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The Future of Family-Centered Care Belongs to the Robots

Posted By Matthew P. Martin, Monday, September 11, 2017

A couple years ago I was listening to one of my favorite podcasts, Planet Money, an NPR radio show that tells terrific stories about the economy, technology, and everything in between. During this particular episode, I learned about a therapist named Ellie who is a terrific listener, asks insightful questions, and requires electricity.

 Yeah, Ellie is a robot. She was developed by the military to interact with people suffering from depression and posttraumatic stress disorder. And she’s good at her job. In a series of studies, Ellie was as good, or in some cases, even slightly better than psychologists at diagnosing PTSD and depression. And, maybe more importantly, people like talking to her.

This got me thinking (and fretting a little, to be honest): can a robot do my job? Can a robot sit with a couple facing cancer and provide a therapeutic intervention? Can a robot work with parents and a teenager struggling with pediatric obesity? The answer today is probably not, so don’t hand in your license to your state behavioral health licensing board just yet.

Then I came across this recent article in the Journal of the American Medical Association about a socially assistive robot that helps patients make behavioral changes. Here’s the first line:

 

“Speaking to a group of journalists last October at the annual meeting of the American Association for the Advancement of Science, Maja Matarić, PhD, stated the problem bluntly: “There aren’t enough people for people.””

 

I believe Dr. Matarić is correct and will go even further: there aren’t enough behavioral health providers for all the patients in the world. There never will be. But are robots the answer for this problem?

Dr. Matarić would say: absolutely. Her solution is to create robots that monitor and chat with patients, coaching and motivating their human companions to do tasks they might be disinclined to do, like exercise a stroke-affected limb. She believes in the power of social influence to change behavior and plans to release the first commercially available robot in 2019.

I want one of these robots. I think they contain the potential for providing care to thousands and thousands of patients that the health care system fails to treat. Will they replace you and your amazing talents and abilities? Will they replace family caregivers and home health aides? Those are not the right questions to ask. In fact, don’t think of these metal golems as replacements for human health workers. Your mom was right: you’re irreplaceable.

Instead, think of these automatons as enhancements and supporting cast to the vital work done each day by medical and behavioral health workers like you. Imagine working seamlessly with these little helpers to assess, treat, and follow-up with many more patients that you currently help.

Recently, I worked to integrate screening and brief intervention for substance misuse prevention (SBIRT) into a large family medicine practice. We first used paper screening tools but then discovered that the medical assistants were inaccurate in scoring the results. In response, I developed a tablet version that automatically scored the screening results. Problem solved!

Then, we worked on the brief intervention service but quickly realized that the physicians were not consistently using the training we gave them. Some did a great job talking to patients about substance use but the majority either avoided the topic or reverted back to advice-giving tactics.

I solved the screening problem with technology, but what if I could solve the brief intervention problem with artificial intelligence? Imagine patients interacting with a robot that administers all the screening protocol, provides a brief motivational interviewing conversation, and then documents and transfers the responses to your computer desktop for follow-up. Now you, as the clinician, can follow up with all patients that qualify for additional support and care management. Using this robot-enhanced system, you could spend your time helping patients get what they really need.

There is enough evidence and momentum now to suggest that robots will likely begin to help with integrated behavioral health services in the next five to ten years. Will robots also help in family-centered care? Can they use a complex model like emotionally focused therapy to help a couple facing infertility issues? That future is way down the line in my mind. But here are some ways robots can help us do family-centered care in the near future:

-        Supplement home health aide services by offering 24-hour social support

-       Assess family caregiver wellbeing during a medical visit

-       Identify patients with multiple co-morbidities who may benefit from increased family support

-       Provide psychoeducation for families facing terminal illness

-       Follow-up with patients and families who recently received a serious diagnosis

These ideas may seem weird or even heretical to some. But remember what Dr. Matarić said: there will never be enough people for people. Robots can help us fill that gap. 

  Matt Martin, PhD, LMFT is Clinical Assistant Professor at Arizona State University in the Doctor of Behavioral Health Program. He is the CFHA Blog Editor. Contact him if you're interested in writing for CFHA (matt.p.martin@gmail.com) 

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Implementing the CARE Act: What’s Working? What’s Not?

Posted By Carol Levine, Tuesday, September 5, 2017

This piece is a reprint from the United Hospital Fund website. Click here for the original publication. Reprinted here with permission.

Passing a law can be easy; implementing it can be much harder. Case in point: New York State’s Caregiver Advise, Record, and Enable (CARE) Act, which went into effect in April 2016. The law requires hospitals to carry out a series of activities to ensure that family caregivers are identified, included in discharge planning, and instructed in performing post-discharge care tasks at home. One year later, it is appropriate to ask: What’s working? What’s not?

Those questions formed the basis of an April 4 webinar drawing nearly 200 hospital staff members from around the state. Presented by UHF’s Families and Health Care Project, the webinar was sponsored by the New York State Partnership for Patients as part of its goal of reducing preventable readmissions by 20 percent.*

The webinar included a summary of CARE Act requirements, a description of UHF’s Implementing New York State’s CARE Act: A Toolkit for Hospital Staff and Next Step in Care patient/caregiver guides, and a series of polling questions to elicit hospitals’ experiences in the first year of implementation. Polling is an inexact science, and the results of an online poll taken during a webinar are far from definitive. Still, they suggest areas of consensus and those in which further exploration and guidance would be helpful. And for organizations in the more than 35 states with versions of the CARE Act, this poll identifies questions that they might ask of their own hospitals.

 

PUTTING THE ACT INTO ACTION: BASICS AND TOOLS
The CARE Act requires hospitals to:

  • Offer patients an opportunity to identify a caregiver and document that person’s contact information;
  • Obtain the patient’s written consent to share medical information with the caregiver;
  • Inform the caregiver about the expected discharge date; and
  • Provide instruction to the caregiver about post-discharge care.

