Resource: Mapping the Gaps between Expert and Public Understandings of Fetal Alcohol Spectrum Disorder in Manitoba

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Click to download full report

Introduction:

Fetal alcohol spectrum disorder (FASD) is an important social issue in Manitoba fraught with misconceptions and communications challenges. Communicating with Manitobans about FASD is difficult because people’s thoughts about this issue hinge on deeply held and widely shared beliefs about motherhood, substance use, choice, responsibility, and morality. To engage members of the public in thinking about FASD in ways that boost support for the policies and programs that are necessary to address it, communicators need an empirically based framing strategy that anticipates and redirects public thinking.

Communicating effectively about FASD first requires a clear sense of the core concepts that the public needs to understand in order to support the initiatives that evidence suggests will create change. We call this set of concepts the untranslated story of FASD. The untranslated story unites researchers, practitioners, and advocates around a set of core principles that they want to be able to communicate to the public about FASD.

After we distil the principles that need to be communicated, we describe the patterns of thinking that underlie how Manitobans think about FASD. This phase of research investigates how people think about FASD by examining the patterns that appear in how they talk about the issue. Working from over 650 pages of interview transcripts, we identify the common understandings and implicit assumptions that shape how the public reasons about FASD and related issues. This focus on common understandings does not ignore the fact that people also have different ways of understanding this issue. However, analyzing the patterns that are shared across a diverse group of people allows us to develop reframing strategies that will be most effective in changing the public discourse about FASD in Manitoba, ultimately generating support for crucial programs and policies.

This report proceeds as follows:

• We outline the untranslated story of FASD. This set of principles reflects the field’s understanding of what FASD is, how alcohol affects fetal development, why women consume alcohol while pregnant, what the effects of FASD are, and how FASD can be prevented and addressed. This untranslated story represents the content to be communicated to the public with a reframing strategy.

• We describe the cultural models —anthropologists’ term for shared but implicit understandings, assumptions, and patterns of reasoning—that shape how Manitobans think about FASD. We review patterns of thinking related to pregnancy, alcohol use and addiction, social factors, causes and effects of FASD, and ways to address them.

• We then map the gaps between the field’s and the public’s perspectives and describe points at which these understandings overlap and diverge. This analysis highlights the key challenges in communicating about FASD. Seeing the Spectrum: Mapping the Gaps between Expert and Public Understandings of Fetal Alcohol Spectrum Disorder in Manitoba.

• Finally, we present a set of preliminary framing recommendations that emerge from this map the gaps analysis. A description of the methods used in this research, and participant demographic information, can be found in the Appendix.

Click to download report: Manitoba-FASD-Strategic-Meeting-Report-May-2017

 

Two Recent Approaches to FASD Diagnosis

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Overview

Over the last 50 years, a significant amount of research and clinical expertise has been devoted to characterizing the effects of prenatal alcohol exposure on the developing fetus. Simultaneously, a variety of systems and approaches have also emerged to provide diagnostic guidance for the related diagnoses.

Fetal Alcohol Spectrum Disorder (FASD) is now widely used to describe the resultant sequelae associated with prenatal alcohol exposure. Despite ongoing pressure to develop a consensus around diagnostic approaches for FASD, different multidisciplinary diagnostic systems continue to emerge.

Recently, significant differences in diagnostic sensitivity and specificity were revealed after comparing the 2005 Canadian diagnostic guidelines and the Diagnostic and Statistical Manual of Mental Disorders, 5th edition diagnosis Neurobehavioural disorder
associated with prenatal alcohol exposure (ND-PAE).

Although considerable overlap was identified between both sets of criteria, the neurobehavioural domains assessed for a ND-PAE diagnosis limited the identification of patients with FASD.

Similarly, two recent publications that describe revised diagnostic approaches for outcomes resulting from prenatal alcohol exposure are now available: the revised Canadian guidelines and an updated IOM approach.

The Canadian publication documents a national process, which included representation from multidisciplinary experts in the field, while the other was developed by a group of leading specialists and researchers from the United States.

Though the two publications share some commonalities, several significant differences are noted and described further in this issue paper. Both publications arose in response to emergent data in the field that supported improvements and changes to the diagnostic
process. Although, both approaches continue to underscore the need for a multidisciplinary team approach, comprised of individuals with specific expertise and experience in the field of FASD, three specific differences were apparent:

1) the craniofacial criteria;

2) the clinical cut-off for neuropsychological impairment; and

3) the diagnostic nomenclature.

