Posted By Barry J. Jacobs,
Friday, November 6, 2015
This post is a reprint of a piece from AARP. Click here for the original piece. Reprinted here with permission.
In the spring of 2010, 15 years after my mother and stepfather had moved to a South Florida golf community for the good life, it became apparent that they were bankrupt and struggling. My stepfather had advanced dementia. My mother was hobbled with chronic back and knee pain. After conferring with my wife, we invited them to move into an apartment a mile from our home in Swarthmore, Pa., so that we could provide ongoing help to them for as long as they needed it.
I wasn't totally naive about the challenges of becoming a caregiver. At age 14, I had watched my mother serve as my father's caregiver during the year he was dying from brain cancer. As a clinical psychologist, I had specialized for 20 years in counseling families who were caring for chronically and seriously ill loved ones. I also had written a popular book on caregiving for aging parents. But now it was my time to walk the walk and show that I actually have the expertise I claim for myself.
Five years later, much has happened. My stepfather eventually had to be placed in a dementia unit and later died. My mother became frailer and was diagnosed with dementia herself. I've been to the emergency room with one or the other of them a dozen times for falls and changes of mental status, bleeding and suspected strokes.
Like many caregivers, I've experienced the maddening lack of communication and coordination among doctors, therapists, home health aides, pharmacists and nurses, but have also encountered many kind, helping professionals along the way who tried their utmost to provide us with guidance and comfort. Even though I pride myself on being ever-empathic with my patients, I've come up against the limits of my own kindness in my interactions with my family members. In truth, I can be curt and demanding with them at times.
Despite these lapses, I have hung in there with caregiving far longer than I thought I would or could. When I think of other caregivers I've known who've provided care for twice as long as I have with half as much strain or complaint, I can only marvel.
My mind has always been a kind of jukebox, recalling songs with lyrics that have pertinence to what I'm experiencing in the present. In honor of National Family Caregivers Month, here are some classic hits and insights that have occurred to me recently as I've tried to make sense of my caregiving years.
"Tired of Waiting for You" (the Kinks): I like being on the go, vrooming through life at a breakneck pace. But caring for an aging parent has been like abruptly going from fifth gear to second; I've suffered rapid deceleration. Whether during the 45 minutes it takes my mother to eat a meal or the hours necessary to get her out of bed, groomed and dressed in the morning, waiting for her has been a particular torment. I am prone to impatiently trying to speed her up with pressed encouragement. She resists and complains that I'm always rushing her. To prevent us from forever being at odds, I've had to consciously slow myself down, taking deep breaths and paying closer attention to the moments we're together. I'm aware that I have to savor these moments when my mother and I are both calm and reasonably content because there's no guarantee she'll be here tomorrow.
"You Can't Always Get What You Want" (the Rolling Stones): The best-laid plans go awry. As much as I strategize about getting my mother in and out of her doctor's office as quickly as possible, I have no control over the flow of his appointments that day. For all the environmental safeguards I've put in place, I can't prevent my mother from occasionally falling. Effective caregiving, I've learned, is about living the lessons of the Serenity Prayer and flexibly responding on the fly to any and all problems that arise. Mick Jagger was right when he sang that, if you can't get what you want, then "you get what you need" — not the timely, efficient, perfect provision of care, but muddling-along, doing-the-best-we-can-under-the-circumstances, still-loving care.
"Takin' Care of Business" (Bachman-Turner Overdrive): Most caregivers establish rote routines of washing clothes, doling pills and scheduling appointments that efficiently keep them on track each day. This is the workman-like "taking care of business, every day, every way" that Randy Bachman sang about. But when caregiving becomes a matter of checking the boxes on automatic pilot, it raises the risk that ailing loved ones are viewed as simply sources of chores. I've learned that it is easy to fall into robotic caregiving — doggedly and unthinkingly doing what needs to be done — and to thereby lose the emotional connection with my mother. Taking care of business should never trump being present and attuned.
"Running on Empty" (Jackson Browne): I've counseled family caregivers for years about the importance of replenishing themselves through eating and sleeping well, maintaining important relationships and just relaxing at times. Otherwise, depletion and demoralization set in. For me, though, this has certainly been a case of "do as I say, not as I do." It has been too easy for me to justify taking care of one more task for my mother and to forego my own needs. I've come to realize that this stems directly from my sense of guilt: How can I run off to have fun if my mother is stuck in her apartment, sometimes alone and lonely? But a life without any fun makes me a cranky caregiver. When I play basketball or see a movie, nap or read, I put energy back in my tank and then have more to give.
"With a Little Help From My Friends" (the Beatles): I mean the word "friends" in the broadest sense — old chums, new acquaintances and close family members, but also caring neighbors, reliable aides and trusted health care professionals. Caregivers need many helping hands providing many kinds of help. In truth, I'll take any assistance I can get for my mother, from driving her to appointments to picking up groceries for her. About this, I have little guilt because I'm juggling way too much most of the time. I'm delighted whenever I can hand a few balls off. I've also learned that it doesn't work to wait for others to volunteer to help. Even the most well-intentioned friends are wrapped up in their own lives. When I make specific asks to particular people, those true friends usually step up.
"Try a Little Tenderness" (Otis Redding): I often tell caregivers that there is a difference between loving the person you're caring for and loving caregiving. The latter entails many unpleasant tasks, including helping with toileting and abundant laundry and forever going on one more pharmacy run. As a caregiver often encumbered with these kinds of tasks, I can get testy. My mother can, too. It's hard for her to be on the receiving end of care and to feel diminished.
Because we're partners in this together, my mother and I, we need to be good to one another by drawing on the positive feelings that are there in our relationship, including love, appreciation and respect. Or, in the words of the great singer Otis Redding, we need to speak and act with one another with tenderness.
Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford)
Posted By Stephen Mitchell,
Wednesday, October 21, 2015
This piece is a reflection on the third plenary session at the 2015 CFHA Conference in Portland, Oregon. Click here for a summary of the session.
I sit in a tree-canopied park bright with green grass and kissed by the wetness of Portland rain, recalling all that just happened at the 2015 CFHA Conference. A song by the Wailin’ Jennys accompanies me. The lyrics fill my spirit…
“This is the sound of voices two, the sound of me singing with you
Helping each other to make it through, this is the sound of voices two
This is the sound of voices three singing together in harmony
Surrendering to the mystery this is the sound of voices three.”
I came to the park following a plenary presentation a group of my colleagues from St. Mary’s Family Medicine Residency gave at the annual CFHA conference. We each shared personal narratives about dying and death. I recounted the lived experience of my son Bo dying at 14 weeks old. I told this story with some trepidation because the biomedical view of miscarriage does not classify this type of pregnancy loss as a death. I did not know how or if my experience would be acknowledged. My humble question to the audience and really to the biomedical worldview was “Can I call this a death?”
My personal experience of saying these words and the words that followed, as well as my impression of the audience’s subsequent response, is what I am trying to decipher on the park bench with the Wailin’ Jennys. Tears travel down the landscape of my cheeks and I find myself whispering, “I told your story today Bo, I gave you a voice.”