UHF’s CARE Act toolkit, released in February 2017, addresses each of these requirements and adds an additional step—follow up after discharge, an important aspect of hospital-to-home transitions. Because the CARE Act does not exist in isolation, an appendix provides a “crosswalk” of New York State Department of Health regulations on discharge planning and CMS Conditions of Participation that relate to discharge planning. The Next Step in Care guides for patients and caregivers are available in a short (two-page) version and a longer one; both are available in English, Spanish, Chinese, and Russian.

 

HOSPITALS’ RESPONSES TO DATE
Hospitals are working to implement the CARE Act. That was clear from the high attendance at the webinar and responses to the polling question “Has the CARE Act required major changes in practice in your hospital?” Nearly 80 percent of those responding said yes. It seems likely that many of those changes concern identification of the caregiver and creating a field for that information in the Electronic Medical Record (EMR). When asked whether their hospital had a formal process for identifying the family caregiver, again nearly 80 percent said yes. What the remaining hospitals are doing to identify caregivers should be explored. Similarly, 72 percent of the hospitals said that they have a routine way of telling patients and caregivers about the CARE Act, but 28 percent do not. 

A follow-up poll question asked hospital staff to identify the three most important things about the CARE Act that patients and caregivers should know. “Patients will be asked to identify a caregiver” was clearly the most significant, with 88 percent of the respondents choosing this answer. The second most frequent response was “Caregiver will receive instruction about post-discharge care” (82 percent) and the third was “Patient will be asked to sign written consent to share medical information with the caregiver” (69 percent). Other options included “Caregiver can say ‘no’ to acting as caregiver” (23 percent) and “Patient can decline to name a caregiver” (19 percent).

 

PROBLEM AREAS
The relatively low percentage of respondents saying that patients and caregivers should know that the patient can decline to name a caregiver is particularly interesting in light of a further question that asked for the three most significant problems in implementing the CARE Act. Here the most common response was “Patient unwilling to name a caregiver” (51 percent). Identification of a caregiver is essential for all the other steps in the CARE Act to happen, so it is important to find out specifically which patients are declining, their reasons, and how this is being addressed.

Another high-rated problem area was “Patient unwilling to name a caregiver because of cognitive impairment” (35.9 percent). This is one situation on which the CARE Act is silent; the law does refer to patients who are unconscious but can be asked when they regain consciousness, but nothing is said about patients with erratic or permanent inability to name someone.

Other broadly noted problem areas were “Patient without stable residence or support system” (46 percent)—some of these people may be among those who decline to name a caregiver—and “Named caregiver unwilling or unable to perform required tasks” (43.5 percent); an equal percentage felt that there was not enough time to perform required instruction. Of interest is the low percentage (17.9 percent) responding that patients’ unwillingness to consent to share medical information is a significant problem. Even with the additional burden of written consent (which is notrequired by HIPAA regulations), most patients want their family and friends to know about their condition and care.

 

HOW CAREGIVERS ARE BEING TAUGHT
A final polling question asked about the ways in which instruction is provided to caregivers, a key aspect of the law: 100 percent of respondents checked “Demonstration by nurse.”  “Caregiver performing tasks to demonstrate competence” was selected by 65.9 percent; it is likely that this followed the demonstration by a nurse. The other options—video instruction (12.7 percent) and group sessions (6.3 percent)—were much less common. A few write-ins noted that printed material was also distributed.

 

FUTURE NEEDS
As experience with the CARE Act grows and as potential solutions to problem areas are identified, it will be important to continue communicating with the staff charged with the Act’s implementation. Some of the issues brought forward during the webinar stem from the law’s provisions themselves, such as lack of attention to cognitive impairment. But many relate to the realities of patients’ lives—housing instability, for example—and to caregivers’ multiple responsibilities and lack of training. Hospital staff have a difficult job in a difficult time, but the patients and caregivers they serve, as well as hospitals themselves, will be the beneficiaries of their hard work.

  Carol Levine directs the Families and Health Care Project at the United Hospital Fund in New York City. She is the editor of Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014). 


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Angry Caregivers’ Misguided Blame

Posted By Barry J. Jacobs, Tuesday, August 15, 2017

Reprint from Huffington Post. Click here for original. Published here with permission.

“What made you decide to end your marriage?” I asked the exasperated 42-year-old woman in my office.

We were having one of those post-op individual psychotherapy sessions shortly after the couples therapy I conducted with her and her husband had failed. Our bid to save her marriage had gone poorly from the start. A year ago, her husband had had a major heart attack that killed 40% of his heart muscle and left him weak and highly anxious. Every time he felt chest pain in the months afterwards, he was convinced he was having another heart attack and repeatedly called 911 to carry him out of his workplace on a stretcher. (No further heart damage was ever detected in the emergency room.) As a consequence of these disruptions, several different employers had fired him in quick succession. During our couples sessions, he pleaded with his wife to be patient with him until he found a position that suited his now diminished physical abilities and he regained confidence in his health and safety. But she eyed him coldly and expressed no empathy—only anger.

“I’m tired of working and working and working,” she complained to me during our individual meeting. “I have to take care of the house and do hair and everything. And he just doesn’t do anything. I’m tired of him saying he can’t do things.”

“But don’t you think his heart condition has changed what he can do?” I responded.

She shot back with rising irritation, “No. It’s all mental. He’s never been able to keep a job. Not since the beginning of our marriage 17 years ago. And he’s just trying to use his heart now to manipulate me to take care of him. But I won’t let him do that any more.”

Her view of him was as unshakeable as it was unforgiving. They separated soon after. She wound up starting her own small business and eventually marrying an older, affluent man who catered to her. He crashed on friends’ couches for a few weeks before moving into a homeless shelter. He only got back on his feet when he found another woman to take him in.

So what’s wrong with this picture? He was a lousy provider, in all likelihood, who’d made her feel victimized for nearly 17 years. She had every right to decline being re-victimized as his put-upon cardiac caregiver. Some would call that karmic justice.

But what happened here, in my mind, wasn’t simply an illustration of a bad relationship history undermining the willingness to make sacrifices on another’s behalf. She attributed malice to her husband’s intentions. At the same time, she trivialized his disabling heart functioning and resultant anxiety. It was as if she believed he was a malingerer and sociopath who willfully interpreted his chest pains as heart attack symptoms just to ride the ambulance and get out of a day’s work. To me, this was a distortion of the medical reality. Worse, it was a kind of character assassination that amounted to kicking a man when he was already down.