Just click to read the full issue paper written by Courtney R. Green, PhD: Two-Approaches-to-FASD-diagnosis

New survey on addiction in Canada reveals effective paths to recovery

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A new national survey on recovery from drug and alcohol addiction shows promising results for those who manage to overcome the multiple hurdles in accessing treatment.

A panel of Canadian addiction experts met Tuesday in Vancouver to present key findings from the survey, titled Life in Recovery from Addiction in Canada.

Conducted last spring by the Canadian Centre on Substance Use and Addiction, along with the National Recovery Advisory Committee, the survey had 855 Canadian men and women respond to an online questionnaire describing their recovery experiences. Just under half of the respondents lived in B.C.

The panelists said Tuesday that they were surprised to learn that while close to 83 per cent of respondents said they faced barriers initiating recovery, 54 per cent experienced no barriers in sustaining it and 51 per cent didn’t have a single relapse.

Among the biggest barriers, respondents cited the belief that they weren’t ready or their problem wasn’t serious (55 per cent), worry about what people would think of them (50 per cent), not knowing where to turn for help (36 per cent), a lack of supportive networks (30 per cent) and long delays for treatment (25 per cent).

 About 47 per cent experienced barriers specific to accessing treatment, with most related to the cost, diversity and quality of programs, as well as delays and a lack of mental-health and emotional support. Marshall Smith, senior adviser for recovery initiatives at the B.C. Centre on Substance Use, said the 79-page document proves that long-term, sustainable recovery is attainable.
However, he believes Canadians must acknowledge stigmas’ role in forming those barriers — it affected 49 per cent of respondents while they were in active addiction — and how addiction is impacting a broad range of people, including substance-users living in suburban homes and holding jobs.
“Individuals with substance-use disorders are capable of changing, growing and becoming positively connected to the broader community,” he said.

“Yet the recovery community itself faces institutional discrimination, exclusion, social stigma, and experience being reduced to a diagnosis, stereotype and risk score.”

Smith said the survey should be used by policy-makers across Canada to spur further research and to form evidence-based, community-health responses that draw more people into recovery.

According to the survey, the vast majority of respondents reported positive life satisfaction in their recovery, with 91 per cent having a “good,” “very good” or “excellent” life.

Most respondents — 92 per cent — said they turned to a 12-step, mutual-support group program for support. About 61 per cent used a residential addiction-treatment program, while 57 per cent used counselling from a psychologist or psychiatrist not specializing in addiction, and 57 per cent used counselling from an addiction professional.

Judy D’Arcy, MLA for New Westminster and former B.C. NDP health critic, said she believes the report highlights the importance of community support.

D’Arcy stressed that on-demand treatment and recovery services need to become a priority for government, so that if a substance-user is ready to quit, they can do so immediately.

“The services and programs we have in our community — the people who have access to them — do very, very well,” she said. “We’re very proud of those programs, but we also know that there are so many people who don’t have access to them.”

D’Arcy said she hopes that by the fall B.C. will have a dedicated ministry of mental health and addictions, which both the B.C. NDP and Green party pledged to create during the recent election.

Written by: NICK EAGLAND, VANCOUVER SUN

neagland@postmedia.com

twitter.com/nickeagland

Retrieved from: http://www.calgaryherald.com/health/survey+addiction+canada+reveals+effective+paths+recovery/13445848/story.html

The steps that can help adults heal from childhood trauma

traumaPrevention is the mantra of modern medicine and public health. Benjamin Franklin said it himself: “An ounce of prevention is worth a pound of cure.”

Unfortunately, childhood adversities such as abuse and neglect cannot be prevented by vaccinations. As we now know, a large proportion of adults go through adverse childhood experiences (ACEs) and can exhibit symptoms such as substance abuse. The symptoms seen in adults can in turn expose the next generation to adverse outcomes – creating a cycle that’s hard to break.

However, we can limit the impact of ACEs on future generations by taking a close look at what we are doing today – not only for our children, but for ourselves, as adults. Therefore, to prevent adversities for children, we must address the healing and recovery of trauma in adults.

Shifting the paradigm

The ACE Study, launched in the 1990s, offered a groundbreaking look at how childhood trauma can impact health decades later.

More than two-thirds of the 17,000-plus adults in our study reported at least one ACE, such as divorce, neglect or domestic violence in the household. These adults were at a greater risk for numerous negative health and behavioral outcomes.

When I present this research, I often get questions about the adult survivors. What has helped these adults survive to tell their childhood histories?

The ACE Study was not conceptualized to examine resilience. But I had always been curious about what helped these trauma survivors thrive. I wanted to understand not only what led to their ill health later in life, but what led some of them to report positive health, despite their backgrounds.

Promoting good health

Modern medicine and public health have traditionally focused on figuring out the origins of disease and how to prevent poor health.

