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The Dialectical Tension of Cultural Attunement in Collaborative Care

Posted By Katie Heiden-Rootes, Ariel Jones, Tuesday, September 16, 2014

It is highly likely that you took a “multicultural” course in graduate school. It is also likely that you heard terms like cultural “competence” that led you to believe that you were obtaining a level of professional competence for working with families who are different than you. However, it is also likely that you, like us, did not actually feel “competent” once you began working in the field. Perhaps you became painfully aware of your own lack of knowledge about different cultural groups, noticed inherent privilege you walked around with, or felt personal pain related to the oppression you’ve faced in life.

 

 

Falicov1 proposed a model called Multidimensional Ecological Comparative Approach (MECA) which seeks to embrace the dialectical tension of: 1) having knowledge about different culture groups and 2) acknowledging that we can’t know all of the different aspects of each culture given how different cultural identities interact to create unique ecological niches for families/individuals. Ecological niche refers to the particular location of a person’s cultural identity given their multitude of experiences – socioeconomic, race, religion, immigration status, education, marital status, children, etc. We need to hold in dialectical tension this knowing (e.g., many Latino immigrants adhere to traditional family values) and not-knowing (e.g., how individuals enact traditional family values when they are third generation Latino immigrants who are U.S. college graduates) in order to manifest a clinical and personal skill called cultural attunement. 

The not-knowing stance can be likened to cultural humility, a popular concept in family medicine. Cultural attunement then is a personal and professional skill requiring the uncomfortable holding of two dialectical truths – knowing things and not knowing things about the cultural realities of the people we treat – and then enacting curiosity and empathy to understand the client/patient.

Two dialectical truths - knowing things and not knowing things 

In collaborative care, cultural attunement is vitally important for improving health disparities for people of color 2. The ecological niche inherently challenges stereotypes of different cultural groups through critical examination of the dynamic nature of cultural identities for a given individual – including the patient and other care team members (e.g., family therapists, physicians, social workers, etc.). The outcome of such examination could be improved interdisciplinary communication that manifests into better patient-centered care. To explore the various ways cultural attunement is imperative in collaborative care, the following case study is offered. As an intern, within Saint Louis University’s Medical Family Therapy program, I (Ariel) had the opportunity to work in a collaborative care setting with many such professionals.  

 

Case Example

A Latino family came into the clinic identifying a 36-year-old female, Maria, as the patient in need of care.  Maria (who spoke limited English) and one other female family member (acting as a translator) were brought back to an exam room while the rest of the family remained in the waiting room, per instruction of the clinic staff. Maria complained of leg cramps, which made walking difficult though was unsure of the cause of her pain. She went to a chiropractor however who did not help the pain.

Upon examination, the team of doctors and staff found no major issues with her leg. When explaining this to Maria, she became emotional and began sobbing loudly. Many members of the team were very unsure about what was happening since it was believed that good news was being delivered. As the medical family therapist, I (Ariel) was called into the room to meet with Maria due to her emotional response to the seemingly good news. During this time, I found out that there was extensive family in the waiting room, many of whom Maria had requested join her in the exam room to also meet with the doctors and staff. 

While I had some knowledge about Latino culture there were still many aspects of this family’s unique ecological niche that were unknown to me. I invited back the entire family and they shared that their father had passed away recently due to complications with his leg after receiving inadequate medical attention. The family feared that this same issue was occurring with Maria. Thus, they felt it was vital to have an opportunity to discuss these concerns with the doctors. It became clear that Maria’s sadness in response to “seemingly good news” was entirely reasonable given her and her family’s fear of receiving poor medical attention and suffering the loss of another beloved family member. I then met with the family and the medical staff to share this new information and the doctor returned to the room to explain the results of the testing with the entire family.

Many aspects of this family’s unique ecological niche were unknown to me

Analysis

This clinic serves many low-income and minority patients. Since I (Ariel) am a black woman, I am often seen as an expert on the lives and cultures of many of the clients that are seen in the clinic. And while I have some knowledge of these cultures, the uniqueness of every family, patient in a given ecological niche is generally unknown to me. At one point, the lead doctor made the final decision saying it was best to have one female family member come into the room to increase Maria’s comfort. And while there were several reasonable arguments for this decision, I saw the inherent gender and professional power imbalance. Given the existence of patriarchy in some Latino cultures it seemed to me that it would be most beneficial to have a male family member present to speak with the male doctor. 