This happens in family caregiving in more subtle ways all of the time. Think of the emotionally distant adult daughter who avoids dealing with her father with dementia because he had always been mean to her when she was growing up. She perceives his yelling now as more of his old orneriness and not the agitated protests of a diseased mind. Or consider the wife of a lung cancer patient who blames him for ruining his life and hers because of his heavy smoking. Not every one of these family members will sever their ties with the care receiver when the time for caregiving arrives. Some will keep their distance and give little. Others will give lots but do it with an edge of resentment while assuming a bossy, morally superior stance.

This kind of blaming may feel right. But I think it’s misguided. Ill-used caregivers are entitled to walk away but do themselves no honor assuaging their guilt through being vindictive toward the newly vulnerable. That turns caregiving into a grudge match which compounds the suffering of the already disabled care receiver. It precludes any possible joy in the caregiving. It impedes real understanding of and empathy for the present predicament. We need to carefully distinguish the clinical symptoms of aging and illness from the past’s negative emotional legacy or risk conflating the two. Heart attacks needn’t prompt attacks on the heart.

 

  Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the co-author (with his wife, Julia L. Mayer, Psy.D.) of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family (Da Capo). 

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Spirituality And Collaborative Care: Part 2

Posted By Jonathan B. Wilson, Sunday, July 30, 2017

This is the second in a two-part series about spirituality and collaborative care. Click here for part 1.

Spiritual Collaboration in Family Centered Health Care

 

The role of spirituality in healthcare is a constantly evolving topic requiring dedicated time and attention from medical and mental healthcare providers alike.  As a whole, Americans are a highly religious people with 89% reported believing in God, 75% indicating that religion is “very important” or “fairly important” in their lives, and 73% saying they try hard to incorporate their religious beliefs into all areas of their lives.1, 2 Furthermore, researchers have demonstrated that religion and spirituality have significant effects on physical and mental health alike.3

 

Although many Behavioral Healthcare Providers (BHPs) and medical providers ascribe to the practice of incorporating religion and spirituality into their clinical practices, others may not do so as readily.  While interdisciplinary teams focus on patients’ spiritual concerns, those most commonly recognized for their specific training in this area are chaplains (also referred to in the literature as “hospital chaplains,” “healthcare chaplains,” and “non-denominational spiritual healers”).4 It is important to understand the services provided by chaplains in order to seek opportunities for collaboration.

 

Roles and Benefits of the Hospital Chaplain

Chaplains serve in a variety of contexts, often fulfilling numerous roles within those contexts.  Chaplains spend time with patients before surgeries and during the disclosure of diagnoses or therapeutic procedures by other healthcare professionals, and may assist in discharge planning and referrals to the faith community.Chaplains who serve within hospice settings may provide spiritual care to end-of-life patients and their families, addressing various religious and spiritual concerns that may surface during times of suffering, death, and loss.5-7

 

The benefits of the services provided by chaplains are noteworthy.  Various researchers have linked spiritual well-being to a better quality of life 8, and other health benefits including lower anxiety and depression.9, 10 Flannelly and colleagues11 even linked chaplaincy services to “significantly lower rates of hospital deaths compared to hospitals that did not provide chaplaincy services” (p. 4). 

 

Roles of Chaplains

As discussed in previous CFHA blog entries, behavioral and medical providers should be seeking opportunities to address spirituality with their patients.  Although some providers report discomfort or inadequacy regarding addressing spirituality concerns among their patients,6 various opportunities exist for collaboration with other healthcare providers and chaplains. 

 

Chaplains fulfill a variety of roles within the healthcare system.  They spend time with patients before medical procedures, assist in discharge planning, and provide referrals to the faith community.5 Chaplains may serve as a neutral professional when discussing diagnoses and treatment options with patients and their families at any point, but most often when addressing significant medical stressors and end-of-life care.5 By assisting patients and their families with coping during difficult experiences, chaplains fill an important role in the medical community.

 

Spiritual Collaboration

Chaplains are also able to support staff by providing counseling and spiritual support5 as well as increase provider diversity as members of interdisciplinary healthcare teams.  Chaplains who serve as members of interdisciplinary healthcare teams actually report higher satisfaction with communication among team members.12 Furthermore, chaplains may also serve as valuable resources when providing care to patients from multiple religious backgrounds.  By informing team members of common beliefs and healthcare practices of various religious groups, BHPs and chaplains alike can increase the quality of patient-provider relationships and establish excellent continuity of care.

 

While chaplains are important providers of spiritual care services to patients, they are not the only members of healthcare treatment teams that have the ability to do so.  Nurses, for instance, observe patients and their families in far greater frequency than chaplains or BHPs.  Nurses may very well become aware of the spiritual needs of patients long before a referral to a chaplain is sought.  One team of researchers noted that nurses, in fact, refer patients to chaplains more than any other medical discipline.13 In many cases, nurses serve as a link between BHPs, chaplains, attending physicians, and hospital administrators.

 

Although physicians, therapists, nurses, and clinical pastoral staff alike should receive training on the value of spiritual assessment,14 many providers do not actively implement these assessments into their practices.  It is important to continue to seek opportunities to meet the spiritual needs of patients, whether in prayer, spiritual support groups, collaborative scripture reading, ceremonial or individual worship rituals, or other services. 

 

In conclusion, as clinicians and researchers of family centered health care, it is crucial that we continue to look for new ways to meet the spiritual needs of our patients.  Collaboration with chaplains and other members of interdisciplinary treatment teams may provide further opportunities to do so.  Below are a few electronic resources specifically pertaining to chaplains that may be useful for those future collaboration:

 

  1. ACPE Research Network – http://acperesearch.net
  2. Australian Journal of Pastoral Care and Health - http://www.pastoraljournal.findaus.com/index.php
  3. Health and Social Care Chaplaincy Journal - https://journals.equinoxpub.com/index.php/HSCC
  4. Journal of Health Care Chaplaincy - http://www.tandf.co.uk/journals/WHCC
  5. Plainviews E-Newsletter - www.plainviews.org

 

 

References

1. Curlin FA, Lantos JD, Roach CJ, Sellergren SA, Chin MH. Religious characteristics of US physicians: a national survey. Journal of General Internal Medicine. 2005;20;629-634.