Erin, my wife, presses into my consciousness and I imagine our two voices joined together trying to help one another through the devastation and gut-wrenching pain Bo’s death brought. Bo also steps into my imagination and I feel my head lift to the sky, my eyes gaze into the upper limits of the trees, and I hear Erin’s, Bo’s, and my voice. Our voices three came together in harmony during the plenary and spoke of the mysterious agony that travels with loss.
Yet, we did not just speak of the agony but also the mysterious beauty that is birthed in loss. It is not a beauty that is sought after or even wanted but it is a beauty that unites and binds hearts together in unspeakable ways and an indestructible relationship. This beauty needs a voice. After the plenary many people expressed immense kindness to our whole group and me. Those who had been specifically touched by miscarriage poured forth gratitude that space had been given to this silent and often unrecognized loss.
Miscarriage is not a loss for all who experience it, but it is for many. As I continue to reflect on my experience and the response from the audience, I have come to understand that something powerful took place. I had the honor to bear witness; to give voice to what has been lost. I did this for my wife, my son, and myself but I also did this for those present who had been changed by a miscarriage.
As physicians and psychotherapists we encounter patients who are physically, emotionally, and spiritually in pain. In my work as a therapist, I have come to believe so much of this pain comes from losses that have never been given a voice. Rather, patient’s wrestle to hold their losses within and their bodies, hearts, and spirits suffer as the pain festers. Loss must have a voice or it will rule every facet of who we are.
Giving voice to loss does not lessen it but it does allow us to bear its burden with a community. My personal pain due to Bo’s death did not diminish by speaking at the plenary. In fact my heartbreak seems to have grown but this is not a heartbreak I bear alone. I see the faces of my wife, Bo, my two sons, and the faces of those at the conference. We have all born witness together and I am overcome with the agonizing beauty present in this reality. What was lost has been given a voice so that it is recognized as real and may never be forgotten.
What strikes me in this process is the inter-subjective nature. My son Bo is made real through recognition but also I am made real. When others bear witness to our losses we know that we exist. This is a powerful manner in which to give dignity to each patient we encounter. So, as you meet with your patients this week perhaps you can ask yourself, “How can I invite this patient to give voice to their losses? What losses have they had? How can I stand with them as one who bears witness?”
Stephen W. Mitchell, Mdiv, MAC, LPCis a doctoral candidate in Saint Louis University’s Medical Family Therapy Program. He completed a medical family therapy fellowship at St. Mary’s Family Medicine Residency in Grand Junction, CO. He is a Licensed Professional Counselor in both Missouri and Colorado. Currently he is completing his dissertation, which is a qualitative inquiry into a couple’s experience of miscarriage. He is a Clinical Supervisor at Jewish Family and Children’s Service in St. Louis, MO and spends most of his days listening to patient’s stories, writing a dissertation, and wishing he had his own DIY Network series. His research interests are pregnancy, pregnancy loss, birth, and trauma’s impact on physical/psychological health.
The Families and Health Blog welcomes you to the 2015 annual conference of the Collaborative Family Healthcare Association! We have prepared this post of suggested concurrent education sessions for conference attendees who are interested in a special focus on families and health. There is a PDF copy attached at the end of the post
Integrated and Collaborative Care Practices for Teaching Pain Management Treatment
(Emilee J. Delbridge, PhD, LMFT; Dan S. Felix, PhD, LMFT; Derrick Hasenour, MD; Ankush Goyal, MD)
A1a Friday, October 16, 2015 – Period 1 –10:30 AM (40 minutes)
“Physicians and behavioral healthcare providers work collaboratively in a Chronic Pain Management Clinic at our Family Medicine Residency, with a dual focus of caring for patients with chronic pain and providing educational opportunities for residents and other healthcare trainees. We will discuss our specific approaches which support the educational and patient/family care goals of the clinic. We will provide data about the clinical and educational outcomes in the 18 months of the clinic's existence.”
Less Suffering, More Living: Integrated, Behaviorally-Informed Approaches to Adult and Pediatric Palliative Care
(David Nowels, MD; Jackie Williams-Reade, PhD, LMFT; Barry J. Jacobs, PsyD)
A1b Friday, October 16, 2015 – Period 1 –11:20:00 AM (40 minutes)
“Palliative care is increasingly being regarded as an essential element of humane, patient-centered, and economical healthcare. Yet its focus on reducing suffering is often resisted by patients, family members and providers who equate it with giving up and accepting death. In this workshop, medical and behavioral experts on adult and pediatric palliative care in primary care and specialty settings will describe best practices employing integrated, collaborative models. They will also specifically address strategies for decreasing discomfort with and increasing acceptance of palliative care among patients and professionals.”
Unlocking Implementation in Primary Healthcare: The Family Check-Up as an Example
(Jodi Polaha, PhD; J. D. Smith, PhD; Courtney Smith, MS; Karen Schetzina, MD)
B1 Friday, October 16, 2015 – Period 1 –10:30 AM (90 minutes)
“Demonstrate traction with your new procedure, program, or protocol using the cutting-edge evidence-based implementation strategies described in this training. Real-world examples using the Family Check-Up will be described by Implementation Scientists and providers in the trenches. The audience will have the opportunity to work exercises that will apply this new knowledge to their own relevant examples.”
Childhood Obesity Prevention and Treatment: Behavioral Health and Medical Providers Partnering in Research and Practice
G1c Saturday, October 17, 2015 – Period 1 –11:40:00 AM (20 minutes)
“Given the high prevalence of childhood obesity, it is important to understand prevention and treatment efforts occurring in family medicine/primary care settings to combat this major public health crisis. This session will detail current interdisciplinary research on both childhood obesity prevention and treatment interventions that have informed childhood obesity clinical care in family medicine/primary care practices. Evidence-based findings will be presented and best practices for childhood obesity prevention and treatment within family medicine/primary care settings will be discussed.”
Linking Primary Care, Schools, and Families to Enhance Child and Adolescent Health
A2b Friday, October 16, 2015 – Period 2 –2:00 PM (25 minutes)
(Cindy Carlson, PhD; Courtney Valentine, PhD; Jane Ripperger-Suhler, MD; Jaqueline Cammerer, MA)
Three initiatives that redesign traditional health care services and structures to improve the health outcomes of children and adolescents through unique partnerships between primary care, families, and schools are described, evidence of their effectiveness provided, and lessons learned discussed.
Expanding Integrated Care Across the Lifespan: Knowledge and Skills for Pediatric and Geriatric Practice
C2c Friday, October 16, 2015 – Period 2 –2:30:00 PM (25 minutes)
(Colleen Fischer, PhD; Christopher Sheldon, PhD; Alison Lieberman, PsyD; Margaret Tomcho, MD; Amy Starosta, MA; Jill Hersh, MA)
The behavioral health issues for children and elderly patients are complex and challenging for primary care providers and caregivers. These populations tend to have developmental changes, cognitive fluctuations, caregiver considerations, and more multifaceted social stressors. This presentation will describe a grant-supported initiative to efficiently provide integrated behavioral health for high-need, high-cost primary care clinics. The session will highlight the unique assessment and treatment techniques, as well as the clinic structure and flow, in these medical clinics.