In 1996, medical sociologist and anthropologist Aaron Antonovsky offered a different perspective. He suggested we look at health as a continuum and focus on what can promote good health. This approach, called salutogenesis, suggests that we as humans have the innate capacity to move toward health in the face of hardship.

Today, the World Health Organization defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” I wondered how this approach might reflect on the adult survivors. What promotes their good health and positive well-being, knowing they are at risk for negative health conditions?

In 2013, my colleagues and I published a study examining approximately 5,000 adults from the original ACE study who reported at least one childhood adversity. We focused on strategies that have been proven to promote good health – such as exercise, abstaining from smoking, access to emotional support and completing education at the high school level or higher.

Indeed, each of the factors listed was associated with reports of excellent, very good or good health among adult survivors. Depending on the factor, there was a 30 to 80 percent increased likelhood that the adult would report positive well-being. Survivors who had a college education were 2.1 times more likely to report positive well-being than those with no high school diploma. These findings were after considering their chronic conditions. We also found that the four factors were associated with a lower likelihood to report depressive feelings.

When I repeated this study with a sample population of adult trauma survivors from four states and the District of Columbia, I found nearly identical results.

What’s more, the greater number of health-promoting activities a person participated in, the better their well-being seemed to be. Adult survivors with at least two factors were 1.5 times more likely to report good to excellent health. Those who reported all four factors were 4.3 times more likely to report good to excellent health, compared to those who engaged in none or one, even after considering their chronic conditions.

On average, trauma survivors who reported at least two of the health promoting factors had also experienced fewer mentally and physically unhealthy days in the past 30 days.

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We have also learned that adult trauma survivors use complementary strategies such as yoga, massage, and dance therapy.

With that said, we need more rigorous studies to test these and other approaches that promote health and well-being. The studies presented examined only four factors and cannot be generalized to all adult survivors of ACEs.

How to start healing

From a survival perspective, the body can respond to perceived or actual threats with the “fight or flight” stress response. However, if this threat is constant, the endocrine and neuronal systems stay activated, which can overtax us and prevent the body from establishing homeostasis. Researchhas helped us to understand how disease can result from stress and trauma.

Just as we are biologically equipped with mechanisms to deal with threatening situations, our bodies are also equipped with neurochemicals like dopamine and GABA that provide feelings of security, happiness and motivation. We can ourselves activate these positive feelings through self-care. For example, in one study, massage was found to reduce cortisol and increase dopamine and serotonin.

There is no voodoo here. If we present our body and five senses with positive inputs – like calming music, unprocessed foods and walks through nature – we can stimulate our own system to regulate in a favorable way.

But these interventions may not be sufficient by themselves. Active counseling, the use of cognitive-behavioral therapy and in some cases medications or other health interventions may be needed.

We must recognize the strength and limitations of modern medicine and public health when it comes to addressing and preventing ACEs. Interrupting the cycle of abuse and neglect must first begin with adults. It will require an integrative and multigenerational approach that empowers individuals to heal their bodies, minds and spirits.

Retrieved from http://theconversation.com/the-steps-that-can-help-adults-heal-from-childhood-trauma-77152 

The AP Learns to Talk About Addiction. Will Other Media Follow?

266524_9d4d244cd88045faa08c8e214afb8b18-mv2_d_4000_2656_s_4_2FOR YEARS, people with addiction have wondered when the media would recognize our condition as a medical problem, not a moral one — when they would stop reducing us to mere “addicts” and speak of us in the more respectful and accurate “person first” language that has become common for people with other diseases and disorders.

Last week, The Associated Press took an important step in that direction. The new edition of its widely used AP Stylebook declares that “addict” should no longer be used as a noun. “Instead,” it says, “choose phrasing like he was addictedpeople with heroin addiction or he used drugs.” In short, separate the person from the disease.

The style guide clarifies other important language to maximize precision and reduce bias in addiction coverage. There are new entries on “alcoholic,” and an array of substances, from bath salts and cocaine to PCP and synthetic cannabis.

Unlike many matters of style, these changes aren’t mere semantics or political correctness. Widespread media misunderstanding of the fundamental nature of addiction has led to some deadly misconceptions about how it should be managed. The AP provides news to around 15,000 media organizations and businesses, and its stylebook is highly influential in setting standards for usage. If its more accurate terms are adopted and understood by institutions like The New York Times and CBS News, it could genuinely help improve drug treatment and policy amid an overdose crisis that shows no signs of slowing.