2. Gallup. Religion. http://www.gallup.com/poll/1690/religion.aspx. Accessed July 6, 2017.

3. Oh P, Kim SH. The effects of spiritual interventions in patients with cancer: a meta-analysis. Oncology Nursing Forum. 2014;41;E290-E301.

4. Bulling D, DeKraai M, Abdel-Monem T, et al. Confidentiality and mental health/chaplaincy collaboration. Military Psychology. 2013;25;557.

5. Dell ML. Religious professionals and institutions: untapped resources for clinical care. Child and Adolescent Psychiatric Clinics of North America. 2004;13;85-110.

6. Balboni TA, Vanderwerker LC, Block SD. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. Journal of Clinical Oncology. 2007;25;555-560.

7. Daaleman TP, Frey B. Prevalence and patterns of physician referral to clergy and pastoral care providers. Archives of Family Medicine. 1998;7;548-553.

8. Frost MH, Johnson ME, Atherton, PJ, et al. Spiritual well-being and quality of life of women with ovarian cancer and their spouses. Journal of Supportive Oncology. 2012;10;72-80.

9. Gaston-Johansson F, Haisfield-Wolfe ME, Reddick B, Goldstein N, Lawal TA. The relationships among coping strategies, religious coping, and spirituality in African American women with breast cancer receiving chemotherapy. Oncology Nursing Forum. 2013;40;120-131.

10. Rawdin B, Evans C, & Rabow MW. The relationships among hope, pain, psychological distress, and spiritual well-being in oncology outpatients. Journal of Palliative Medicine. 2013;16;167-172.

11. Flannelly KJ, Emanuel LL, Handzo GF, Galek K, Silton NR, Carlson M. A national study of chaplaincy services and end-of-life outcomes. BMC Palliative Care. 2012;11;10.

12. Clemm S, Jox RJ, Borasio GD, Roser T. The role of chaplains in end-of-life decision making: Results of a pilot survey. Palliative and Supportive Care. 2015;13;45-51.

13. Vanderwerker LC, Flannelly, KJ, Galek K, et al. What do chaplains really do? III. referrals in the New York chaplaincy study. Journal of Health Care Chaplaincy. 2008;14;57-73.

14. Joint Commission on the Accreditation of Healthcare Organizations. Evaluating your spiritual assessment process. 2005.   Accessed here July 10, 2017.

 

 

Jonathan B. Wilson, PhD, is an Assistant Professor at Oklahoma Baptist University in the Department of Behavioral and Social Sciences.  He co-founded Oklahoma’s first advanced clinical training certificate in Medical Family Therapy, and has various publications and presentations in Medical Family Therapy and Integrated Behavioral Health Care.  He has held leadership positions for the Oklahoma Association for Marriage and Family Therapy as well.  His research interests include intimate partner violence, qualitative research methods, and sexuality in relationships. 

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Spirituality and Collaborative Care: Part 1

Posted By Stephanie Trudeau, Tuesday, July 11, 2017

Reattaching the “S”

How often do you hear the following phrases either clinically, at the holiday dinner table, or streaming across your social media platform: “We are asking for your prayers”; “We know he will remain strong and keep fighting”; “God is good and will grant us a miracle”; “I am granted the strength everyday to get through this”; “If I stay the path, I know I will get better”; and “It’s in God’s hands now”.

 

These colloquial expressions do more than fill the empty space in conversations with people who are suffering. They constitute the unseen, untouchable, sometimes-mysterious part of illness and disease – a belief in something bigger than themselves.

 

Patients want to be asked about their spirituality, in fact, upwards of 94% of them do.1  How often are they asked? Not often enough. Ten percent of physician’s and 56% of mental health professionals report asking patients about their spirituality or religious practices.2, 3

 

For decades now in our clinical and academic work, we have been making strides to “reattach the head to the body”. In this blog post I am attempting to push you a little further: “reattach the S to the BPS-S model”. Part 1 of this 2 part series will offer a quick primer (i.e., background information, research on health outcomes), and a starter guide (i.e., assessments and measures to be used in practice and research). Part 2 will follow up by focusing on collaborative practices with spiritual providers within the healthcare system (e.g., chaplains).

 

 Quick Primer

From BioMed to Biopsychosocial-Spiritual

Prior to 1977, illness was generally thought to be influenced by deviations in biological norms. Thus, clinicians relied primarily on the Biomedical Model. Engel4 developed the Biopsychosocial Model (BPS) to expand the picture of illness beyond the biological to include psychological and social dimensions. Wright, Watson and Bell5 later expanded BPS to incorporate Spirituality as an equally important influencer in health and illness. The outcome was the inception of the model that clinicians, academics, and researchers ascribe to as the primary epistemology in the practice of family centered health care - the Biopsychosocial-Spiritual Model (BPS-S).

 

Spirituality/Religion: and/or & both/and

Due to space restrictions, this post will not fully go into the differences and similarities of spirituality and religion. For a comprehensive review of how these terms are used and researched, refer to Koening.6 Research uses the terms spirituality and religion interchangeably so much so, that there is contamination and confounding constructs in the measures. Given the overlap, religion and spirituality will be used interchangeably and will be identified as “Spirituality” here on out.

 

Spirituality: Physical Health and Health Behaviors

Research has shown that those who self report higher levels of spirituality have healthier diets, healthier weight, and less risky sexual behaviors. Indirect associations between spirituality and physical health include positive outcomes for the following conditions: coronary heart disease, hypertension, stroke, dementia, immune function, cancer, pain and somatic symptoms, and mortality.  How spirituality influences physical health has generally been researched via three pathways, through improved psychological health, increased social involvement, and improved health behaviors.

