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No Nos Entienden: Cultural Themes for Latina/o Populations in an Integrated Health Clinic

Posted By Karla V. Caballero, Wednesday, November 15, 2017

“I think that when parents realize that using words like shame and guilt and promoting those ideas. I think they realize in doing that it affects the child even more…so at some point you start noticing a shift from blaming talk or problem saturated talk to more positive uplifting supportive talk. I think that change in view has a lot to do with reclaiming of self”1 


Not too long ago, I completed a year of training as a doctoral student therapist at an integrated specialty clinic in San Antonio, Texas. This clinic provides physical and medical evaluations for children and teens that have experienced some form of sexual abuse. The integrated team includes therapists, social workers, medical doctors and nurse practitioners. As standard practice, the team offers opportunities for acute or crisis therapy services the same day of the initial visit as well as scheduled appointments. 

 

The population I worked with was primarily Latina/o and consisted of bilingual and monolingual Spanish speakers. While there, I assisted the clinic in moving towards more culturally appropriate warm hand offs, as well as considerations for working with this population in the context of trauma. This reflection will highlight my work with a Latina/o family whose 11 year old son, dubbed Niño, had experienced sexual maltreatment by a male family member. 


The mother and son were reluctant to trust the assistance of the medical profession; they were afraid to be judged and looked down on. Needless to say, they were referred to me for assistance in treatment participation. Cultural humility and competence are buzz words in the field of psychology, but what is not often discussed are the points of pride and shame that cultures seem to adhere to, especially in regards to trauma. In terms of shame, families at the clinic often expressed feelings of being sucio or dirty, they sought their child’s reclamation of innocence and an urge to maintain family honor.  

 

At 11 years old, Niño understood what had happened to him was awful and he knew he was safe now that everyone knew. That was not his concern. He was troubled that his family felt ashamed of him and of the event due to their religion. Religion coincides with purity, his mother explained, and it is an important aspect of their culture. Additionally, he felt dirty and would bathe obsessively since the incident, almost 3 months. This was another reason he was encouraged to see me. 


His mother shared that she felt as though she lost her son, he was no longer innocent; he had been defiled and was fearful that her happy child was gone. She doubted that such a clinical setting would understand these aspects and was hesitant to return for follow up appointments and treatment. “No nos entienden,” they don’t understand us. We decided that since Niño would return a few more times for medical follow-ups, we needed to address these themes as a team; the doctors, nurses, social workers and therapists.

 

The family was concerned that the doctors and nurses would see them just as they saw themselves: broken. Together we met with the team and discussed the themes and concerns that had come up and how we could clarify the treatment plan so that the family felt comfortable in returning. The team reflected that their aim was to build up patients with follow up and recommendations so that patients can return to a stable life. The team was excited to adapt their approach with cultural considerations by checking in with the family each step of the way to not only heal the body, but to treat the self too. 


The family was then asked what they needed from the team. Nino’s mom simply stated, “queremos ser puros otra vez y escuchados,” to be pure again, to be listened to. This novel idea, of listening to the story first, of considering those feelings of being dirty, shame, guilt and a loss of innocence may be more important than the physical. Finally, to acknowledge that honor is crucial to Latina/o families. Since then, the site has adapted their initial intake and assessment interviews to include discussions of the emotional changes these families may have incurred as a result of the abuse. This is owed all to the bravery of a little boy and his mother, to be heard first above all else.

References

Baldwin, M., & Caballero, K. (August 2017). Reflections of a therapist: Informing psychotherapy with Latino families of sexually abused children. Accepted for poster presentation at the Minority Fellowship Program at the 125th Annual Convention of the American Psychological Association (APA), The Society of Counseling Psychology Division 17 in Washington, DC

 

Karla Caballero, M.S., LMFT is a counseling psychology doctoral student from Our Lady of the Lake University in San Antonio, Texas. She also earned her Masters of Science in Counseling Psychology from the same institution.  

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Reflections on the Passing of Salvador Minuchin: 1921-2017

Posted By Randall Reitz, Wednesday, November 1, 2017

I was saddened to hear that one of my early professional heroes died yesterday.  Salvador Minuchin passed at the age of 96 after a long and prolific career as a founder of marriage and family therapy.