“Around the beginning of the year, in January, we noticed that there was a hole in our guidance on addiction,” says Jeff McMillan, an AP enterprise editor who was the lead author of the new section. He adds, “As we began talking to experts, we learned that the language that was traditionally used is changing, and we thought it would be good to give people a vocabulary.”

The new language is being widely welcomed. “It’s very good — really well done,” says John Kelly, an associate professor of psychiatry at Harvard and founder and director of the Recovery Research Institute at the Massachusetts General Hospital. Kelly was the lead author of a study published in 2010 that showed that even doctoral-level professionals take a more punitive stance when patients are described as “substance abusers” rather than “people with substance use disorder.”

The stylebook directs its users to “avoid words like abuse or problem in favor of the word use with an appropriate modifier such as risky, unhealthy, excessive, or heavy. Misuse is also acceptable.” Notably, it adds that not all risky use involves addiction — a distinction that has been clear to epidemiologists for decades, but has not often been noted by the press.

And perhaps most important, the new style specifies that journalists should not use “dependence” as a synonym for addiction. In fact, “substance dependence” was dropped as the official diagnosis for addiction by psychiatry’s diagnostic manual, the DSM, in 2013, in part because it erroneously implied that the two are the same.

While the AP doesn’t spell this out, journalists and readers should understand why it matters. In essence, “dependence” means relying on a substance to function normally. People who take certain medications for blood pressure, depression, and addiction will suffer withdrawal if these medications are stopped abruptly, but that does not mean they’re addicted. This is true even for those taking opioids like methadone or buprenorphine to treat addiction. When people are stabilized on an appropriate individualized dose of either addiction treatment medication, they are not impaired at all because of the precise way this specific class of drugs affects the brain and causes tolerance.

By contrast, addiction is a medical disorder marked by compulsive drug use despite bad consequences like impairment. So while addiction is always a problem, dependence may not be. Understanding this is critical for good pain care. Patients taking opioids over a long period of time are often physically dependent, but unless they experience negative consequences and compulsive use, they are not addicted.

Similarly, babies exposed to opioids in the womb may suffer withdrawal symptoms from dependence after they are born, but they aren’t addicted either. Addiction requires persistent compulsive drug use, and such babies don’t even know that what they need is opioids, let alone have the ability to obtain and use drugs to support an addiction.

Yet the media has often failed to recognize these differences. Headlines about “addicted babies” abound and this stigma can itself do great harm. During the crack years, exposed children were subject to abuse and neglect by caregivers and others who misinterpreted normal behavior as malicious.

Recently, The Washington Post surveyed chronic pain patients on opioid therapy, asking them whether they were “addicted or dependent” but without defining those terms. Not surprisingly, one-third of the patients answered yes. While that made for a scary headline, it didn’t tell readers how many actually had substance-use disorders. And that is what you really want to know: Stopping effective pain treatment when you mistake it for addiction can be deadly.

At The New York Times, there are no plans to update the paper’s style manual along The AP’s lines. “I definitely understand the arguments and the sensitivity,” Philip B. Corbett, the paper’s associate managing editor for standards, wrote in an email, adding that “language evolves, and we will continue to think about these terms and consider changes as they seem warranted.” But about dependence and addiction, he said he thought  “very few readers would immediately understand or pick up on the distinction.”

Yet an unhappy result of conflating addiction and dependence is to undermine the only treatment we know that cuts mortality from opioid addiction by 50 percent or more: long-term treatment with methadone or buprenorphine. Too often, these treatments are mischaracterized as merely replacing one addiction with another. If the AP’s guidance can help members and their readers stop making this error, it could end up saving many lives.


 

OF COURSE, how the news media talk about addiction is only one aspect of a deep-seated cultural problem. In 12-step groups, which are used in at least 80 percent of American addiction care, people are encouraged to identify themselves as “addicts” or “alcoholics.” They often use what the AP’s McMillan calls this “almost self-punitive language” when speaking to the press, even if they don’t publicly identify themselves as group members.

This could be seen as a way of trying reclaim stigmatized terms by an oppressed group, just as other marginalized people have sometimes done with slurs against them. The AP suggests similar guidelines for using “addict” as a noun. It’s all right when used in a quote or in the name of an organization, but not otherwise.

Language is complicated and often slow to change — and for a group that has been criminalized, fighting stigma and misinformation is a constant struggle. But when the media start treating people with addiction with the same respect that they use for other patients, perhaps the rest of America will start to accept that addiction is a medical problem and that moralizing and punishment have failed.


By Maia Szalavitz: author of the best-selling “Unbroken Brain: A Revolutionary New Way of Understanding Addiction,” which was just released in paperback.

