Monthly Archives: December 2017

“No Duty More Important”: Why We Must Treat Children’s Rights as Fundamental Human Rights

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By Julia Mancini (Intern, APA Office on Children, Youth and Families)

“There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that their rights are respected, that their welfare is protected, that their lives are free from fear and want and that they can grow up in peace.” — Kofi Annan

 

Where exactly do human rights begin? Sunday, December 10th, 2017 is International Human Rights Day. #HumanRightsDay is celebrated in conjunction with the anniversary of the day the United Nations General Assembly adopted the Universal Declaration of Human Rights, which will reach its 70th anniversary this coming year. The Declaration seeks to uplift individuals from all walks of life across the world and protect our kinship and dignity as human beings. However, how far does this kinship and dignity extend?

 

We cannot protect the rights of all people if we do not respect the rights of the youngest and most vulnerable. In November of 1989, the United Nations General Assembly adopted the Convention on the Rights of the Child (CRC). It acknowledges young people as change agents of society and holders of rights1.

 

Some might consider children bystanders in their own lives, directed always by the decisions caregivers and governments make for them. In considering children active agents of society, we respect their dignity and give them a voice to speak on the difficult situations they face so that we might better support them.

 

Adults often have legal, developmental, social, and monetary advantage over children. It is not mistaken that adults support children in ways they are not able to do for themselves. The goal is not to take away caregivers’ rights but to instead retain the balance between the rights of children and the rights of families3.

 

What exactly do those rights include? According to the UN, all children have a right to:

  • a safe physical environment,
  • security,
  • food,
  • shelter,
  • freedom of expression,
  • freedom of association,
  • self-determination,
  • knowledge, and
  • work.

 

On International Human Rights Day, let’s remember that children’s rights are human rights. If we assume the capacity of a child, we often underestimate the contribution they offer to our society and submit their autonomy to a third party or adult with more power. It is important to balance this agency with protection from harm for those who cannot protect themselves2. This pertains especially to the most vulnerable children throughout the world – the ones who often face the most adversity and discrimination, namely disabled, displaced, impoverished, and minority children. It is important that when we speak of the rights of marginalized groups throughout the world, we also give a voice to children within these groups who might be forgotten or exploited.

 

The American Psychological Association has endorsed the principles and spirit of the CRC and thus recognized the importance of the rights of children. This issue is important because, as a society, if we were more aware of what children are entitled to as citizens of the world, there would be opportunity for social justice changes that could have an inter-generational and global impact.

 

It is, of course, essential that adults take a primary role in ensuring their children’s well-being, but it is our international responsibility to ensure that governments and caregivers are doing this in a way that fits the child’s best interests. If we understand and advocate for children’s rights in the present, there will be a better future for not only these individuals, but on an international level as well.

 

Join the conversation on social media:

  • Celebrate children’s rights and International Human Rights Day by telling the world that “children’s right are human rights” on your social media. Use the hashtags #HumanRightsDay and #childdevelopment.
  • Take part in our December 12 Twitter chat on the vital role scientists can play in promoting human rights. It will take place at 2 PM (ET) in partnership with the American Chemical Society and the American Association for the Advancement of Science (AAAS) Science and Human Rights Coalition.

 

References:

1Ruck, M. D., Keating, D. P., Saewyc, E. M., Earls, F. & Ben-Arieh, A. (2014). The United Nations Convention on the Rights of the Child: Its relevance for adolescents. Journal of Research on Adolescence, 26(1) 16-29. doi:10.1111/jora.12172

2Smith, A. B. (2016). Achieving social justice for children : How can children’s rights thinking make a difference? American Journal of Orthopsychiatry, 86(5), 500-507. doi:10.1037/ort0000191

3Huus, K., Dada, S., Bornman, J., Lynegard, F. (2016). The awareness of primary caregivers in South Africa of the human rights of their children with intellectual disabilities. Childcare, Health, and Development, 42(6) 863-870. doi:10.1111/cch.12358

 

Biography:

Julia Mancini is currently a junior Psychology and Criminal Justice double major at George Washington University. Julia has a particular interest in children and families and is excited to be interning with the Children, Youth and Families office this fall. Julia has been involved with behavioral genetic research through The Boston University Twin Project. She also worked as a Clinical Research Intern at Safe Shores, DC’s Children’s Advocacy Center, investigating disparities in PTSD presentations among minority youth. This past summer Julia interned for the Child Protection Unit in the District Attorney’s office in her home state of Massachusetts. She also had the opportunity to work internationally with a non-profit in Cochabamba, Bolivia that provides psychological, legal, and social services to child survivors of sexual violence.

Image source: Photo by Michael Mims on Unsplash


Filed under: Children and Youth, Human Rights and Social Justice Tagged: children's rights, human rights, International Human Rights Day, UN Convention on the Rights of the Child

A Good Death is an Important Part of a Good Life

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This is the first of three blog posts on grappling with end-of-life issues. Posts will go up for the next three Fridays. Subscribe to our Psychology Benefits Society blog to stay updated.

By Amy Albright (Clinical Geropsychology Doctoral Student, University of Alabama)

We spend a lot of time talking about quality of life, but, increasingly, people around the world are talking about quality of death. Facing the end of life is hard for everyone involved, and many worry about the pain and loss of dignity associated with dying.1 In some areas of the world, individuals may choose legalized medical aid in dying, allowing them to control the time and place of their own death. This assistance allows patients to peacefully and painlessly end their lives through prescribed medication, which is often referred to as “assisted dying” or “death with dignity.” The majority of patients who choose these options are receiving hospice care,2 and many choose to die peacefully at home.3

Within the United States, residents of California, Colorado, Montana, Oregon, Vermont, Washington, and Washington D.C. may seek assisted dying.4 Currently, all U.S. states that allow assisted dying require that the patient is at least 18 years old, has a terminal illness, and has the legal capacity to make medical decisions.5 Psychologists don’t take a stand on this issue one way or the other; instead, they work with individuals to identify their own values and make their own decisions during this difficult time.6 There is a great deal of controversy surrounding  assisted dying, as the idea of ending one’s own life may be uncomfortable within certain cultures and religions.7 This is a choice that must be made at an individual level, and many who explore this option do not choose to hasten their own death. As of 2015, approximately 64% of medications prescribed under Oregon’s Death with Dignity Act were used.3

There is a great deal of variation in assisted dying laws,5 which may be due to how these laws develop. Brittany Maynard, a resident of California, was 29 when she was diagnosed with terminal cancer.8 While she wanted to choose death with dignity, this was not an option in California at the time, and she and her husband moved to Oregon so she could choose a peaceful death on her own terms. Ms. Maynard and her family advocated for California to pass a death with dignity law, and the California End of Life Option Act took effect in June of 2016.9 Due in large part to Ms. Maynard’s efforts, the idea of choosing assisted dying at the end of life is something that many Americans are now aware of. While hastening death is not something that most people will choose, having these tough conversations helps patients and their families become more aware of the services and options available to them at the end of life, allowing them to make the best decision possible.10

Choosing to pursue assisted dying is an incredibly difficult decision for all involved, and judging quality of death is very personal.11 While losing a loved one is never easy, family members of those who seek assisted dying have noted that their relative appeared prepared for death, allowing goodbyes to be said.1 Death is an inevitable part of life, and death with assisted dying  laws allow patients and their families some measure of control over the time and manner of death. Simply having the option to influence quality of death may be enough for some patients, and not all who consider assisted dying laws will choose to hasten death. Ultimately, there are no universal standards about the decision to pursue assisted dying, and this should always remain a matter of personal choice.6

 