Family and Community Collaborative Care for Older Adults and Their Family Caregivers
E2a Friday, October 16, 2015 – Period 2 –1:30 PM (40 minutes)
(Barry J. Jacobs, PsyD; John Rolland, MD, MPH; Lauren DeCaporale-Ryan, PhD; Janelle Jensen, MS)
As our country rapidly ages, the future of American healthcare depends in large part on how well we serve the needs of seniors in patient- and family-centered, evidence-based, cost-effective ways. In this workshop, we will present a family and community systems model for conceptualizing collaborative care for older adults and their family caregivers, as well as introduce 3 types of integrated geriatric care: psychotherapy for family caregivers, a primary care-based care transitions program, and a super-utilizer program for frail elderly patients. Specific knowledge and skills for competent geriatric care will be identified.
Group Prenatal Care: A Pilot Project Aimed to Reduce Health Disparities in an Urban Medical Residency Program Utilizing an Interdisciplinary Care Model
C4b Saturday, October 17, 2015 – Period 4 – 10:20 AM (40 minutes)
National trends show a decline in preterm birth rates; however, health disparities including poor physical and psychosocial health remain for pregnant underserved patients. Results from a feasibility study testing group prenatal care in a family medicine residency program utilizing an interdisciplinary care team will be discussed. Initial outcomes, and discussion of the unique adaptations created to serve urban, underserved patients, facing disparities in birth outcomes will be presented.
Strategies for Planning, Implementing, and Sustaining Family-Centered Care Teams in Specialty and Primary Care Settings
E4a Saturday, October 17, 2015 – Period 4 – 9:30 AM (40 minutes)
(Kaitlin Leckie, PhD, LMFT; Maureen Davey, Ph,D, LMFT; Jennifer Hodgson; John Rolland, MD, MPH)
Family members influence patients' health care and clinical outcomes. Although family support is a powerful untapped resource, most primary and tertiary care teams have not been able to routinely evaluate, target, and utilize family support. Operational, clinical, and financial challenges can prevent family-centered approaches to care. In order to address this gap, each presenter will highlight how innovations in funding and team-based clinical approaches can facilitate more family-centered approaches to integrated care.
MEND: A Multidimensional Family Systems Based Approach to Chronic Illness
E4b Saturday, October 17, 2015 – Period 4 –10:20:00 AM (40 minutes)
(Jackie Williams-Reade, PhD; Daniel Tapanes, MS; Mia Pandit, PhD; Griselda Lloyd, MS)
The facilitators will provide an overview of the MEND program to illustrate how it can be utilized in a family systems based program, for both the pediatric and adult populations. In addition the presenters will highlight the use of MEND as an intervention with the veteran population. This section will provide a brief summary of the MEND manual. This includes: 1) the conceptual framework and underlying assumptions, 2) the organizational structure, 3) phases of change, 4) assessments and interventions, and 5) post intervention guidelines.
Hold Me Tight: A Couple Support Group Program for Cancer Patients and their Partners
A6a: Saturday, October 17, 2015 – Period 6 – 3:30 PM (25 minutes)
Each year thousands of couples are affected by the diagnosis and treatment of cancer. Yet our current healthcare system does not routinely provide psychosocial support for couples coping with cancer in a partner. We adapted a promising couple support group, Hold Me Tight (HMT: Susan Johnson, 2009), to reduce distress, improve quality of life, and help couples cope with a partner who is receiving oncology treatment. Given the racial and socioeconomic disparities in cancer incidence, we recruited a minority low-income sample of couples.
Brief Couple-Based Interventions: Getting to the Heart of Coping with Chronic Illness
A6b Saturday, October 17, 2015 – Period 6 –4:05 PM (25 minutes)
(Ruth Nutting, PhDc; Jennifer Harsh, PhD, LMFT; Sean Hearn, MD)
Over half of the American adult population lives with chronic illness. Researchers have highlighted the need for greater attention to be paid to chronically ill individuals' partners’ psychosocial well-being in addition to the well-being of the chronically ill person. Although couple-oriented interventions are often more effective than individual-focused interventions in promoting positive coping, many healthcare providers are not trained to intervene at the couple level. Brief interventions that are commonly used with individuals in medical settings can be modified to target the couple system.
Fathers Matter: The Financial, Operational, and Clinical Implications of Paternal Peripartum Depression
F6a Saturday, October 17, 2015 – Period 6 – 3:30 PM (25 minutes)
(Cassidy J. Freitas, MA,)
Peripartum depression is a significant condition that has the potential for injury and death to parents and children. Today, increasing attention is given to fathers with peripartum depression who are at-risk due to the changes in identity, relationship, and biology that occur when they become parents. Collaborative medicine offers a unique opportunity to detect and provide encompassing care to fathers and families impacted by this mental health problem. C.J. Peek's Three World View will be utilized to provide action steps within the financial, operational, and clinical realms of integrative health care as they pertain to Paternal Peripartum Depression. A multi-disciplinary model for treating Paternal Peripartum Depression will be described.
Posted By Tina Schermer Sellers,
Tuesday, September 8, 2015
I remember many years ago when my daughter and god-daughter were playing in her room just off the kitchen. The girls were about four at the time. My friend and I were in the kitchen making dinner and sharing a glass of wine when one of us looked over at the room and said, "It’s been a little too quiet in there”. We quietly approached the door and could hear the girls whispering and giggling. As we opened the door we were presented with a live Rembrandt. Both girls were stark naked and with their bodies as the canvas, had colored all over each other with colored markers. It was clear that the whole body was used, not just parts. To this day I still regret not grabbing the camera before I said, "Oops! Markers are for paper and you girls need a bath!” Karen and I had a good laugh, in part because we knew this was normal curiosity at this age (I had been through it with my son), because one of our favorite kid’s books was Purple, Green and Yellow by Robert Munsch, and also because the markers were washable!
A vast majority of the people I have interviewed or counseled during my career tell stories of being yelled at, humiliated or embarrassed when "caught” playing doctor with a same age neighbor, cousin, sibling or friend when they were five or six. Many other stories are told of ‘being caught’ when engaged in developmentally normal sexual curiosities and behaviors in childhood and adolescence. When this is coupled by an otherwise silent conversation about sexuality and an authoritarian or controlling parenting style, children deeply root shame and worthlessness within themselves.
In my research I have found that at least 90% of people raised in the U.S. have grown up in homes that were mostly silent, ignorant and often reactive about sexuality and sexual development. When kids do not feel safe to ask questions about their body and pleasure and do not feel safe to exhibit normal curiosities about their genitals and pleasure, they feel shame! Shame says, "Something must be wrong with me. Something must be wrong with who I am, not just what I do.”
We are born sexual. Yet childhood sexuality is as ignored and thus poorly understood as adult sexuality. Infant and childhood sexuality is about being playful and sensual and doing what feels good. Whether alone or with playmates, this is as natural a developmental phase for humans as learning to walk. Yet unlike stories of learning to walk, most people tell stories of being sexually shamed or otherwise injured by what is fundamentally a sexually reactive, ignorant and stunted society.
The One Thing I Tell Young Parents
The most important thing young parents can do to help their child to develop a secure sense of sexual health, beyond the obvious factors of safety and protection, is to understand the developmental tasks of their child, including their sexual, sensual, and physical curiosities. This requires preparing for their curiosities and in-opportune comments (like walking in on you having sex, putting their hands down their pants in the grocery store or peeing on the church lawn). Being prepared buys you time to decide how to respond to such an event, instead of react. This also includes the ongoing plan to have one hundred, one minute conversations about sexuality, bodies, relationships and gender along the way … NOT ONE, ONE-HUNDRED MINUTE (PAINFUL) CONVERSATION!