While I didn’t know Minuchin like some of the first generation of CFHA leaders, he did have a deep impact on my career and my decision to embrace medical family therapy as my preferred lens.  His conceptualizations of family structure were elegant and imminently applicable in family work.  I come from a structurally complex family that was impacted by childhood diabetes, so I eagerly consumed all of his seminal works on “psychosomatic families” and “brittle diabetics”. 


 It is definitely fair to say that some of his ideas have started to show their age, and his language reflected an earlier and less other-aware era.  And, in the hustle and bustle of integrated behavioral health, we’re often not afforded time for structural interventions with families. 

 

And yet, in this regard, our integrated models are also starting to show their age.  We are now acutely aware of the impact of social determinants of health and adverse childhood experiences.  Families-of-origin are the near universal first exposure to both of these health stressors.  We recognize relationships as the root cause of the symptoms that we attempt to manage in on-the-fly encounters. We live with the dreadful awareness that our referrals to other systems often fall through the cracks.  With the young and the aging, our societies benefit from the dedication of time, love, and resources that come from families and other loved ones.  Yet, behavioral health consultants in highly restricted settings often feel hobbled in their ability to fully engage the strengths of these systemic supports.

 

I only had the chance to meet Minuchin once. He presented at the Erickson Foundation’s Evolution of Psychotherapy conference in 2000.  I drove from Colorado to California to see him during my doctoral internship in Grand Junction.  He wore a baseball cap on-stage because his aging eyes couldn’t tolerate the spotlight. I found him to be humble and self-reflective.  He advocated for the continued relevance of his theories while also tipping his hat to the post-modern critiques that were de rigueur at the time.  He was gracious in tolerating a picture with me and a line of others after his remarks.

 

At last month’s CFHA conference I had a similar fanboy experience while sharing dinner with Susan McDaniel, Larry Mauksch, and Barry Jacobs.  Presciently, they shared their own experiences with and affection for Minuchin. I count myself as blessed to be part of our movement while it is still new enough and intimate enough to rub shoulders with our visionary founders.  It is our challenge to bring forward the legacy of their best ideas, while modernizing them to align with the ever-changing contexts in which we implement them.

Randall Reitz, PhD, LMFT, is director of behavioral sciences at St. Mary's Family Medicine Residency Program in Grand Junction, CO. 

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Improving Health Care Outcomes: It’s About Relationships!

Posted By Rick Ybarra, Tuesday, October 31, 2017

An important April 24th article published by the Commonwealth Fund is a timely and must-read article. It highlights the challenges of engaging, treating, and support persons with multiple, complex, chronic health conditions (defined as three or more health conditions, often including mental health). It supports the notion the Hogg Foundation believes in: integrated health care, team-based care, care coordination, and relationships: treating people with respect, dignity and worth.

Key takeaways:

·      Persons with multiple, complex, chronic health conditions (approximately 12 million persons) are among the 5 percent of patients who account for about 50 percent of health care spending

·      Collectively, these individuals account for more than $120 billion in health care spending annually

·      Also possess a functional limitation that interferes with basic activities of daily living

·      Persons with multiple, complex, chronic health conditions are impacted by social determinants of health, as well as socio, economic and cultural factors

·      A Commonwealth Fund survey of high-need patients found that 44 percent reported delaying care in the past year because of an access problem such as lack of transportation to the doctor’s office, limited office hours, or an inability to get an appointment quickly enough, often leading to more and more expensive care

That said, for all the money spent on multiple, complex, chronic health conditions, it is presumed that this particular patient population is not always receiving the best care or right type of care, where they need it, when they need it, and how they need it. One of the major dilemmas of health care.

Despite the challenges noted above, there are exciting and promising efforts to improve care being implemented, tested and evaluated across the nation. Collaborative, team-based initiatives with care managers such as social workers or nurses working within a medical home type setting show promise.

Many of these test programs have taken a different approach than traditional office care, emphasizing relationship - building and focusing more on meeting patients’ nonmedical needs outside the doctor’s office. Most of these programs pair patients with a dedicated care coordinator, who may or may not have extensive medical training, but who are knowledgeable and understand the complexities of the health care system well enough to help patients successfully navigate it. Importantly, these care coordinators are also strong and effective advocates on behalf of patients for housing, mental health, legal, nutritional, transportation, and other nonphysical/nonmedical needs.