References

  1. Smith, K. A., Goy, E. R., Harvath, T. A., & Ganzini, L. (2011). Quality of death and dying in patients who request physician-assisted death. Journal of Palliative Medicine, 14(4), 445-450.
  2. Campbell, C. S., & Black, M. A. (2014). Dignity, death, and dilemmas: A study of Washington hospices and physician-assisted death. Journal of Pain and Symptom Management, 47(1), 137-153.
  3. Oregon Public Health Division. (2016). Oregon Death with Dignity Act: 2015 Data Summary. Retrieved from http://www.worldrtd.net/sites/default/files/newsfiles/Oregon%20report%202015.pdf.
  4.  Death with Dignity National Center. (2017). Death with Dignity Legislation. Retrieved from https://www.deathwithdignity.org/faqs/#laws.
  5. Emanuel, E. J., Onwuteaka-Philipsen, B. D., Urwin, J. W., & Cohen, J. (2016). Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA, 316(1), 79-90.
  6. American Psychological Association. (2017). Resolution on Assisted Dying and Justification. Retrieved from http://www.apa.org/about/policy/assisted-dying-resolution.aspx.
  7. Hendry, M., Pasterfield, D., Lewis, R., Carter, B., Hodgson, D., & Wilkinson, C. (2013). Why do we want the right to die? A systematic review of the international literature on the views of patients, carers, and the public on assisted dying. Palliative Medicine, 27(1), 13-26.
  8. Maynard, B. (2014, November 2). My right to death with dignity at 29. CNN. Retrieved from http://www.cnn.com/2014/10/07/opinion/maynard-assisted-suicide-cancer-dignity/index.html.
  9. Coalition for Compassionate Care in California. (2017). End of Life Option Act. Retrieved from http://coalitionccc.org/tools-resources/end-of-life-option-act/.
  10. Balaban, R. B (2000). A physician’s guide to talking about end-of-life care. Journal of General Internal Medicine, 15(3), 195-200.
  11. Meier, E. A., Gallegos, J. V., Thomas, L. P., Depp, C. A., Irwin, S. A., & Jeste, D. V. (2016). Defining a good death (successful dying): Literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry, 24(4), 261-271.

 

Biography:

Amy Albright is a doctoral student in the Clinical Geropsychology program at the University of Alabama. Her research focuses on health literacy and the end of life, and she has a particular interest in factors that influence seeking medical assistance in dying. This includes both patient and provider attitudes towards physician-assisted death, as well as health and palliative care literacy.


Filed under: Aging Tagged: aging, assisted dying, death with dignity, end of life, hospice care, palliative care

What Does Our Past Tell Us About Our Future? The Essential Role of Psychologists in Fighting HIV

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(L-R) Dr. Rich Wolitski (HHS/OHAIDP); Dr. Fayth Parks (Georgia Southern University) APA Ad Hoc Committee on Psychology & AIDS (COPA) chair and symposium co-chair; Dr. Sherry Wang (Santa Clara University) COPA symposium co-chair; Ms. Cherie Mitchell (APA); Dr. Karen Ingersoll (University of Virginia); Dr. Richard Jenkins (NIH/NIDA); and Dr. Ramani Durvasula (California State University, Los Angeles)

This article is cross-posted from the HIV.gov blog with their permission.

 

By Richard Wolitski, PhD (Director, Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human Services)

 

Since the early days of the HIV/AIDS epidemic, psychologists have been essential in the response to HIV:

  • They offered mental health support for people living with, or at risk for, HIV—as well as for their families and communities, and those who provide HIV medical care and social services.
  • Psychologists developed programs to educate people about HIV and motivate behavior change to reduce risk.
  • They counseled and supported those who were diagnosed, and also played important roles in working to eliminate the stigma that attaches to HIV/AIDS, sexual minority status, gender identity, substance use, and other characteristics associated with HIV infection.
  • They conducted research that gave us an understanding of cognitive, behavioral, and social determinants of health that create health disparities.

 

They continue to do all of these things, and they play a vital role as the response to HIV/AIDS continues to evolve.