Think of the life education conversation (which includes sexuality) as a conversation that happens at least weekly. Look for opportunities to frequently say a little something. This is why you want to be one step ahead of them developmentally and aware of what is coming next! The more often you talk about the normalcy of sexuality and intimacy in the human condition, the easier it becomes for everyone! Research shows that parents who do this, not only help to assure their child a healthy sense of self, but kids who grow up with ongoing sexual health conversations with their parents describe themselves as closer to their parents overall!
The Four Things I Tell Adults to Grow Healthy Sexual-Esteem and Sexual Intelligence
1. FRAME your knowledge. Get sex education. Learn about your physical body and the physical body of the other gender. Learn about arousal cycles, safe sex, and STI’s. Learn about your own pleasure - what your own body is like. See it as a miracle – unique, unlike anyone else’s. You be the expert on this unique and special body. Learn about gender and power messages in our culture. With friends, watch documentaries such as Miss Representation and The Mask You Live In by the Representation Project, and discuss social and cultural pressures, and how to protect and support each other. If you are a woman, role play how to stand up for yourself. If you are a man, role play how to protect women. Learn about intimate relationships. Read books like The Heart of Desire by Stella Resnick, Sexual Awareness by Barry McCarthy, Love Sense by Sue Johnson and listen to Men, Women and Worthiness by Brene Brown.
2. CLAIM your body. So much of culture is aimed at inviting you to despise or disapprove of your body or appearance so that in your dissatisfaction you spend more money. But life is too short. You have a right to appreciate every day the gift of your life, the health of your body, the beauty of your uniqueness, and your desire to be seen, known, loved and accepted. This is yours to claim and to live boldly and loudly. Each day. Do gratitude lists. Write affirmations. Let your thoughts lead you to new feelings, and ultimately to new actions. Feel in your body the places of joy, gratitude and love. Live from these places. Let yourself know sensual pleasure and play. Find that inner child and discover your body again and the joy it can bring you. Learn to befriend and inhabit the power in sexual arousal. If there are places in your body that feel tight or hurt, learn to listen deep to the story within. Learn to give to yourself whatever amount of love and grace is needed for any hardship or pain you have suffered. Always give yourself permission to heal and to find whatever help you need.
3. NAME your story. If your sexual story up to this point has been shrouded in secrecy or ignorance or trauma, fear or shame, find a safe tribe of compassionate, loving, and empathic people who can hear your story and love you in and through it. Shame cannot live in the presence of love. Your story needs to be witnessed and you deserve to feel love and compassion. You cannot grow up in a culture as sexually silent, ignorant and confused as ours and not have heaps of shame. Nothing is wrong with you! You were fearfully and wonderfully made. You have done the best you could with what you were given. You deserve to have your story heard, and grace and knowledge to be granted.
4. AIM to write your story of sexuality and intimacy in any way that will bring you joy and nourishment. This is your story and it is yours to write. What are your values, your hopes, and your desires? Aim to write this sexual story. What is the legacy you want to begin to live into? What is the story you want to share with your children or nieces/nephews? You get to write your sexual story everyday by the choices you make. What do you want your new story to say? When will you know you are ready for varying degrees of vulnerability (emotionally/physically/relationally/spiritually)? You determine this. This is your story. What will be the story to honor the beautiful unique gift that is the sensual powerful you?
When I imagine more people living boldly and unapologetically into the gift of their sexuality in ways that allow them to feel deeply seen, known, loved and accepted and in ways that heal generations of ignorance and shame, I can imagine more giggly little four year olds surprising their mothers by their curious naked antics. And I can imagine more mother’s laughing, rather than reacting, remembering to grab their cameras before hoisting them off to the bath!
Dr. Tina Schermer Sellers, PhD, LMFT is the Founder and Medical Director of the Northwest Institute for Intimacy (NWIOI). The Institute provides comprehensive training to therapists, integrating the critical skills of sex therapy and relationship counseling. www.tinaschermersellers.com Tina is also an Associate Professor in the School of Psychology, Family and Community at Seattle Pacific University and Director of Medical Family Therapy.
"So, Mr. Oldman, you’re 65, and you now have Medicare coverage. Let’s talk about what you want when you… you know...when you get to the end of the road.” This is an imaginary conversation opener, but it touches on reality. Right now the only time physicians can get paid for what is surely one of the most important (and difficult) discussions in a patient’s care is at the "Welcome to Medicare” enrollment visit, the least likely time the topic is high on either person’s agenda.
That will change in January 2016 if a proposed Centers for Medicare and Medicaid Services (CMS) rule goes into effect. The proposal is part of an annual update of Medicare’s physician payment schedules. The final rule will be published Nov. 1, and it will include the fees a physician or other professional member of the care team (probably a nurse, physician’s assistant, or social worker) will be paid for each of two advance care planning visits.
A similar proposal in the original Affordable Care Act legislation was derailed by spurious accusations about "death panels” denying care to older people. Some doctors already have these conversations, but payment may be an incentive for many others. And where Medicare goes, private insurance typically follows.
The discussions will be voluntary; predictably some people will opt out, but many others will welcome the opportunity to talk about their wishes if they have an advanced illness. Sometimes their wishes may be general: "I want to die at home,” or "I want everything done to keep me alive.” Some wishes may be very specific, describing treatments they do not want, often based on what happened to a family member whose death went badly.
Barriers to Advance Care Conversations
Regulations can only set out a basic framework. The proposed rule is necessary but not sufficient because the lack of payment is only one deterrent for these conversations. Although some doctors and other professionals have developed good communication skills and can sensitively address advance care planning, this is not something typically taught in medical or nursing school. Some professionals by example convey to trainees the message that this kind of conversation is to be avoided, cut short, or handed off to someone else.
If the discussion takes place in a hospital with a hospitalist in charge, no one on the care team may know the patient. Coordination with a doctor who has been treating the patient and knows more about the patient’s wishes is erratic at best.
Even within medical specialties, attitudes differ. One study conducted by researchers at the MD Anderson Cancer Center found that oncologists who specialize in hematologic malignancies such as leukemia reported being less comfortable discussing prognosis and advance care planning than oncologists treating solid tumors. The hematologic oncologists also reported feeling a greater sense of failure than their solid-tumor colleagues about their inability to change the course of the disease, and were less likely to report satisfaction in providing end-of-life care.
Talking frankly about the likely course of a disease, and the potential risks and benefits of particular treatments, challenges a physician’s own sense of control and power over disease. Talking about death is taboo in many cultures, and the medical culture has its own way of both managing death and distancing itself from it.
Involving Families in Advance Care Planning
An important aspect of the proposed rule is its inclusion of families. Patrick Conway, chief medical officer of CMS, says that the proposal "supports individuals and families who wish to have the opportunity to discuss advance care planning with their physician and care team, as part of coordinated, patent- and family-centered care.” "Family” is a broad term that encompasses many relationships. The patient is the best judge of who should be included.
Families play a critical role in advanced illness often as both care providers and care managers. Families know the person, the trajectory of the illness, and the way the person has reacted to other challenges. They are often better historians of the illness than the patient, and can provide valuable information and insights.