The Commonwealth Fund article highlights innovative programs, patients, and care coordinators in Los Angeles, Chicago, and Minneapolis, just a small sampling of programs involved these kinds of efforts.

In these three case examples, they have several commonalities: improved health outcomes (people get better), increased engagement (people attend clinic appointments; learn about self-management of their conditions), and not requiring less ER visits and hospitalizations (you could argue less cost). Lastly, all examples point to the value and benefit of a care coordinator, who provide frequent “touch points” that do not occur in the clinic or in the health care encounter.

There is increased recognition that non-medical factors that impacts health conditions, such as coping with the day-to-day reality of living with serious, multiple, chronic illnesses, transportation challenges, a stable place to live, knowing where the next meal is coming from, affording the copay for medicines versus buying food, and the list goes on. Largely non-medical issues.

The article concludes that in the same way that medicine had to “learn” to assess and treat patients’ medical and mental health conditions, today’s real challenge is learning to assess and treat patients’ non-medical needs. Integrated health care, team-based care, and care managers, such as the examples illustrated in this Commonwealth article, may be the bridge that connects and strengthens the relationship between the patient and provider.

At the end of the day, it’s about relationship – building. Relationship between provider and patient, relationship between team members, relationship between care manager and patient, and relationships between the patient and their family/caregivers and community. Relationship – building. Not taught in medical schools and in academic graduate training programs. And most importantly, relationship – building does not come in pill form.

 


Rick Ybarra serves as program officer for the Hogg Foundation for Mental Health and leads the foundation’s Integrated Health Care Initiative. With over 25 years of clinical and administrative experience in both private and public sector behavioral health, Ybarra’s policy and program experience extends to county, state and national efforts promoting reforms, public policies and clinical practice to improve effective service delivery and health equity for racial/ethnic populations. Ybarra joined the foundation in 2007.



 

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Finding Family at the 2017 CFHA Annual Conference

Posted By Matthew P. Martin, Tuesday, October 3, 2017

The Families and Health Blog welcomes you to the 2017 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.

 

Is There Gold at the End of the Rainbow (Friday)

SUMMARY: Kinship caregivers of children in Protective Services custody often take on the caregiver role during a time of family crisis. The assistance of a Family Navigator, a paraprofessional with lived experience, demonstrated a reduced stress level in 74% of kinship caregivers at the Harris County Protective Services Clinic during a pilot project in 2015. These services were supported by a grant from the Hogg Foundation and were part of the clinic's Integrated Care Model.

 

Enhancing Medical Professionals' Compassion: An Interdisciplinary Collaborative Approach (Friday)

SUMMARY: This presentation will provide results from a collaborative research study in which behavioral health and medical professionals jointly trained medical residents in enhancing their compassionate response in breaking bad news to patients and family members.

 

Collaborative Family Healthcare in Specialty Settings - A Live Family Interview (Saturday)

SUMMARY: The purpose of this presentation is to highlight the intersection of illness and family issues. A therapist will conduct a live interview with a local family and a panel of physicians and therapists will discuss the case. Audience members will have time at the end for questions.

 

Family-Oriented Care Presents Obstacles, We Present Solutions (Saturday)

SUMMARY: This presentation will address common challenges associated with treating patients with their families in integrated care practices and settings. The presenters will provide a brief overview of three key barriers, will review current best practices and evidence-based guidance, and will illustrate dilemmas and the solutions in a role-play based on an actual patient/family clinical scenario.

 

Meeting Pediatric Behavioral Health Needs in Primary Care (Saturday)

SUMMARY: This session discusses the benefits and challenges of expanding integrated behavioral health to pediatric primary care and presents the data collected from a needs assessment, identifications of barriers, and provider education intervention within a large

Northwest health system.

 

Deepening our understanding of physical, emotional, and relational pain through interdisciplinary practitioner, patient, and family collaboration (Saturday)

SUMMARY: This presentation will describe how a collaborative approach between family therapists, a physician, the patient, and family facilitated an effective treatment outcome for an adolescent patient dealing with chronic pain. A deeper understanding of the bi-directional impact of the medical condition and the psychosocial stressors of adolescence and parent-child relationships will be discussed as well as a description of the treatment model and interventions that resulted in the treatment gains.

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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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