This year, the professional organization for psychologists, the American Psychological Association (APA), celebrated its 125th anniversary. The APA has been deeply involved in the response to HIV/AIDS in the United States:

  • From 1996-2014, the Centers for Disease Control and Prevention (CDC) funded APA’s Behavioral and Social Science Volunteer (BSSV) Program. The program established a national network of more than 300 psychologists, sociologists, anthropologists, and public health experts who provided capacity-building technical assistance to improve the delivery and effectiveness of HIV prevention services to more than 700 organizations.
  • And from 1991-2014, the Substance Abuse and Mental Health Services Administration (SAMHSA) funded APA’s HIV Office for Psychology Education (HOPE) Program, which trained more than 36,500 psychologists and allied mental health providers about HIV, substance use, and mental health.

 

Today, the organization continues its mission to address the ongoing toll of HIV on the mental and physical health of people living with HIV. You can view information about activities, events, and resources on the APA’s HIV webpage.

 

Dr. Arthur C. Evans, Jr. , PhD, APA’s Chief Executive Officer, expressed his support for APA’s role in this work. He shared with me that he sees psychology’s role in this way:  

Psychology plays a critical role in HIV prevention and treatment by promoting behaviors aimed at helping to improve overall health, mental health and well-being and providing a better understanding of social and cultural factors, such as stigma and culturally appropriate counseling and treatment interventions. We know that access to quality behavioral health services facilitate better outcomes across the HIV care continuum, including viral suppression.

Dr. Arthur C. Evans, Jr., PhD

 

Given the organization’s commitment and long track record of service to the HIV community, I was honored when APA asked me to be a discussant as part of the 125th Anniversary Talk, Past, Present and Future of HIV/AIDS Science and Practice in Psychology. Under the skillful direction of co-chairs Dr. Fayth Parks and Dr. Sherry Wang, the panelists addressed a number of important topics:

  • Eugene Farber, PhD, ABPP, Emory University School of Medicine, The Future of Psychology as a Health Service Discipline: Clinical Lessons from the HIV Epidemic
  • Ramani Durvasula, PhD, California State University, Los Angeles: A History of HIV/AIDS in Women: Shifting Narrative and a Structural Call to Arms
  • Karen Ingersoll, PhD, Professor of Psychiatry and Neurobehavioral Sciences at the Center for Behavioral Health & Technology, University of Virginia: Internet Intervention for HIV+ Substance Users to Improve ART Adherence and Addictive Behaviors
  • Richard Jenkins, PhD, Health Scientist Administrator, Prevention Research Branch, National Institute on Drug Abuse: Roles for Psychologists in a World of Changing Epidemics and Policies

Each of the presentations drew attention to the ways that psychologists have contributed to the fight against HIV. A key point made by all the participants is that behavioral approaches to HIV prevention, care, and treatment optimize biomedical approaches—and that the two are inextricably linked.

Dr. Eugene Barber speaking
Dr. Eugene Farber, Emory University

Dr. Gene Farber set the frame for the session by reflecting on the essential role of behavioral health service providers in supporting a humanistic, culturally responsive, and patient-centered care experience for people living with HIV. He stressed that behavioral health services must encompass not only assessment and treatment of behavioral disorders but also interventions to prevent the onset of other health conditions and to optimize biopsychosocial well-being. He also noted that psychologists can make substantial contributions to patient care and evaluation in medical settings.

Dr. Karen Ingersoll took his points a step further to show how psychologists can help individuals even when in-person contact is impossible. She is working on finding better ways to support substance users who are living with HIV—particularly those in rural areas, where HIV and other types of care are not always available and may require time away from work. These individuals are at significantly higher risk for nonadherence to their HIV medications and disengaging from care—so Dr. Ingersoll and her colleagues have developed an interactive online video intervention  that features peer role models offering advice and support to viewers. (Much like our own Positive Spin series, which takes a similar approach to supporting people living with HIV to achieve viral suppression.) This behavioral intervention is currently being tested to see if it can support substance users to take full advantage of biomedical treatment for their HIV disease.

Dr. Ramani Durvasula spoke about the need for holistic approaches to psychological care for women living with HIV. Her presentation focused on “the story of HIV in women,” which includes the multiple challenges women have faced in attempting to:

  • Get information on HIV risk;
  • Obtain an HIV diagnosis, care and treatment; and
  • Participate in HIV clinical trials.