 

Spirituality: Mental Health

Levels of spirituality and mental health outcomes have been shown to have a significant inverse relationship.  Spirituality has been shown to directly or indirectly influence various mental health pathways such as: use in coping with adversity, positive emotions, well-being/happiness, hope, optimism, meaning and purpose, sense of control, depression, anxiety, suicide, and substance abuse. Overall, spirituality influences mental health through many different mechanisms and has a substantial evidence base supporting its importance. Researchers attribute these impacts via the following mechanisms: spirituality provides resources for coping with stressful events, it provides guidelines for how to live life such as doctrines, and it promotes an altruistic, compassionate stance in life and encourages contact with community.         

 

Starter Guide

You Can’t Know If You Don’t Ask

Not too many moons ago I stumbled over how to assess spirituality in the clinical setting. Even with the presence of prompting question on the diagnostic assessment, I still threw out:  “you’re religious right?” nodding my head in hopes we wouldn’t have to “go there”.  It wasn’t until I was steeped in a family medicine residency program serving a high-risk population (e.g., multiple health disparities, trauma histories) that I made an intentional move to ask more purposeful questions regarding the role of religion and spirituality in my patient’s illness and suffering narratives.

 

Far too many of my patients would say things such as “if I pray enough God will cure my diabetes” and “I knew I was destined to get this disease, I was not a good person in my early life”.  It dawned on me; no matter how many BPS interventions we could produce for these patients, their deeply seeded beliefs - intertwined with spirituality - could be impeding any actual healing.  And, we would never know, if we didn’t ask.

 

First things first, we have to ask ourselves why we are not asking. We need to dive in and assess our own biases.  What’s keeping us from asking?  It is our own comfortability, our own lack of knowledge, or is it an unfamiliarity in resources and referral pathways? Second, we must recognize it is our requirement to ask. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO)7 sustain that “Physicians, therapists, nurses, and clinical pastoral staff should receive training on the value of spiritual assessment and the tools that should be used to assess a patient’s spirituality” (p. 6). 

 

JCAHO7 “requires organizations to include a spiritual assessment as part of the overall assessment of a patient to determine how the patient’s spiritual outlook can affect his or her care, treatment, and services” (p. 6).  It is the clinician who is responsible for doing these initial screeners. If spiritual needs are discovered, a referral to pastoral care is made to further address these needs (stay tuned for Part 2 of this blog series for more information on these transactions).  Lastly, a gentle reminder that any assessment of spirituality should be patient and family-centered and patient driven. Coercion is a no-no, and the patient should feel in control of the pace and depth they reveal information pertaining to spirituality.  

 

In conclusion, the impacts of spirituality on health outcomes are becoming more apparent. As clinicians and researchers looking to expand upon the principles of family centered health care, it is essential that we make a purposeful effort to reattach the “S” to the “BPS” model. Below are a list of resources and measures that may be used to assess and measure spirituality.

 

Measures/Instruments/Questionnaires

FICA Spiritual History Tool

HOPE Approach so Spiritual Assessment 

The Open Invite Mnemonic Assessment (page 3)

Duke University Religion Index (DUREL) 

Brief RCOPE 

Spiritual Assessment Inventory (SAI) 

Brief Multidimensional Measure of Religiousness and Spirituality (BMMRS)

         

 References

1.  Williams JA, Meltzer D, Arora V, Chung G, Curlin FA. Attention to inpatients’ religious and spiritual concerns: predictors and association with patient satisfaction. Journal of General Internal Medicine. 2011;26;1265-1271.

2. Curlin FA, Chin MH, Sellergren SA, Roach CJ, Lantos JD. The association of physicians’ religious characteristics with their attitudes and self-reported behaviors regarding religion and spirituality in the clinical encounter. Medical Care. 2006;44;5;446-453.

3.  Curlin FA, Lawrence RE, Odell S. Religion, spirituality, and medicine: psychiatrists’ and other physicians’ differing observations, interpretations, and clinical approaches. American Journal of Psychiatry. 2007;164;12;1825-1831.

4. Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196;4286;129-136.

5. Wright LM, Watson WL, Bell JM. Beliefs: The Heart of Healing in Families and Illness. New York, NY: Basic Books; 1996.

6.  Koenig HG, George LK, & Titus P. Religion, spirituality, and health in medically ill hospitalized older patients. Journal of the American Geriatrics Society.  2004;52;4;554-562.

7.  Joint Commission on the Accreditation of Healthcare Organizations. Evaluating your spiritual assessment process. 2005. http://www.professionalchaplains.org/files/resources/reading_room/ evaluating_your_spiritual_assessment_process.pdf.  Accessed July 10, 2017.

Stephanie Trudeau, M.S., LAMFT, is a doctoral candidate at the University of Minnesota in the Department of Family Social Science's Couple and Family Therapy program. Her clinical and research interests include family medicine, family coping with chronic illness and end of life, provider well-being, and integrated behavioral healthcare model design, development, and evaluation. She credits her two little monkeys for being the most influential teachers of life, love, play, and well-being.

 

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A Child’s Hospitalization Is A Family Affair – And Why Caring For Families Is Good For A Hospital’s Health

Posted By Nicole Rubin, Deron Ferguson, Linda Franck, Thursday, June 22, 2017

This post was originally published on 29 July 2015. Click here for the original post.                                            

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.

 

References

 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.

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My Vexing/Gratifying 7 Years of Caregiving

Posted By Barry J. Jacobs, Wednesday, May 31, 2017

This piece is a reprint originally published on 15 May 2017. Please click here for the original post. Reprinted with permission.

 

On April 26, 2017, while lying motionless in her nursing home bed with closed eyelids and a gaping mouth, my 86-year-old mother took two last short breaths before peacefully going still. Her death from complications of dementia and kidney failure brought to a close a nearly 7-year, sometimes rancorous period of family caregiving after my wife and I moved her up from Florida to live near us. We then gradually took over every aspect of her life.