Some health care providers, however, see the patient, and only the patient, as their responsibility. Inviting family members into the discussion opens up their complex history and relationships, another layer of potential discomfort.
In these situations some providers say that they cannot talk to family members because it would violate HIPAA privacy rules. This is a misunderstanding of the law. HIPAA does not prevent health care providers from sharing personal medical information with family members, as long as the patient does not object. HIPAA does not require the patient’s written consent. And while some patients may not want anyone else to be part of the discussion, their true intent is usually to protect them from bad news, not from privacy concerns. Such thinking is understandable; nevertheless, professionals should encourage the patient to identify a few key people to be part of the discussion.
Families are likely to be more trusting of health care providers who communicate with them, acknowledge their fears and worries, and offer emotional support. Conflicts within a family or between professionals and family can never be totally avoided, but honest and frequent discussion can reduce the tension. In some cases a full family meeting can be helpful to clear up misunderstandings and arrive at a consensus about the goals of care and the treatment plan.
Five Suggestions for Implementation of the Payment Rule
Assuming that the rule goes into effect (and even if it does not), physicians and other members of the care team can do a lot to make these discussions go more smoothly.
First, doctors and other team members should discuss among themselves their own level of comfort or discomfort with these conversations. Within the health care team, it should be clear who is responsible for having these discussions.
Second, if the patient has not already done so, the team should encourage him or her to select a health care proxy. That surrogate should be someone who understands the patient’s wishes and can apply them to the situation at hand, becoming the legal decision maker if that becomes necessary. The documentation designating this person should be readily available for the whole care team.
Third, the patient should document his or her wishes. This can be a state-approved advance care directive, or a more informal statement like the "Five Wishes” document. This does not answer all the questions that may arise in a particular situation, but it can guide the decisions that often have to be made in a crisis.
Fourth, advance care planning is not a one-time-only experience. Even the two visits proposed by CMS seems inadequate for complicated cases. The decisions made at an earlier time may need to be revisited and new clinical information considered in the calculus. Most people do not understand risk statistics so this kind of information needs to be presented as it relates to the particular patient, not the population of patients of which she is a part.
Fifth, professionals who bill for advance care planning should be able to demonstrate their ability to hold these conversations in language that is clear, respectful, and compassionate. That might mean some interactive video training or on-site visits by an expert in the field. Talking about advance care planning requires comfort with the subject, skill in listening as well as talking, and empathy for the people whose lives will be affected by the decisions.
Carol Levine directs the Families and Health Care Project at the United Hospital Fund. She is the author of Planning for Long-Term Care for Dummies (Wiley 2014).
As a former defense attorney in Southwest Georgia, I had the privilege of working in one of the first mental health courts in the country. It was my job to facilitate initial contact with the court, and represent clients who violated terms of their mental health probation or mental health court rules. Based on these experiences, I want to help healthcare practitioners understand the resources for people with mental illness who find themselves in the criminal justice system.
Mental health is a very serious concern in the criminal justice system. It is estimated that 20 percent of those in jail and 15 percent of those in state prisons have a serious mental illness. Based on the total number of inmates, this means that there are approximately 356,000 inmates with serious mental illness in jails and state prisons. This is 10 times more than the approximately 35,000 individuals with serious mental illness remaining in state hospitals (Torrey, Zdanowicz, & Kennard, et al. 2014). This statistic does not account for those with milder mental illness who may be in jails and prisons.
Over the years, practitioners in the justice system recognized that many people who are incarcerated or placed on years of probation suffered from some sort of mental illness. The problem with jails and prisons is that they are not the best place for someone with mental illness. Because of budgetary constraints, jails and prison cannot provide the sort of care that one can receive outside. Many times I would have clients complain that their psychiatric medications were changed and not as effective. Many people decompensate in jail. Their conditions become markedly worse and noticeable even to the lay person. It can become a vicious cycle as people are placed in jail or probation without adequately addressing their mental health issues. They are eventually released and often recommit a crime. This places strain on the justice system, community, clients, and their families. The natural conclusion is that jail and prison sentences simply do not work for those who have mental illness.
Mental health courts were created to address many of these concerns. In 1997, there were only four mental health courts in the U.S. Today, that number has grown to over 300, with programs in almost every state. (Justice Center, n.d.) Mental health courts target those who have a mental illness and frequently appear on court dockets or who have several probation violations. The mental health court uses a collaborative approach to help those in the program.
Mental health courts typically comprise of a judge, a court coordinator (a registered nurse that does mental health screening), probation officers, caseworkers (who often specialize in mental health and or substance abuse), public defenders, and prosecutors. Training is provided to all involved to help address mental health issues. Typically, mental health programs will accept those with non-violent felonies who have serious and persistent mental illness, comorbid mental illnesses, and substance abuse disorders. Common diagnoses include bipolar, psychotic, depressive, and anxiety disorders. The court draws on community resources like crisis stabilization units, residential programs for individuals with specific diagnoses, detoxification centers, transitional aftercare centers, and programs that provide transportation assistance, case management, and assistance applying for benefits and entitlements. This collaborative approach helps address virtually every obstacle that a person with mental illness may have in the criminal justice system. But many times, the mental health court goes further, by providing assistance with benefits, health care, and transportation. (Bureau of Justice Assistance, n.d.)
The mental health court uses a collaborative approach to help those in the program
A vital component to the mental health court is the family unit. I found that strong family support can be the most important factor in keeping an individual out of jail. Many times those with little to no family support struggle with medication and appointment compliance and wind up in jail. Families can play a vital role in providing this support and advocating for their relative. The court typically wants to see that the person with mental illness has someone to help them take their medication, give them a place to stay, work with mental health court staff, and assist the client with appointments. When the court sees this, it is much more likely to agree to keep that person out of jail and in mental health court.
Clinicians and health care providers should be encouraged to see if mental health courts exist in their community. My guess is that they probably do, even in more rural communities. This can be done by calling the Clerk of Court in their jurisdiction. Another option is an online search for "name of local county and mental health court”. However, less developed mental health courts may not have a strong online presence. It is especially important for clinicians to look into this if they serve a population that has frequent or high encounters with the justice system. They should encourage families to approach their defense counsel about mental health court as an alternative to regular probation or jail. Many times counsel is not fully aware of a client’s mental health issues, making information from both clinicians and family invaluable. This input can drastically change the way defense approaches a case, resulting in the client having more appropriate treatment and, hopefully, staying out of jail.
The bottom line is that mental health courts are very important pieces in the criminal justice system. They decrease recidivism and effectively and respectfully serve those with mental illness.
Bureau of Justice Assistance, (n.d.). Dougherty Superior Court, Georgia, Mental Health Court: Program description. Retrieved from: http://csgjusticecenter.org/mental-health/learning-sites/albany-mental-health-court/
Torrey, E.F., Zdanowicz, M.T., Kennard. A.D. et al., (2014). The treatment of persons with mental illness in prisons and jails: A state survey. Treatment Advocacy Center, Arlington, VA.