Retrieved from: https://undark.org/article/associated-press-stylebook-addiction/

A practical guide to pregnancy and being a parent: Having Mixed Emotions

wh_ts80379412Pregnancy is a time of change, both physically and emotionally. Whether or not this has been a planned pregnancy, you might be having mixed feelings.

Many parents have times of great joy, anticipation and excitement about meeting their baby, but many can also feel sad and worried. There are several possible causes for these changing emotions: tiredness, changes in hormones, worries about pregnancy and birth, and other kinds of stress. Some of these feelings can be caused by the normal physical and hormonal changes that take place during pregnancy. Others are caused by changes to your life and relationships that come with pregnancy and becoming a parent.

When you’re stressed, your baby’s environment is stressed too. Learning ways to cope with stress in pregnancy will help you now, and will also build coping skills for the normal, every day stresses of parenting.

To cope with stress and changing emotions you can:

  • get enough rest and sleep
  • eat well
  • stay active
  • keep your life simple
  • talk about your feelings with someone who understands (e.g., your partner, family or friends)
  • ask for and accept help from others
  • try to do one special thing for yourself each day
  • learn more about stress and pregnancy
  • start reading about the early years to get ready for parenting

It’s normal to be a little worried or feel sad while you’re pregnant. However, if these feelings are strong and don’t go away, or if you find yourself crying a lot and feeling very anxious, talk to your health care provider.

It may help if you are in contact with other people who are expecting. No one understands pregnancy like other parents-to-be. Childbirth education classes, prenatal exercise courses and similar social activities are good places to meet other expectant parents—you can build on that support with parenting programs after your baby is born.

It will help if you can be patient with yourself and others. Keep your expectations realistic. Try to maintain good and open communication with your partner.

Remember, the best way to take care of your baby is to take care of yourselves.

  • Make time for you

    Make time for yourself every day, even if it’s just a few minutes. You can start by writing a list of the things that help you relax—maybe a short walk with a friend, a bath, an afternoon nap or reading a book. You might want to try meditating, listening to music or going to a relaxation class.

Retrieved from: http://www.healthyparentshealthychildren.ca/starting-off-healthy/taking-care-of-yourselves/having-mixed-emotions/

‘I knew I needed to change my life’: Drug court graduate credits program with second chance

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A 21-year-old woman who was heavily pregnant when she was arrested on drug charges credits a rehabilitative program with giving her a second chance.

“As soon as I found out I was having a baby … I knew I needed to change my life,” Julia Carriere told a full courtroom Wednesday, speaking about her one-year-old son Richard. “He is my biggest inspiration.”

Carriere is the latest graduate of the Edmonton Drug Treatment Court Service, a program that delays sentencing after an offender pleads guilty to a criminal offence related to drug addiction. For at least a year, participants attend court weekly, access services and undergo regular drug testing.

Carriere entered the program in March 2016 when she was seven-months pregnant. She had been selling drugs in the community and believed she was a functioning addict, she said.

Dave Hill, assistant chief Crown prosecutor, explained that by successfully completing drug court, Carriere avoided “a significant period of custody.”

“You are amazing. Thank you for all your hard work in the program,” he told her. Carriere was sentenced to one day, served Wednesday in court.

Hill read out a lengthy list of her accomplishments, including a slew of courses on parenting, mental and physical health, relationships as well as financial literacy. She completed 117 clean drug tests, attended 266 meetings and volunteered for 51 hours in the community, he added.

However, drug court isn’t able to operate at its full capacity, said program manager Grace Froese.

Our funding was reduced by about 50 per cent almost two years ago,” she said, explaining the current budget is about $367,000, including federal, provincial and private funding sources. “We had to lay staff off and downsize the program.”

Now enrolment is limited to 20 offenders at a time, down from more than 30.

“We are offering a long-term solution,” Froese said, pointing to Carriere as an example of the program’s success — she had been in and out of the justice system as a teenager.

“This is a girl who had become an experienced criminal,” Froese said. “She is now going to NAIT, raising her son and building her life.”

Carriere even took up new hobbies, learning piano and dedicating herself to Latin dancing.

Froese told Wednesday’s courtroom that she is immensely proud and reminded Carriere about what she said when she applied to join the program: “I need this chance and I’m not going to blow it … I don’t want to miss my kid’s first steps and first words.”

With her parents visibly emotional in court, holding their fidgeting grandson, Carriere told them she is grateful.

“You never gave up on me,” she said, crying. “I couldn’t have done this without you guys, I love you so much.”

Clare ClancyCLARE CLANCY

Retrieved from: http://edmontonjournal.com/news/local-news/i-knew-i-needed-to-change-my-life-drug-court-graduate-credits-program-with-second-chance

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