For many women, neither biomedical or behavioral interventions were available.

Dr. Durvasula then discussed the current need for psychologists to be aware of the multiple psychosocial stressors women with HIV face (e.g., economic and caregiving burdens, relational issues, stigma, intersectional discrimination) and how they affect women’s physical health. She also emphasized the need to focus on women’s resiliencies, strengths, and growth rather than just their HIV disease. She ended with the observation that, for the future, psychology training programs should be looking at social justice and advocacy training as key to producing psychologists with the skill sets necessary for the future.

Finally, Dr. Richard Jenkins took the audience through a history of the role of psychologists in the U.S. epidemic, including a look at the ways in which the advent of antiretroviral therapy (ART) and other biomedical approaches have pushed many behavioral interventions to the margins. However, he noted that many of issues that affected people living with HIV in the early days of the epidemic persist and have not been eliminated by effective biomedical treatment, including stigma, access to care, and racial/ethnic disparities. He ended his presentation with a series of questions about how to connect psychologists to opportunities in HIV work, and raise the value of psychology for workforce development related to HIV.

As I listened to these passionate, committed professionals, I thought about the long history of the HIV/AIDS epidemic in the United States. I thought about how our early efforts, which were based on the best information we had at the time, created systems and approaches that have sometimes hampered our efforts to respond to the realities of today’s epidemic.

For example, when the first HIV test became available, we created a standalone system for HIV testing that was supported with siloed funding (meaning the funds could only be used for HIV testing—not any follow-up care or treatment). This was necessary because of the large number of people who needed to be tested and the fact that many people were unwilling to be tested by their usual healthcare providers. They didn’t want their providers to know they were at risk for infection or did not want information about their risk and their HIV test results to be recorded.

So, we set up stand-alone systems for anonymous testing—meaning your name was never attached to your HIV test. You were given a number that matched the one on the vial of blood the worker at the testing site took from you, and you had to have that number to get your results. This approach was intended to alleviate the stigma of testing—but it also meant that we were not able to set up linkages to care and treatment for newly diagnosed people.

The lack of connection with health care was further reinforced—first, by the absence of effective treatment, and, then, for almost three decades, by guidelines indicating that ART was not needed until later in the course of the infection, when damage to the immune system became clear. This history—and the fact that funding streams were established for HIV testing separately from health care—have required substantial changes to facilitate immediate linkage to care, and establishing late in the epidemic coordinated prevention, care, and treatment plans.

Another way that our past response affects our future is in the way that surveillance systems were established. Initially we were focused on AIDS. We did not know what caused it, and we focused on documenting the cases when and where they were identified and when and where the person died. We did not need to gather data to support engagement in HIV care over a lifetime. We were focused on keeping people alive for the next year (or month) and preventing new cases. This changed as we learned what caused HIV, its effects on the body and how to treat it effectively. As changes occurred, we had to start playing catch-up on the surveillance front, and we continue to wrestle with how to collect data in ways that will help us end the epidemic.

We know now that being diagnosed and beginning HIV treatment as soon as possible are essential to the health of people living with HIV. We also know that good physical health and good mental health are closely connected, and that people who feel a sense of well-being are also more likely to feel motivated to care for their bodies. That’s particularly important for people living with HIV.

Our goal is to support every person to engage in care, remain on treatment, and achieve viral suppression—and that goal can only be reached if people feel empowered to take charge of their healthcare. That is where the contributions of my colleagues at APA come in.

Even though biomedical tools are clearly the way we will ultimately win this battle against the HIV epidemic, they will not work if people do not engage in the behaviors that are needed to use them effectively. Psychologists have the training and the skills to help them do just that.


Filed under: AIDS, Health Disparities, Human Rights and Social Justice Tagged: aids, AIDS research, behavioral health, discrimination, HIV, hiv prevention, HIV treatment, mental health, stigma