Justice Center (n.d.) Mental health courts. Retrieved from: http://csgjusticenter.org/mental-health-court-project/
Robb Hunter is an attorney with Monnat & Spurrier, Chartered, in Wichita, Kansas. He brings impressive trial experience honed in the courtroom slug-fests of Southwest Georgia where he performed the tough work of a Georgia State Public Defender. In that role, he worked in the Dougherty County Mental Health Court representing clients with mental illness and advocating for their proper treatment. Mr. Hunter is admitted to practice before the federal and state courts in Kansas, Minnesota, and Georgia, as well as before the Georgia Court of Appeals, Federal District Court Middle District of Georgia, and the Supreme Court of Georgia. He is a member of the Wichita Bar Association, Kansas Bar Association, and Georgia Bar Association.
Posted By Nicole Rubin, Deron Ferguson, Linda Franck,
Wednesday, July 29, 2015
Finding a place to stay can be a major stressor for families traveling long distances for their child’s hospitalization. When the necessary specialist pediatric medical care is not available near home, uncertainties about transportation and accommodation become sources of both emotional and financial stress.3 Hospitals can play a greater role in understanding each family’s accommodation needs, before their hospital stay when possible, and can work to ensure these needs are adequately met upon arrival so that the family is able to focus more fully on the child and their care.
Families want to stay together when their child is hospitalized and believe it helps improve their child’s recovery. Families of seriously ill children want to be with their child as he/she receives treatment and do not want to be separated from spouses, partners and other children for extended periods of time. In the first in a series of studies examining the questions of accommodation and proximity, we found that families who stayed together for at least some of their child’s hospitalization believed more strongly that their presence nearby improved their child’s recovery. They also believed that RMH helped their family to stay together. Cultural differences were evident, with Hispanic families believing more strongly that RMH shortened their child’s hospital stay.4
Nearby purpose-built accommodation provides families with much-needed rest while enabling them to stay close to their hospitalized child. In another study5, we measured sleep quantity and quality in parents who stayed in a RMH and those who slept at the child’s bedside. We found that parents who slept in the child’s hospital room had poorer sleep (more awakenings and feeling less rested after a night’s sleep) than parents who slept in the RMH. Nearby family accommodation may facilitate parent-child proximity during a child’s hospitalization while also providing parents with opportunities for essential sleep.
Families who stay in nearby purpose-built accommodation report more positive patient experiences. In our most recent study of 10 hospitals that provide pediatric services across the United States6, the most common accommodation for pediatric inpatient families was at the bedside (76.8%) and for neonatal intensive care families was in their own home or the home of a relative or friend (47.2%). Yet those families who stayed in a RMH reported significantly higher overall experience scores for their child’s hospital stay, were more likely to recommend the hospital and were more likely to view their accommodation as being helpful to staying involved in their child’s care than parents who stayed at the child’s bedside or their own homes. This study highlights how nearby accommodation that includes family peer-to-peer and other support services helped improve the quality of the hospital experience for these families.
Hospital leaders worldwide understand that meeting the accommodation needs of families is an important part of enabling family-centered care. While hospitals are appropriately focused on providing excellent medical care to those they serve, an international survey of hospital leaders also demonstrates an understanding that caring for the whole family allows better care for pediatric patients.7 Hospital leaders reported positive opinions about the contributions of their RMH affiliation to their ability to serve seriously-ill children and their families. This included such important outcomes as increasing family integrity and family participation in care decisions; and decreasing psychosocial stress and hospital social work resource burdens associated with lodging, food, transportation and sibling support.
What is it about the family accommodation program that makes such a positive impact on families and their hospital stay overall? It is not just proximity, lodging or a reduced financial burden. The program is designed to provide comfort, care and support to families through a shared experience with other families facing similar challenges, through activities and meals designed to provide a break from the stresses of daily caregiving, and through a comfortable and uninterrupted night’s sleep.
Future research is needed to understand what can be done for all families with hospitalized children. It is important that further research aim to understand how to better support families who are not traveling long distances to help provide more of the benefits that seem to be associated with an RMH stay. Psychosocial support, a community of families facing similar challenges and forced separation from the chores and expectations when one is at home may be important factors to consider.
1. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM. Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal 2012;16(2):297-305.
2. Kuhlthau KA, Bloom S, VanCleave J, Knapp AA, et al. Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics 2011; 11(2):136-143.
3. Daniel G, Wakefield CE, Ryan B, Fleming CAK, Levett N, Cohn RJ. Accommodation in pediatric oncology: Parental experiences, preferences and unmet needs. Rural and Remote Health 2013;13(2):2005.
4. Franck LS, Gay CL, Rubin N. Accommodating families during a child's hospital stay: Implications for family experience and perceptions of outcomes. Families, Systems and Health. 2013;31(3):294-306.
5. Franck LS, Wray J, Gay C, Dearmun AK, Alsberge I, Lee KA. Where do parents sleep best when children are hospitalized? A pilot comparison study. Behavor Sleep Med 2014;12:307-316.
6. Franck LS, Ferguson D, Fryda S and Rubin N. The child and family experience: Is it influenced by family Accommodation? Medical Care Research and Review 2015 [Epub ahead of print] pii:1077558715579667
7. Lantz PM, Rubin N, Mauery DR. Hospital leadership perspectives on the contributions of Ronald McDonald Houses: Results from an international survey. Journal of Health Organization and Management 2015;29(3):3881-392.
Nicole Rubin, MHSA, is the Founder and Principal of Impact Solutions, LLC, where she works with nonprofits on strategic planning and assessing impact. She formerly served in a variety of leadership roles for organizations such as Ronald McDonald House Charities of Southern California, Susan G. Komen for the Cure Greater New York City Affiliate and Methodist Health Care System in Houston, Texas.
Deron Ferguson, PhD, is the Director of Analytics at Qualis Health. Qualis Health is one of the nation's leading population health management organizations. He most recently served as Senior Director of Research and Analytics for the National Research Corporation.
Dr. Linda S Franck, RN, PhD is Professor and Jack & Elaine Koehn Endowed Chair in Pediatric Nursing at the University of California San Francisco School of Nursing. Her research program includes investigation of patient and family experience of health care and engagement of parents and children as partners in pain management and in research to improve quality of care and quality of life.
Are patients with chronic illness motivated to learn how to protect their relationships as a benefit to their health and well-being? Can clinicians teach what we know about the complex connections between health and our intimate relationships in a practical way? Those questions led me to propose a six-session class, "Flourishing with Love and Health," for active seniors through the University of Montana Osher Lifelong Learning Institute (MOLLI) in Missoula.
The class drew on the best recent research supporting the health benefits of positive relationship interactions and the damage to health and well-being that can occur with negative ones, which Theodora Ooms and I described in a Families & Health blog post, and have written about extensively for the National Healthy Marriage Resource Center. The class included evidence-based strategies for maintaining couple well-being under stress, and for working as a couple team with health providers.
Here's the outline of the six 90-minute sessions.
· Intimate Couple Relationships in the Last Phase of Life: 21st Century Couple Lifespans
· Love on the Brain: Neuroscience Findings on Human Love and Attachment
· Evidence for the Health Dangers of Relationship Discord, Negativity and Withdrawal
· Intimacy and Touch: Does it Matter Now? What the Science Says
· Managing Your Health as a Couple Team, Part I
· The Couple Team, Part II: What to Do and What Not to Do
The participants who signed up for this class were active seniors ranging in age from late 50's to 85. There were 4 couples (the 84-year old pair sat right up front so they could hear) and 17 single partners, the "well" caregiving spouses. They brought to the class their current experience with various cancers, heart disease, Parkinson's, and dementia. One individual was in a long-standing same-sex partnership, and there was one widower beginning to envision a new relationship for himself after his wife's death from cancer. None were Pollyannaish about what lies ahead.