 

That wasn’t our intention, of course. We tried to preserve her independence for as long as we could. But as she became confused about her pills, fell more often, and wandered at times, we responded by commandeering her pill box, making her use a walker, and hiring legions of home health aides. With nearly every change, she fought us. That made a sad, deteriorating situation more difficult. Living in a nursing home during her last year-and-a-half gave her the supports she needed and allowed us to finally stop battling with her.

 

As a clinical psychologist specializing in helping families struggling with illness, I thought I had some idea of what I was getting into. But, looking back, I did only partially. Real-life caregiving for my mom was much more personal and perturbing, complex and challenging, gratifying and vexing than my clinical work or academic reading could have prepared me for. Like all family caregivers, I suffered growing pains but learned a great deal. Here are some of the lessons I gleaned along the way:

 

There’s no magic other than the caregiver’s creativity: There are dozens of helpful caregiver websites and books offering information on diseases, treatments, healthcare systems; insurance and financial management; stress, dread and joy. (Hey, I’ve written many online articles and two of the books.) But because each caregiving family’s situation is so unique in its history, dynamics, and resources, no self-help blueprint can address each pressing crisis. Ultimately, it’s the primary caregiver who has to trust herself to devise solutions for her family’s particular cast of quirky characters and their problems. As my mother’s condition worsened and my own anxiety-level rose, I think I was too reliant on the pat answers that a nurse or case manager might suggest. I needed to be bolder and more decisive. She was my mother. This was our family.

 

Professionals came through—except when they didn’t: Perhaps because I’ve worked in various medical settings for nearly 30 years and teach communication skills to family medicine residents, I had high expectations for my professional colleagues. Mostly, they were wonderful—empathetic, knowledgeable, responsive. My mother’s internist—like her, a Jewish kid from the Bronx—was a warm balm to her pain and an effective advocate for me. But there were glaring and infuriating examples of professionals failing at even the most basic courtesies for caregivers. To the nurses who talked down to me as if I didn’t know anything about my mother’s condition, I say that you need to assess not just the patient but the level of understanding and ability of her caregivers. To the emergency room physician who failed to call me for many hours to inform me that my mother had been found down in the street and brought to the hospital by ambulance, I say that you do patients a disservice by marginalizing the family members who have pertinent information and a large stake in the medical outcome. To the home health agency administrator who lied to me on multiple occasions about sending a new home health aide for my mother, I say that I only wish I’d fired your agency sooner.

 

Anger is an unfortunate way to avoid sadness: Given that my mother and I had an ingrained propensity for arguing with one another, it was unpleasant but too easy for us to lock horns over whether, say, she needed a home health aide on Saturdays or required financial supervision. The big picture of her decline was too sad and frightening to talk about so we avoided it by getting angry over caregiving’s small details. The few instances in the nursing home when we were sad together about her progressing dementia made me feel closer to her than I did at any other time. In retrospect, I wish we’d communed more and fought less.

 

Adversity creates gratitude: The caregiving went on longer and was harder than I expected. But I have few regrets about having been my mother’s primary caregiver. I learned more about her stubbornly independent character as she faced unremitting loss. I learned something about my own character to just as stubbornly work to ensure her safety and comfort. I’m grateful to my wife for sharing the caregiving with me and for our children for supporting us. I’m grateful to my brother and cousins for pitching in. It was a test for all of us as a family. I believe we passed. No victory lap here; my mother’s dead. But our family endures as one that values caring for one another.

 

  Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the co-author (with his wife, Julia L. Mayer, Psy.D.) of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family (Da Capo).

 

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Systemic Interventions for Families of Children with Autism Spectrum Disorder

Posted By Katy Oberle, Thursday, May 11, 2017

Approximately 1 in every 68 children is diagnosed with autism spectrum disorder (ASD). Although myriad diagnostic- and treatment-related resources are available for these children, few resources exist to help their families accept and adjust to the diagnosis, deal with various treatment challenges, and cope with the impact of ASD on the family.

 

Parent training can be very beneficial in decreasing problem behaviors in children with ASD. However, because it generally does not address family functioning, additional family-based work may be needed and can be done simultaneously with other ASD interventions. Sometimes family issues need to be addressed before parent training so that parents can have the emotional resources necessary to successfully implement behavioral interventions.

 

In my position at a community-based, hospital-run multidisciplinary autism and child development center, I assess children at-risk for ASD and other developmental disabilities, and I provide psychotherapy services for their families. Most parents are relieved to learn about the availability of family-based support since they often experience feelings of isolation, depression, and anxiety. This support offers a space to discuss family issues that are often pushed to the back burner and helps mitigate some of the stress of caring for children with ASD.

 

While engaged with a family, I collaborate with the other providers involved in the patient’s care. Whenever possible, I co-facilitate family sessions with the patient’s individual therapist from our autism center next door. Oftentimes this clinician has a better sense than I do of the patient’s behavioral and emotional patterns and can, when needed, help deescalate the patient during a session. Through our collaboration, the therapist gathers valuable information about family interactions to inform his/her own work with the patient, and the patient benefits from having an ally in the room.

 

This was the case for Derrick, a teenager with ADHD and ASD. Derrick struggled with emotional regulation, anger, and aggression, primarily at home. Derrick’s individual therapist was often present in my family sessions. As session progressed with Derrick, his adoptive parents, and his younger brother, the parents realized that as co-parenting was improving, their martial relationship was decompensating.  It became important to balance marital and co-parenting roles so the couple could effectively address Derrick’s behaviors while taking good care of their marriage. During couples sessions, Derrick’s parents processed their romantic relationship and families of origin. They became more mindful of how their patterns of interaction impacted each other and how they were affecting the children. In subsequent couple and family sessions I coached parents to engage in mindful listening and communication with each other and with their sons.

 

It was determined that trauma was a factor at play in the palpable tension and angry exchanges in the relationship between Derrick and his father, Tom; both had experienced abuse in their childhoods. During one session, Derrick explained that when he disclosed to Tom his suicidal feelings the day before, Tom responded in a dismissive manner which angered Derrick to the point of becoming physical with Tom. When I asked Derrick more about this, Derrick confirmed that Tom’s response triggered a memory from Derrick’s time in foster care in which he had felt vulnerable and dismissed. His aggression towards Tom, although unhealthy, was self-protective.

