The great neurologist Oliver Sacks, best known for his book Awakenings, has spent his career exploring the landscape of the human mind. Perhaps the most apt description of his life work, his research, is that of "compassionate curiosity." Sacks wanted to understand the nature of his patients' neurological illnesses; and the ways he could help them. He also made his work accessible to the rest of the world, not only to professionals but to the public as well. I heard Dr. Sacks speak at Abyssinian Baptist Church in Harlem on the topic of music and the brain. I have never forgotten that incredible experience.
For those of us who work in the field of childhood bereavement, practitioners, researchers and program administrators, we would do well to adopt Sacks's belief in compassionate curiosity. We must be curious about children's grief, and how we can best help families who are grieving. Like Dr. Sacks, we need to translate what we find to make it accessible and meaningful. Children and families who grieve are in need of as many resources as we can provide. They not only deserve our compassion but our curiosity as well.
While most of us are curious, not everyone wants or is able to conduct research. Some of us are clinicians or volunteers or program administrators, and others are researchers. We cannot be all things but we can bring our multiple talents to the table and collaborate with each other for the greater good. We can share our curiosity with each other.
Why should we ask questions about children's grief?
What can we learn about evaluating their coping?
How can we determine if the programs and interventions we use actually help children and their families?
The answers are right in front of us. In today's atmosphere of ever-exploding knowledge families have access to more information than ever before. They search the Internet, post on social media, listen to the 24-hour news cycle and talk to friends who also search the Internet, post on social media . . . Not surprisingly families and young people have questions about what they are reading and hearing. We owe it to them to address their questions and concerns. Reading the research, talking about studies and offering to participate in the research process are crucial steps for all of us in the childhood bereavement field.
Coming face to face with parents' questions puts us on notice. We need to know what is going on in our field. Here are a few examples of how we might be confronted by concerns voiced by our families.
Defusing Alarming Headlines
It is Monday morning and the phone is ringing off the hook and your inbox is overflowing. You listen to the first message and instantly know that you have your work cut out for you. Anxious parents heard "on the news" that bereaved children are "likely" to have mental health problems later in life.
The lay press attempts to interpret research findings but invariably falls short and can even lead the reader to erroneous conclusions. In 2014 Swedish researchers published a large population based study examining the risk of psychosis associated with severe bereavement stress before birth and after, through adolescence. An Internet column posted the following headline about the study:
"Children who lose close relative at risk of mental illness. Youngest kids, those exposed to suicide most likely to develop illnesses such as schizophrenia."
You can imagine a parent or grandparent reading the headline with dismay and asking a professional if it's true, if the study is accurate. A review of the original study disclosed that there were limitations, specifically that the subjective experience of grief and the length of time of bereavement stress were not measured. While circumstances of death were identified in the study, the age of the deceased was not. The authors stressed that the relationship between death during childhood and later mental illness was an association not causation, and that it was a very slight risk. They also explained that genetic factors contributed to the findings. These points certainly change the impact of the article.
Clarifying the Use and Misuse of Theories
Over the last month a number of articles have been written about Sheryl Sandberg following the sudden death of her husband Dave Goldberg. They are the parents of two young children and Silicon Valley royalty. Sandberg, the author of Lean In, is the COO of Facebook and her husband Dave was CEO of Survey Monkey. A number of authors quoted from Sandberg's moving Facebook posts. In an article titled, "Why Returning to Work While Grieving Can Be the Right Choice," the author describes her own experience of losing her husband and cites the stages of grief by Elizabeth Kubler-Ross. She also notes that four years is a typical time period for accepting a loss, "according to modern day grief counselors". As you can imagine, a bereaved wife would have many questions about the linear progression of stages and the four-year time frame to "accept" a loss. Kubler-Ross' work has been misinterpreted so often, it has become a staple in lay publications on bereavement. As professionals we need to help clarify what families are reading.
The number of articles and Facebook posts following the death of Dave Goldberg was quite astounding. Sandberg's post marking the end of sheloshim, the 30-day period of mourning in the Jewish religion, was written with honesty and eloquence. There were almost a million "likes" and more than 40,000 "shares" and comments. Many of the comments were from friends and strangers admiring her courage but countless others were posts by widows and widowers who had been through similar experiences. An online article titled, "Online Grieving Might Seem Wrong but -- we better get used to it," briefly explored findings from several social media studies. As childhood bereavement professionals, we are beginning to see social media integrated into the mourning practices of our families. We can't simply say that social media is wrong or harmful following a death, we need to identify the benefits and how we can help families use such strategies in the most effective manner. Staying current on the newest findings (and using Google Scholar Alerts) will better prepare us to answer parents' nervous questions about Facebook, Twitter and other forms of social media.
We must continue to think and be curious, with compassion. In his moving essay on life, Dr. Sacks wrote, "Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure."
A thinking animal, yes, we are privileged indeed.
Donna A. Gaffney, RN, DNSc, FAAN
Advisor for Research and Content Development, NAGC
♦ Blogposts by NAGC staff, members and guest writers are solely the opinion of the author. We recognize that there are varying opinions regarding issues related to childhood grief and we encourage respectful responses and discussion. Members may login and comment on this page - all others are encouraged to comment on our facebook page.