In retrospect, the family’s disclosure to me of their father’s death and concerns about medical treatment likely occurred due to cultural attunement happening between us. Several contextual factors seemed to promote this: the removal of the male doctor, allowing the male family members to enter the room, and my own status as a person of color. Dialogically, I assumed both a knowing (inviting in the family) and a not-knowing position (being curious about the emotional response) enabling the family to tell their story and for me to hear it and respond. This is the essence of cultural attunement.

Conclusion

Cultural attunement in collaborative care requires holding difficult conversations about the nature of presumed “knowing”. 

When exploring cultural dynamics as part of a care team, it is important to note the implicit and explicit hierarchical differences between the care team members and between patients and providers. Explicit titles and job descriptions and implicit cultural norms and identities define our ecological niche making possible the interaction of a given cultural script (i.e., white, male medical doctors are given final authority on treatment because they appear to “know” more). The result is a genuine lack of cultural attunement between collaborative care team members and between patients and professionals. Creating cultural attunement in collaborative care settings will likely require reevaluating the way our medical community operates and holding difficult conversations about the nature of presumed “knowing”. 

 

Medical and mental health professionals are often presumed experts (“knowing”) in their chosen field. Likewise, people of color who are professionals are often presumed experts on all other people of color (“knowing”). Both presumptions of “knowing” can be highly detrimental to relationships because they overrule “not knowing” curiosities and shut down conversation that seeks to understand the ecological niche of both professional and patient. It is equally as important to create an environment where “not knowing” is valued, and where there is a safe space to ask culturally pertinent questions to both patients and team members (e.g., clarification about cultural language, possible gender or racial dynamics at play etc.) that would promote cultural attunement and, likely, improve patient outcomes.  

References       

1.      Falicov, C.J. (2014). Latino families in therapy (2nd ed). New York, NY: The Guiliford Press.

2.      Johnson, R. L., Saha, S., Arbelaez, J. J., Beach, M. C., & Cooper, L. A. (2004). Racial and ethnic differences in patient perceptions of bias and cultural competence in health care. Journal of general internal medicine, 19(2), 101-110.

 

Katie M. Heiden-Rootes, MA, LMFT, PhD

Recent PhD graduate of Saint Louis University’s Medical Family Therapy program in St. Louis, MO. Clinically active at Ascend Family Institute in Rogers, Minnesota as a marriage and family therapist, supervisor, and Clinical Director. Also, teaching at St. Mary’s University of Minnesota in their COAMFTE accredited MFT Program. Research and clinical interests includes clinical effectiveness with racially and sexually diverse families; couples sexual and emotional health; and parent-child relationships in transracial adoption and foster care.

Ariel N. Hooker Jones, MSW, LCSW

Current doctoral student at Saint Louis University’s Medical Family Therapy Program in St. Louis, MO. Recent coordinator and family therapist at the Center for Counseling and Family Therapy at St. Louis University and recent medical family therapy intern at a community clinic providing free medical services for low-income patients in the metro St. Louis area. Research and clinical interests include counseling with minority and underrepresented families and couples; parent-child engagement and play therapy; and play as a protective factor within families exposed to violence.

 

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Engaging Family Members in Adult Integrated Care Settings

Posted By Irina Kolobova, Jennifer Hodgson, Tuesday, September 2, 2014
For football teams to score points, multiple members of the team, such as the quarterback and the skill players (i.e., wide receivers and running backs) must work together with the support and direction of the coaching team. Similarly, in integrated care settings, the patient (quarterback), family members (skill players) and the healthcare team (the coaching staff) need to work together to meet treatment goals (score points). It requires the collaboration of all of these parts of the system. Without the skill players, the quarterback and coaching staff can design plays but may struggle to execute them. Similarly, without family members’ engagement, patients and healthcare providers may struggle to successfully meet treatment goals.
 