 

With my coaching, Tom informed Derrick that when he heard Derrick’s suicidal talk, a memory from his own traumatic past was triggered, and he just wanted to “shut it down.” I praised the two for their honesty and resilience, and I imparted to them that being trauma survivors has the potential to deepen their bond. Since then, Tom has been more self-aware and has been working on responding mindfully rather than reacting, especially regarding Derrick. Derrick continues to struggle with emotional regulation, but the foundation for a more positive relationship with his family has been laid.

 

Family-based work adds important value to any team that participates in the diagnosis or treatment of children with ASD or other developmental disabilities. Child behavior in ASD and family functioning are interconnected, and treating them together can have a synergistic effect. As Doherty et al (1994) states, “all therapeutic issues involve complex systems dynamics at biological, psychological, interpersonal, institutional, and community levels” (p. 34). When we as providers appreciate this phenomenon and create interventions designed to address various systemic dynamics in the lives of our patients, we are truly living into our value of integrated care. 

 

References/ Recommended reading:

Bearss, K., Burrell, T.L., Stewart, L., & Scahill, L. (2015). Parent training in autism spectrum disorder: What’s in a name? Clinical Child and Family Psychology Review, 18, 170-182.

Cridland, E.K., Jones, S.C., Magee, C.A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213-222.

Ramisch, J. (2012). Marriage and family therapists working with couples who have children with autism. Journal of Marital and Family Therapy, 38(2), 306-316.

Neely, J, Amatea, E.S., Echevarria-Doan, S., & Tannen, T. (2011). Working with families living with autism: potential contributions of marriage and family therapists. Journal of Marital and Family Thearpy, 38, 1, 211-226.

Patterson, S.Y., Smith, V., & Mirenda, P. (2011). A systematic review of training programs for parents of children with autism spectrum disorders: Single subject contributions. Autism, 16(5), 498-522.

Hock, R.M., Timm, T.M., & Ramisch, J.L. (2012). Parenting children with autism spectrum disorder: a crucible for couple relationships. Child and Family Social Work, 17, 406-415.

Garcia-Lopez, C., Sarria, E., Pozo, P., & Recio, P. (2016). Supportive dyadic coping and psychological adaptation in couples parenting children with autism spectrum disorder: the role of relationship satisfaction. Journal of Autism and Developmental Disorders, 46(11), 3434-3447

Hayes, S. A. & Watson, S. L. (2013). The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642.

Gau, S. S., Chou, M. C., Chiang, H. L., Lee, J. C., Wong. C. C., Chou, W. J. et al (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6, 253-270. 

 

 

Katy Oberle, MS, IMFT is a family therapist at the Child Development Center (CDC) of Nationwide Children's Hospital. She conducts diagnostic assessments for children and teens with developmental and behavioral health concerns, and she provides systemically-focused therapy services to CDC clients and their families. She also serves as the treasurer of the Ohio Association for Marriage and Family Therapy. Her clinical interests include couple relationship enhancement for parents of children with special needs, and systemically-geared mindfulness-based interventions delivered in the context of various healthcare settings. 

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Playing in Primary Care

Posted By David Haralson, Tuesday, April 25, 2017


Children and adolescents are a common sight in primary care, making up approximately 16% of all doctor’s visits (CDC, 2012a).  Of those visits, approximately half were problem-focused visits (i.e., child comes in for an earache) and half were routine child checkups (CDC, 2012b).  It is important that doctors, behavioral health specialists, and other healthcare providers are competent in relating to and communicating with children.  One of the most effective ways to communicate and relate with children is through the use of play.  Play can be defined as any fun or enjoyable activity that allows us to creatively express who we are (Association for Play Therapy, 2016) and is one of the primary means by which young children communicate (Landreth, 2012).  

 

Why Play is Important in Primary Care Settings

Although play is as essential to our well-being as love and work are, it is often disregarded in primary care settings.  This is understandable as play is generally seen as a time-consuming and non-directive process, two characteristics that seem almost incompatible to the fast-paced, provider-directed culture of primary care.  As a medical family therapist who has seen first-hand the healing power of play, I have worked to figure out simple, yet creative ways that we can more effectively use play while working with children in primary care settings.   Here are a couple of suggestions for behavioral health specialists or other healthcare providers who wish to use play in primary care.

 

Gingerbread Person

Supplies

Paper with a blank gingerbread person
Clipboard
Small box of crayons


Instructions:

1. Tell the child that the gingerbread person represents their body.
2. Ask the child to choose their favorite crayon.
3. Ask them to color or draw where in their body they feel pain or discomfort. 
4. Ask them if they want to use another crayon or draw anything else on their gingerbread.
5. Ask them if they would like to draw what is going to make them feel better on the margins of their gingerbread person
6. Ask follow up questions on their drawing like, “Can you tell me what you drew? What is that you drew in the margins?” “I notice a lot of red. If you don’t mind me asking, did you choose red for a reason?”
7. Follow-up with parents if you have any additional questions.

 

Doctor's Toy Kit


Supplies:

Doctor’s toy kit
Smooth surface (table, chair, etc.)


Instructions:

1. Hold the bag up and tell the child that in the bag there are a few things that the doctor might use to make sure their body is feeling OK. 
2. Spread the toys out on a smooth surface and ask the child if he or she would like to play. 
3. Observe them play and reflect what you see: “You are using the stethoscope on mommy.”
4. After a few minutes, ask the child if it would be OK if you demonstrated what some of these toys are used for.
5. Demonstrate how the doctor might use these toys with the child.  Observe and reflect on their reactions.
6. Ask them if they have any questions and let the family know the doctor will be in shortly.

 

Play Dough


Supplies

Mini-play dough 

Instructions:

1. Ask the child to create what they believe is making them feel yucky or have pain.
2. Explore with the child what item they chose to create and why they chose that item. 
3. Let them know that part of the doctor’s job is to help them get rid of the pain or yuckiness. In order to do this, though, sometimes this means having to do scary things like having a look in their mouth, their ears, or having a shot.
4. Let the child know that if they start to feel scared or stressed, they can smash or squeeze this play dough in any way they want to. 