After the first session, a woman in her early 60's, married some 30 years, came up and said:
"You know, I always imagined that someday I would be moving to New Mexico with some girlfriends, to live in an adobe casita where we could write, paint, hike (long pause) -- that's not going to happen, is it?"
No, it's not likely. She's in the generation already experiencing the demographic shift from "couple mortality" by age 70, to "couples aging together" well into their 80's and 90's.1 Her husband didn't come with her. But I imagine that like many men in Western Montana, he may have his own fantasy about how his life will play out:
"Someday I'll be out on Rock Creek, the salmon flies will be hatching, and I'll cast one more time into that big pool --and suddenly drop dead of a heart attack, right in the best blue-ribbon trout stream in America."
That's not likely to happen either.
As this woman realized, she's in the growing generation of still-coupled patients in their 70's and 80's They are the accessible and motivated ones we can and should be reaching and educating now. They want answers to the following questions: How do couple interactions affect physical health? What kinds of behaviors cause harm? What can we do to protect our relationship from the stresses of illness and treatment? Is it worth the investment of our time and energy?
When I started looking for 'what works,' I found far more useful, practical strategies in peer-reviewed research journals than I expected -- encouragement for those of us who want to rely on evidence-based interventions. RCT studies provide specific descriptions of what to say and not say to partners, in order to encourage adherence to medical regimens. There are specific communication strategies and behaviors that strongly correlate with health consequences (negative and positive) in major national surveys such as the National Social Life, Health and Aging Project (NHSAP)2-4, and the MidLife in the US (MIDUS)5. I found couple-focused strategies for planning doctor visits beforehand, and excellent new video tutorials for how to ask questions and to become active participants as a team..
Participants said that understanding the research gave them the confidence to talk with health care providers about what matters as a team and they valued the research basis for practical tips. They liked the new neuroscience research on how the body and mind are inextricably linked. They were motivated by understanding Kiecolt-Glaser's research on the 'cascade' from relationship conflict & distress to chronic physiological arousal, to lowered immune system response, to injury or infection, to higher inflammatory response6-7. Everyone appreciated Session 4, about why maintaining an intimate love life is good for both partners' health, why the oxytocin release from touch and intimacy is so critical to well-being, and how to "enlarge your repertoire" when performance falters (Yes, I really did talk about this).
By the 5th session, class participants were willing to write down and share their own stories of successes and failures in managing their health care encounters. So we developed our own "Best Practices" list of everyday activities and strategies to protect relationships from the damaging effects of serious/terminal illness, to bolster the health of both couples, and to maintain couple well-being even in the face of a terminal diagnosis. And I learned that there's real payoff in teaching just one partner how to protect a relationship and avoid damaging interactions (remember, 17 of the participants were there without partners). A common response on the evaluations was 'I learned so much." So did I, by having to research and develop this class.
I want to encourage clinicians working in medical and health care systems and those training new clinicians for health care practice not to wait for the health policy makers to understand what we already know about the importance of intimate relationships for older patients. Can we go beyond crisis interventions, assessments and counseling to share what is already known in seminars, classes or in individual consultations? I believe we can teach the specific communication skills needed to discuss illness and work together as a health care team, to be advocates for each other's health, to block negativity and discord, and to protect their relationship even as severe health conditions are encountered. As health systems move toward paying for outcomes rather than treatments, patient education will only increase its value, particularly by improving adherence rates. The health benefits of increasing adherence to medical regimens is a good issue to start with8, but we don't need to stop there.
Months after this class ended, I encountered the wife of a local health provider (he and his wife were one of the 4 couples). He's still active while struggling with advancing Parkinson's. Her face just glowed as she described how much better their most recent physician visit went. "It was SO different! I knew how to ask questions, knew I needed to speak up and be involved. And my husband and I were able to talk about it ahead of time, so he didn't get upset with me." (This from someone who's already had years of coping with Parkinson's). She said their doctor (a neurologist specializing in Parkinson's) was surprised at first, but seemed pleased, and the result was that he spent more time talking with them.
Jana Staton, has her doctorate in counseling psychology, and currently works as a marriage and family therapist and couples educator in Montana. She is author of A Few Months to Live: Different Paths to Life’s End, with Roger Shuy & Ira Byock. If there are clinicians offering similar interventions or training family therapists for health care settings, who are interested in, or already incorporating this perspective into curriculum, she would be glad to share the "Flourishing" syllabus, research basis and practical tips. You can contact her directly at email@example.com
2. Hui, L. & Waite, L. 2014. Bad Marriage, Broken Heart: Age and Gender Differences in the Link between Marital Quality and Cardiovascular Risks among Older Adults. Journal of Health and Social Behavior, 55(4) 403–423. DOI: 10.1177/0022146514556893. http://hsb.sagepub.com/content/55/4/403.abstract
Cyberbullying is a topic that I became interested in back in 2011 as a pediatric resident. Reports of suicides by children due to online bullying were starting to pop up in the media with increasing frequency, yet no one was sure how to respond. Our society was again being confronted with the harsh reality that sometimes the most amazing technology could be used to cause devastating harm. Over the years though, society rallied and addressed this issue in some remarkable ways. By using both knowledge and a proactive approach, healthcare providers can make a meaningful difference in cyberbullying.
Cyberbullying is defined as when a child or adolescent is tormented, threatened, harassed, humiliated, embarrassed or otherwise targeted by another child or adolescent using the Internet, other digital technologies and/or mobile phones. It is very important to note that these interactions are occurring between two minors. If a person over the age of 18 years is involved, this persecution is now called "cyberharassment” or "cyberstalking” which is illegal. Offenders can be punished by law in every state. As the legal system has growing exposure to cyberbullying, the new trend is to allow the victim to define when harassment is occurring. If someone feels threatened or tormented then bullying is occurring, regardless of the other child’s intent.
Historically adults responded to cyberbullying much the same way we advise a child to handle school yard bullying. "If you just ignore them, they will go away”. Sadly this was terrible counsel. Unlike a school yard encounter, when one is using digital media there are no non-verbal cues to help us understand the intent of the words being hurdled at us. All of us have had a misunderstood text message: "was that meant to be playful, sarcastic, or just plain rude?” For children who are learning socialization skills this task is even more overwhelming. Additionally, today’s children are expected to be competent digital citizens in their personal, and eventually, professional lives. Ignoring slanderous comments that will live forever on the internet is not an appropriate option.
Foremost, children should be taught how to use digital media in a safe and courteous manner from their first interactions. While we encourage children to never post personal information about themselves online, we should also explain their words and actions now could affect future opportunities. When they load that post or photo, what will their grandmother think? What about their pastor, or future employer? Is the post even necessary if it is unkind or shaming of others? (This goes for frustrated parents as well.)
