, politicians, sometimes with the media’s help, do their best to keep us separated, to keep the real or imaginary “others” just a “concept.” Because if we spend time with others, talk to them and eat with them, we will learn that they are like us: humans with all the strengths and weaknesses that we possess. Some are strong, some are weak, some are funny, some are dumb, some are nice and some not too nice.

Fear can easily turn violent

There is a reason that the response to fear is called the “fight or flight” response. That response has helped us survive the predators and other tribes that have wanted to kill us. But again, it is another loophole in our biology to be abused. By scaring us, the demagogues turn on our aggression toward “the others,” whether in the form of vandalizing their temples, harassing them on the social media, of killing them in cold blood.

When demagogues manage to get hold of our fear circuitry, we often regress to illogical, tribal and aggressive human animals, becoming weapons ourselves—weapons that politicians use for their own agenda.

The irony of evolution is that while those attached to tribal ideologies of racism and nationalism perceive themselves as superior to others, in reality they are acting on a more primitive, less evolved and more animal level.


The politics of fear: How it manipulates us to tribalism


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Trump, the politics of fear and racism: How our brains can be manipulated to tribalism (2020, June 2)
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More profound than previously reported

More profound than previously reported


Credit: CC0 Public Domain

The effects of exercise on metabolism are even greater than scientists believed. That’s the finding of a unique study published today in Cardiovascular Research, a journal of the European Society of Cardiology (ESC).

The study is the first to examine the metabolic effects of exercise while carefully controlling for differences between participants in diet, stress, sleep patterns, and work environment.

“These results show that metabolic adaptation to exercise is far more profound than previously reported,” said senior author Dr. John F. O’Sullivan of the University of Sydney, Australia. “The results increase our knowledge of the widespread benefits of exercise on metabolism and reveal for the first time the true magnitude of these effects. This reinforces the mandate for exercise as a critical part of programmes to prevent cardiovascular disease.”

One of the major challenges when studying the effects of exercise is controlling for factors that differ between participants and could influence the results. For example: age, gender, weight, baseline fitness, diet (some healthy, some very unhealthy), sleep patterns, jobs (physical work versus a desk job), alcohol, and smoking.

“Our motivation for this study was to overcome this limitation by studying exercise under controlled conditions, thereby revealing the true extent of effects on the body,” said Dr. O’Sullivan. “Therefore, we used a cohort of newly-enlisted healthy male soldiers of similar age and baseline fitness who lived in the same domicile, had the same sleep patterns, ate the same food, and underwent the same exercise regimen.”

One of the major benefits of exercise is on metabolism, which is how the body converts food into energy and eliminates waste. Substances produced during metabolism are called metabolites. “Metabolites are the intermediates of the metabolic machinery in the body and can signal how metabolic health is changing in response to exercise,” explained Dr. O’Sullivan.

The researchers measured approximately 200 metabolites in the blood of 52 soldiers before and after an 80-day aerobic and strength exercise programme and related these to changes in fitness.

Compared to previous studies, the researchers found dramatic changes in many metabolites. Trained, energy-efficient muscle used far more fuel—for example fat—than shown ever before. The researchers also captured heretofore unseen, in terms of scale and scope, changes in levels of factors derived from the gut, factors involved in blood clotting, breakdown products of protein, and factors involved in opening up blood vessels to increase blood flow.

Participants who did not experience these metabolic benefits of exercise had higher levels of a metabolite called DMGV. “This is intriguing because a recent study also found that this metabolite predicted who did not benefit from exercise,” said Dr. O’Sullivan. “DMGV levels are influenced by genetics and diet, rising with sugary drinks and falling with vegetables and fibre. Measuring DMGV may identify people who need strategies other than exercise to reduce their cardiovascular risk.”

He concluded: “The power of exercise to boost metabolism is on top of its positive effects on blood pressure, heart rate, fitness, body fat, and body weight. Our findings cement the central role of exercise in preventing cardiovascular disease.”


Exercise works for those beginning cancer treatment


More information:
Yen Chin Koay et al, Effect of chronic exercise in healthy young male adults: a metabolomic analysis, Cardiovascular Research (2020). DOI: 10.1093/cvr/cvaa051

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Benefits of exercise on metabolism: More profound than previously reported (2020, April 2)
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US, UK approve Roche's $4.3 bn purchase of gene therapy group Spark

US, UK approve Roche’s $4.3 bn purchase of gene therapy group Spark


The US Federal Trade Commission (FTC) “unconditionally cleared Roche’s pending acquisition of Spark”, the Swiss company said in a statement

Swiss pharmaceuticals giant Roche said it had received the necessary approval from competition authorities to acquire US gene-therapy group Spark, after the two companies reached a multibillion-dollar deal earlier this year.