 

 Health Book


Supplies:

Your favorite book on nutrition, exercise, or some other topic

Instructions:

1. Show the family that you have a book that you like to read to each child that comes in for their first visit with their doctor.
2. Ask the parents to look through the book to make sure they agree with everything presented.
3. Read the book out loud to the parent and child.
4. Ask the child follow-up questions about what they learned and how they feel they are doing with keeping their body healthy.
5. Set a goal with the family about eating healthier, exercising more, etc.

 

 Drawing with Teenagers



Supplies:

Plain white piece of paper
Clipboard
Pencils or color pencils


Instructions:

1. Use traditional screening tools for family and individual struggles (i.e., family conflict, depression, etc.)
2. After discussing their results, tell them that many people feel more comfortable drawing how they feel or what they are struggling with then talking about it.  
3. Ask them to draw the problem, the pain, or the struggle that has brought them into the clinic that day.
4. Validate and listen to their concerns. 
5. Ask them what has helped them overcome this pain, problem, or struggle.
6. If willing, set a goal with them based on their answers from the previous step.

 

 Bonus Activity*


There are also many cell phone apps that can be used for self-care or for the management of difficult thoughts or emotions. Some of my favorites to use with patients are Breathe2Relax, PTSD Coach, or Bliss.  If possible, download the app with the patient and practice one or two of the exercises together.

Tying it all Together

These strategies are, by no means, exhaustive. The strategies are endless! These are only a few, simple ways that we, as healthcare providers, could more fully use play in primary care. Remember, it is important that we do our best to learn the language of those whom we serve.  And play is one of the primary languages of children! 

 

 
David Haralson is a Ph.D. student in Medical Family Therapy at East Carolina University. For nearly four years he has worked as a bi-lingual medical family therapist in a variety of primary care settings. In particular, he enjoys helping families who struggle with substance misuse or other life-altering health conditions (such as cancer or MS). He often uses play therapy in his day-to-day work with children, adults, and their families. He is currently on the path to becoming a licensed marriage and family therapist and AAMFT approved supervisor.   

 

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Pain and Acceptance at the End of Caregivers’ Hopes

Posted By Barry J. Jacobs, Wednesday, March 15, 2017

 

This piece originally appeared on the Huffington Post. Posted here with permission.

“You are treating her like she’s a piece of meat,” Tony was shouting angrily at me. I hadn’t the power to change the care his 62-year-old wife was receiving in my hospital’s intensive care unit—for the past two years, I had been their psychologist, not nephrologist—but, for the moment, I became the embodiment of all Medical Authority. “She just lies there, unconscious and horribly swollen. You don’t do anything for her except stick her with more needles.” The look on his face then shifted slightly from accusatory to imploring. But I couldn’t save her.

 

His wife, Elena, had been bedbound in their tiny apartment in suburban Philadelphia for at least five years because of chronic, severe back and knee pain. She’d become confined there as the result of a series of personal and medical missteps—or, put another way, lack of steps. Once she’d entered middle age and her girth thickened, her joints had started aching because of the increased weight they supported and she consequently walked less. As she’d walked less and took to her “sick” bed more often, she burned fewer calories but never adjusted her diet and consequently gained more and more weight. Taking handfuls of pain pills every day didn’t relieve her joints and propel her off the mattress; instead, they only sedated her into a supine stupor in front of the TV. And the long-term narcotic use gradually took its toll: Her kidneys and other organ systems were now shutting down.

 

Tony was her devoted enabler. He’d waited on her slavishly, bringing her favorite foods, sitting bedside with her every day for hours to watch TV and listen to her steady complaints. He owed her, he felt, because she had stuck with him through his wild drinking years until he finally sobered up. He’d paid her back by sticking with her through her retreat from the world and now he was still sticking with her in the hospital, like he thought he was supposed to do. He would plead with the doctors to make her whole. He would utter lengthy beseeching prayers during sleepless nights in the armchair in Elena’s ICU room. But he could see that none of it was working. He was frightened for her life. He was afraid he was letting her down.

 

My job, it seemed to me, was not to try to persuade her medical specialists to make hail-Mary efforts for Tony’s sake. Neither dialysis nor multiple meds were working. My job was to convince him that Elena’s condition had taken a discernible turn. Family psychiatrist John Rolland of the Chicago Center for Family Health has written compellingly about the phases of illness—acute, chronic, terminal—and how hard it is for patients and families to switch their expectations and actions from one phase to another. We all believe at first that our ailments have a cure until some professional tells us that our condition is chronic and that we will have to learn to live with managing the symptoms. We are all lulled into believing that life with that chronic condition will go on and on until the end hits us shockingly like a sucker punch. This is the hard stop on hope.

 

“Tony, I’m worried that Elena won’t make it,” I said quietly. He stiffened and said, “No,” but the word sounded more resigned than forceful as if he knew that protesting wouldn’t change anything. We’d worked together for two years and he trusted me. By stating the inevitable first, I was giving him permission to begin thinking about the possibility of her death without feeling guilty. “You’ve been a very good husband to her for a long time,” I went on. And then to suggest a way he could continue to be good to her, I said, “I think it’s time to talk with her doctors about considering hospice.”

 

“Yeah, well, we’ll see,” he said gruffly. Over the next few days he continued to push her physicians to try new interventions as if defying what I’d said. But our short exchange had a started a process. He didn’t want to accept that she was in the terminal phase but he now knew it. When the doctors themselves approached him with the suggestion of taking her off of life supports, he acquiesced. She died a day later.

 

In our initial meetings in the months afterwards, he was still angry at her doctors and at what he saw as an uncaring world. But time passed and anger abated and he began to allow himself to feel relieved of the burden of caring for her without also feeling guilt for getting rid of her. “You were a good husband,” I kept telling him. With time, he came to see that that didn’t mean preserving her life, but accompanying her through its vicissitudes, termination included.



Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the co-author (with his wife, Julia L. Mayer, Psy.D.) of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family (Da Capo).

 

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