Parents should be encouraged to "snoop”. Just as children are not allowed to have secret friends, go on play-dates unsupervised or to watch adult-rated content alone, they should not be allowed to have secret online lives. I encourage the use of "digital media agreements” as a kind of contract between parent and child. This way children know exactly what kind of behavior is expected while they are online or using a cellphone. Children will also know when to get their parents involved if they are being cyberbullied. These media agreements can be found online at commonsensemedia.org. This site also helpfully rates movies, video games, TV shows, web pages, etc.
When cyberbullying is discovered, it is crucial to not respond in kind- whether one is a child or an adult. Saving the conversation is important. Screenshots are the best evidence, but even recording the date/time of and an explanation of the encounter can be helpful to authorities. If the bullying is still relatively mild it is acceptable to call out the poor behavior, though one should never attack the person. It is appropriate to say, "This post is mean and hurtful. Please remove it.” It is inappropriate to say, "I think you’re an annoying jerk.” The internet is rife with conversations that have dissolved into hate-filled rants of personal attacks. This trollish behavior should be named for what it is and not be tolerated by adults.
We should be role models to children in our own actions while online. Children should be encouraged to report cyberbullying immediately to an adult, even if they are only witnessing it. Parents should also note that only 9% of children are purely a victim. Cyberbullies are often victims and vice versa, therefore parents should see if their own child’s actions triggered the current situations. If the bullying is persistent or even begins to escalate families can contact webservers and internet service providers promptly. Many social media sites and internet service providers have ‘contact us’ options for emailing or calling. Some sites allow you to block the offending person from being active within your account. Facebook, for example, has introduced options so individual posts can be reported.
If the online behavior becomes threats of harm, violence, or extortion families should immediately contact the police. If your child ever receives pictures of another nude minor this should also be immediately reported as these images are considered child pornography and possession is a crime. Children should be warned to never post nude photos of themselves, as distribution of child pornography is also a severe crime. In many cases families can also reach out to schools for help when their child is being cyberbullied. Each school district will have a unique policy though and parents should take the time be aware of their local policy in advance.
As medical providers one of the best ways to make an impact is to seek out and identify when cyberbullying occurs. Many children and teens will attempt to hide the fact that they are being bullied as they fear adult involvement will make the situation worse, or that their online privileges will be revoked. Children should be specifically asked if someone has said mean or hurtful things about them online, sent nasty text messages, or even threatened them. Many children also express doubts of the competency of adults online. Having an active, professional web presence, especially through social media, can demonstrate to your patients your proficiency in the digital world. Review with families the rules of how to respond to ugly online behavior, what kinds of records to keep, how to stop their child from suddenly becoming the bully themselves, and when to contact the authorities.
Dr. Amy Seery is a native of Wichita who attended Kansas State University and KU Medical School. She completed her residency training at The Barbara Bush Children’s Hospital at Maine Medical Center in Portland, Maine. During her residency training she became a passionate obesity advocate as well as a local physician expert on bed bugs and cyberbullying. She returned to Wichita in 2011 to join the Via Christi Family Medicine Residency program as faculty. She is also currently the chair for the Pediatric Section at Via Christi Hospitals in Wichita.
Posted By Connie S. Cornwell,
Thursday, June 18, 2015
As a supervisor, it is a challenge to supervise interns working with couples and families dealing with chronic illness. We want to help the patients while also taking care of the intern in training and being aware of our own personal feelings toward illness.
This challenge was evident during a case when an intern providing couples therapy asked for live supervision. One of the partners suffering with a demyelinating disease was very upset while the other partner seemed withdrawn and unresponsive. The intern worried that the partners had much to discuss but remained silent. During live supervision I validated the intern’s perception and asked what she suspected was occurring. It was what I feared; the non-ill partner does not seem comfortable giving care and may want out of the relationship. I struggled with my own reaction: - how could he be so insensitive to his partner’s suffering? Yet he appeared uncomfortable and I suspected he resented the care giving that had taken over his life. They had never planned on this. They had things to do, and adventures yet to experience. Illness can test relational bonds and I silently wondered could my own relationship undergo such a chronic test.
I felt sadness welling up in in me and decided to check whether the intern was possibly experiencing her own sadness. I discovered that the intern was feeling hopeless and helpless. Now I too felt caught. What if we urge the partners to speak honestly and someone dies in the process? What if they feel the therapy has done harm? What if the abandoned partner is unable to recover, and the partner who leaves is demonized? All those things a family therapist dreads and sees as failure. I suggested the intern invite the couple to talk about the things they were afraid to say to each other. As predicted the partner was not sure he could remain in the marriage. He had not signed up for this, and was thinking about divorce. She suspected he wanted out, and had been making preparations to find an assistant living home. There was no scene or outburst, just silence with the confirmation of what each had not been able to say to the other. With urging from the intern, the partners began to talk about their struggles and the domination of the illness in their life. As the session ended they both appeared relieved to have been able to speak about their worst fears. The relief was also experienced by the intern and supervisor.
Topics that are off limits need to be discussed to prevent the distancing that can occur in the relationship (Rolland, 1994). Giving space for tough conversations allows for all involved to draw on their resources and to live more authentically. As a supervisor, I encourage my interns to ask the tough questions when it appears a loved one is withholding, fearing the outcome. Carl Whitaker, a family therapist, said it is the “covert that we have to make overt” or it will create havoc.
As I recommend to the intern to probe and encourage honest dialogue with and between the patients there is the fear: - will it create a damaging experience for the intern and no benefit for the patients? Remember “do no harm” is an ethical and moral premise. As a supervisor the question is: - can I handle the fallout and take care of the intern while at the same time benefitting the clients? However, before the intern can do this level of work I have to be sensitive to the spoken and unspoken fears an intern may have working with patients who are chronically or terminally ill. I invite the intern to tell her own story about experiences with illness and frame the experience as a source of strength for the intern in working with the chronically ill.
I further invite the intern to speak about what may be unspeakable for her concerning illness. It is the speaking of fears that creates openness for one to experience compassion for the other and more importantly compassion for the self. As with the couple, it is a reminder that physical fragility does not necessarily portend emotional or personal fragility. As I explain to my interns I am also reminding myself that we are not defined by illness, condition, or even our feelings or thoughts. These are experiences to be shared in hopes of becoming more open, flexible, and free. When illness is an uninvited family member it is truly a collaborative effort between intern, patients and supervisor to discover the psychosocial map (Rolland, 1994) that provides support and reassurance for these tough conversations.
Rolland, J. (1994). Families, Illness, & Disability: An integrative treatment model. New York, N.Y.: Basic Books.
Connie S. Cornwell is Licensed Marriage and Family Therapist and Supervisor, Licensed Professional Counselor and Supervisor, Clinical Fellow and Approved Supervisor of American Association for Marriage and Family Therapy and Member of American Family Therapy Academy. Ms Cornwell has over 30 years of experience as a couple and family therapist, educator, trainer and supervisor. Ms Cornwell is the Senior Supervisor of the University of Texas Southwestern Medical Center Department of Psychiatry Family Studies Center in Dallas, Texas where she is training and supervising couple and family therapy interns, medical students and psychiatry residents.
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CFHA is a member-based, 501(c)(3) non-profit organization dedicated to making integrated behavioral and physical health the standard of care nationally. CFHA achieves this by organizing the integrated care community, providing expert technical assistance and producing educational content.