Founded in 2013, Spark Therapeutics specialises in a new and growing segment of medicine for genetic diseases such as blindness, haemophilia, and neurodegenerative conditions.

The US Federal Trade Commission (FTC) “unconditionally cleared Roche’s pending acquisition of Spark”, the Swiss company said in a statement on Monday.

“All antitrust approvals required to complete the offer have now been received,” it said, after confirming earlier Monday that Britain’s Competition and Markets Authority had also cleared the pending acquisition.

Roche and Spark sealed the deal worth $4.3 billion (3.7 billion euros) in February.

In a separate statement, the FTC said it had made its decision “following an exhaustive, 10-month investigation” into potential competitive harm that could result from the move.

Spark’s biggest treatment under study is a therapy for haemophilia, a disorder where blood does not clot properly to stop bleeding.

“A key question in the investigation was whether Roche would have the incentive to delay or discontinue Spark’s developmental gene therapy for hemophilia A,” the FTC said.

“The evidence… did not indicate that Roche would have the incentive to delay or terminate” Spark’s therapy development, or affect Roche’s haemophilia drug Hemlibra, it concluded.

Roche stocks rose 1.18 percent to 304.10 Swiss Francs Monday on the Swiss stock exchange.


Roche to buy US gene therapy group Spark for $4.3 bn


© 2019 AFP

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US, UK approve Roche’s $4.3 bn purchase of gene therapy group Spark (2019, December 17)
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The most common plumbing emergencies

Overruning bathroom

Whether your toilet is clogged or has a malfunctioning float device, the very first step to take is turning off the water circulation. The water shutoff is located at the end of the water line on the side of the bathroom, as well as should be transformed completely counterclockwise. As soon as the water circulation into the bathroom is stopped, the blockage or device failure can be dealt with.

Unclogging a bathroom might be as simple as using company upright pressure with a plunger. More major obstructions might call for an auger, which can be utilized to fish out particles that is obstructing the flow of water. As soon as the obstruction is removed, reset the float system as well as activate the water valve.

Stopped-up sink drainpipe

The best way to prevent a clogged sink drainpipe is to prevent discarding oil, coffee premises, and other thick material down the tubes. Nevertheless, also the most cautious house owner often needs to handle this annoyance. If utilizing a plunger to clear product from the drainpipe does not work an auger (or “serpent’) might be needed. An auger is easy to use with a little practice as well as determination.

Ruptured pipelines

By much the most destructive plumbing emergency, a ruptured pipe can release up to 100 gallons in an 8 hour period. If a pipeline does ruptured, immediately closed off the water supply.

Dripping pipelines

Your technique to taking care of a leaky pipe depends on where specifically the water is leaking. If water leakages from the pipe, a rubber patch might do the technique.

Sump pump failing

If the sump pump is not working, get rid of the screen to see to it particles is not avoiding activity of the impeller. Your pump may not be obtaining enough electrical power or have a faulty float switch if the impeller is clear. If the pump has been running for a prolonged period of time, it might be closing down due to thermal overload.

Water heater malfunction

Common water heater issues consist of a dripping storage tank, water that is either too hot or as well cool, water that has a weird shade or odor, as well as noises coming from the hot water heater. Call a professional plumber for aid if the heating unit is leaking. If there is no leakage, purging the water container may solve color as well as smell troubles, as well as improve the heater’s efficiency.

The water shutoff is located at the bottom of the water line on the side of the bathroom, and must be transformed completely counterclockwise. Your method to dealing with a dripping pipe depends on where exactly the water is leaking. If water leakages from the pipe, a rubber patch might do the trick. Common water heating unit problems include a dripping container, water that is either also warm or also cold, water that has a weird color or smell, and also noises coming from the water heating unit. If there is no leak, purging the water tank may solve color and odor problems, as well as improve the heater’s effectiveness.

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Tiny wearable cameras may improve quality of life in heart failure patients


The ever-present devices that seem to track all our moves can be annoying, intrusive or worse, but for heart failure patients, tiny wearable cameras could prove life-enhancing, according to research presented today at ESC Congress 2019 together with the World Congress of Cardiology.

Minute-by-minute images captured by these little “eyes” provide valuable data on diet, exercise and medication adherence, that can then be used to fine-tune self-management.

“The cameras bring more information to health professionals to really understand the lived experience of heart failure patients and their unique challenges,” stated study first author Susie Cartledge, a registered nurse and dean’s postdoctoral research fellow at Deakin University’s Institute for Physical Activity and Nutrition in Melbourne, Australia. “This is a level of detail and context that will help us tailor their care.”

Something as seemingly trivial as drinking too much fluid—which cameras can “see”—can tax an already burdened heart, leading to a potentially deadly hospital stay.

Heart failure is a chronic condition where the heart isn’t pumping as well as it should be, so the body isn’t getting enough oxygen. There is no cure and limited treatments, meaning that self-care is paramount. Healthcare professionals have traditionally gleaned information on patients’ daily activities from self-reports, which can be unreliable. This “life-logging technique” is still in its infancy, but studies have shown that it gleans useful data.

For this feasibility study, Dr. Cartledge and her colleagues recruited 30 individuals with advanced (NYHA II-III) heart failure from a Melbourne cardiology practice. Participants’ mean age was 73.6, and 60% were male.

Patients attached a wide-angle “narrative clip” to their clothing at about chest height. The cameras, barely two centimetres squared, were worn from morning to night and took still images every 30 seconds.

“You can really just see the context of the patient’s world from chest height,” explained Dr. Cartledge. “We saw their bingo score cards, their families, their friends but we only saw them if they stood in front of a mirror. We felt like we had been with the patient for the day.”

The images revealed no “scandalous” behaviour on the part of the participants, said Dr. Cartledge, but they did highlight areas for improvement. Patients in general needed to increase their exercise and reduce sedentary behaviour that was typically associated with screen time. Participants could also generally improve their diets, for example there was one participant who could cut back on diet sodas, beers at bingo, and cigarettes.

“We can use this information to have a discussion with the patient. Yesterday, one man’s pills sat out on his table for ages before he took them,” continued Dr. Cartledge, who would counsel this patient to take his medication sooner.

Almost all of the participants (93%) said they were happy wearing the camera (the remaining two were neutral). Some went so far as to report that they were reassured “someone was watching over them” or that the cameras spurred them to engage in “good behaviour.” All participants had the option of deleting photos before the research team saw them.

But capturing the images and getting consent from patients was the easy part. By the end of the 30-day study period the authors had a library of more than 600,000 photos which they had to sort through and analyse.

Machine learning techniques grouped the images into four domains: medication management, dietary intake, meal preparation and physical activity. This process had mixed results. It was most successful in identifying diet-related photos (an average of 49% of the time), followed by information on meals (average 40%) and physical activity (average 31%). Drug adherence was the least precise, with an average of only 6%. This may be because prescriptions come in so many different forms—pill strips, bottles, sprays and puffers—making them hard to recognise.

“The sorting is actually extremely difficult,” admitted Dr. Cartledge. She and her colleagues enlisted the help of artificial intelligence experts at Ireland’s Dublin City University to build a more specific platform. Eventually, the team envisions a relatively low-cost venture using a search engine platform and reusable cameras.

The sheer number of images was a limitation, acknowledged the author. And the heart failure findings may not be applicable to other populations, however the study methodology could be implemented for other chronic disease populations. Members of the study group were older, had advanced disease and came from a lower socioeconomic neighbourhood. The author predicted that the system, once refined, will be most helpful for guiding newly diagnosed patients.

“This is the first step,” Dr. Cartledge said. “Patients are happy to wear it. We can see the context of the challenges they face. The next step is to build an artificial intelligence platform to sort the images out in a quick and meaningful way so healthcare practitioners can use it. We’re entering a new frontier.”


Exercise may improve memory in heart failure patients


More information:
The abstract “Seeing is believing: the feasibility and acceptability of using wearable cameras to enhance self-management of heart failure” will be presented during Nursing and Allied Health Professions Investigator Award, Saturday 31 August at 12:40 to 13:40 in Reykjavik-Village 2.

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Australia cancer sufferer first to use new assisted dying law


A 61-year-old cancer patient has become the first person in over two decades to die under controversial assisted dying laws in Australia, a charity said.

Kerry Robertson died in July, three months after the mother-of-two ceased treatment for metastatic breast cancer, the support group Go Gentle Australia said Sunday.

The state of Victoria passed a law in 2017 to legalise the practice, which went into effect this June. Other states are now expected to follow suit.

Robertson, who ended her life in the southeastern town of Bendigo, was diagnosed with breast cancer in 2010—which then spread into her bones, lung, brain, and liver.

She decided to stop receiving treatment in March when the side effects of chemotherapy were no longer manageable and took medication to end her life after a 26-day approval process, the charity said.

“It was quick, she was ready to go. Her body was failing her and she was in incredible pain. She’d been in pain for a long time,” her daughter Jacqui said in a statement.

Euthanasia had previously been legal in Australia’s Northern Territory, but those laws were overturned in a contentious move by the federal government in 1997.


Australian state takes step toward legalizing euthanasia


© 2019 AFP

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Australia cancer sufferer first to use new assisted dying law (2019, August 5)
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Brain changes noted in holocaust survivors and their children

Brain changes noted in holocaust survivors and their children


(HealthDay)—Holocaust survivors may have suffered permanent harmful changes to their brain structure, and the brains of their children and grandchildren may also be affected, a small study reveals.

“After more than 70 years, the impact of surviving the Holocaust on brain function is significant,” said researcher Ivan Rektor, a neurologist from Brno, Czech Republic.

MRI scans of 28 Holocaust survivors showed they had a significantly decreased volume of gray matter in the brain compared to 28 people in the same age group without a personal or family history of the Holocaust. Their average age was about 80.

The affected parts of the brain are responsible for stress response, memory, motivation, emotion, learning and behavior, the study authors said.

Reductions in gray matter were significantly higher among Holocaust survivors who were younger than 12 in 1945, compared to those who were older. This may be because a child’s developing brain is more vulnerable to stress, the researchers suggested.

Gray matter reductions in the Holocaust survivors were found in areas of the brain associated with post-traumatic stress disorder (PTSD) in combat veterans and people who suffered high levels of stress early in life.

But gray matter reductions found elsewhere in the brains of Holocaust survivors were far greater than previously found in people with PTSD, the findings showed.

The study can’t prove that the horrors of the Nazi regime actually caused the changes in brain structure seen among survivors and their descendants.

However, the researchers are now assessing Holocaust survivors’ children and grandchildren. And early findings in the children show reduced connectivity between brain structures involved in processing emotion and memory.

“We revealed substantial differences in the brain structures … between Holocaust survivors and controls. Early results show this is also the case in children of survivors, too,” Rektor said in a European Academy of Neurology news release.

“Our hope is that these findings and our ongoing research will allow us to understand more about the effect of these experiences in order to focus therapy to support survivors’ and their descendants’ resilience and growth,” Rektor said. “We may also reveal strategies that Holocaust survivors used to cope with trauma during their later lives and to pass on their experience to further generations.”

The study results were recently presented at a European Academy of Neurology meeting in Oslo, Norway. Data and conclusions presented at meetings are usually considered preliminary until published in a peer-reviewed medical journal.


New study reveals biological toll on brain function of Holocaust survivors


More information:
The U.S. National Institute of Mental Health has more on stress.

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Brain changes noted in holocaust survivors and their children (2019, July 26)
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Study asked people with mental health disorders to recommend changes to international diagnostic guidelines

Study asked people with mental health disorders to recommend changes to international diagnostic guidelines


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A Rutgers University researcher contributed to the first study to seek input from people with common mental health issues on how their disorders are described in diagnostic guidelines.

The study, which was conducted by researchers in the United Kingdom and the United States in collaboration with the World Health Organization Department of Mental Health, appears in The Lancet.

“Including people’s personal experiences with disorders in diagnostic manuals will improve their access to treatment and reduce stigma,” said Margaret Swarbrick, an adjunct associate professor and Director of Practice Innovation and Wellness at Rutgers University Behavioral Health Care, who collaborated with Kathleen M. Pike, executive director and scientific co-director of the Global Mental Health Program on the U.S. portion of the study.

The researchers talked to people with five common disorders—schizophrenia, bipolar disorder type 1, depressive episode, personality disorder and generalized anxiety disorder—about how their conditions should be described in the upcoming 11th revision of the International Classification of Diseases and Related Health Problems (ICD-11). The ICD is the most widely used classification system for mental disorders. This is the first time people with diagnosed mental health disorders who are not health practitioners have been invited to give input on any published mental health diagnostic guidelines.

The project surveyed 157 people diagnosed with these conditions in the United Kingdom, India and the United States. The participants reviewed an initial draft of the ICD-11 chapter on mental, behavioral and neurodevelopmental disorders and recommended changes to more accurately reflect their experiences and/or remove objectionable language.

Many participants said the draft omitted emotional and psychological experiences they regularly have. People with schizophrenia added references to anger, fear, memory difficulties, isolation and difficulty communicating internal experiences. People with bipolar disorder added anxiety, anger, nausea and increased creativity. People with generalized anxiety disorder added nausea and anger. People with depression added pain and anxiety. People with personality disorder added distress and vulnerability to exploitation.

The participants also suggested removing confusing or stigmatizing terms such as “retardation,” “neuro-vegetative,” “bizarre,” “disorganized” and “maladaptive.”

“We discovered that the current draft reflected an external perspective of these conditions rather than the perspective of the person’s lived experience,” Swarbrick said. “This is a needed perspective for clinicians and researchers. Participants appreciated the non-technical summaries, which suggest that using such common language would go a long way in bridging the communication gap between the people being diagnosed and clinicians.”


WHO mental health guidelines could better capture ‘lived experience’


More information:
Corinna Hackmann et al, Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE Study): an international qualitative study, The Lancet Psychiatry (2019). DOI: 10.1016/S2215-0366(19)30093-8

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Rutgers University

Citation:
Study asked people with mental health disorders to recommend changes to international diagnostic guidelines (2019, July 16)
retrieved 16 July 2019
from https://medicalxpress.com/news/2019-07-people-mental-health-disorders-international.html

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