 

Just like a football team, working together is a foundational aspect of integrated care. Family members are the wide receivers and running backs in treatment plans - their presence is not coincidental and their inclusion is critical. Just to give you an example of the magnitude of how many family members serve as caregivers, in 2009 alone there were 42.1 million family caregivers in the United States providing an estimated economic value of $450 billion in unpaid contributions1

What is concerning besides the amount of work caregivers do, is often the lack of preparedness providers have for interacting and intervening with them as a part of patient care.  However, family centered interventions have been shown to be superior to usual medical care for patients’ physical and mental health2,3. Cene et al provided one example of this when they reported that accompaniment of a family member to a routine medical visit was associated with better self-care in heart failure patients4. In this blog entry we will provide a few recommendations for how providers can engage family members in adult integrated care settings. 

1.  Shifting our View

Family members serve as an extension of the healthcare team 

Central to making integrated care more family-centered is the need to shift our view of the role of family members. It is time to shift our view from families as visitors to members of the care team. Family members are vital in supporting treatment goals, medication adherence, and lifestyle modifications1. Family members can also help patients remember care plans established during medical visits1.  In many ways, family members serve as an extension of the healthcare team. They continue to support the patient towards better health after the medical visit has ended. 

 

Having family members engaged in visits also leads to more information shared with the medical provider. Patients were more likely to discuss difficult topics and were more likely to understand the physician’s advice when a friend or family member accompanied them to their clinic visit5. Family members are also likely to disclose information to the provider that a patient may opt to omit. For this reason, we encourage providers to invite family members to be active participants early in the process. In practice, this can include greeting the family member(s) and patient together as a team, rather than greeting the patient and then the family member(s).  

2. Engaging Family Members on Site

While some patients will bring their accompanying family members with them in the room, others will be waiting in the lobby or in the car for their patient to come out. We have trained family members to do this and have set up our exam rooms to accommodate the bare essential number of people. By adding a second or third chair to the exam room it sends the message to the patient that bringing others with them is okay. Hanging photos in the office of families (diversity is important), regardless of your specialty, is equally important as it again sets the tone for inclusion and a welcoming family context. 

When entering the exam room, we recommend that the nurse or medical provider have the patient introduce those who are with them and ask if they want them to remain. If so, ask the family members what concerns them or impresses them most with their loved one’s health. Oftentimes family members, including children, are just waiting to be asked as they may not dare offer on their own out of respect for their loved one and the healthcare team. Finally, when setting the treatment plan make sure the patient AND family member understand the plan and what their role is in it. Make sure the family member is integrated to the best of their ability and that the patient and family members are clear on the treatment plan. 

3. Reaching out Beyond the Exam Room

Even when family members are not present for the visit, it is still possible to include them as active participants. With permission from the patient, it is recommended that a member of the healthcare team contact a patient-identified family member for their input regarding the biopsychosocial nature of the patient’s health and/or presenting issues.  This encounter gives healthcare team providers a chance to share with the family member the care plan so the family member can support the patient with this plan. If calling a family member is not feasible, another way to engage a family member is to ask the patient for the family member’s view point on the issue, the patient’s overall health, and the proposed care plan. Making space for the family member’s voice can be as important as having them present.

Making space for the family member’s voice can be as important as having them present. 

 

4. Caring for the Caregiver

As we think about the role of family members in integrated care settings, it is also important to consider how their role as a caregiver may impact their own health. Multiple researchers have reported that caregiving can negatively impact caregivers’ physical and mental health2,6,7.  As providers, it is important that we attend to the potential needs and health of the family members that are accompanying patients to their visits. This may be just as simple as asking the family member how they are doing. It is a simple gesture but is greatly appreciated by family members.  Just to see what this distribution looks like in your practice, try asking your patients how many people they are caregiving for in their lives emotionally, cognitively, physically, and/or financially. You will be amazed at how many of our own patients are doing what we do as providers all day long but without a healthcare team there to support them.

Making integrated care settings more family-centered requires intentionality in incorporating family members as active participants. As collaborative care becomes the new norm, it is time that we incorporate family members as a part of the collaborative care team. While the quarterback (the patient) is vital to the game, without the skill players (family members), the chances of coaching the team to a Superbowl win (overall improved health) is nearly impossible. 

References


References marked with an asterisk (*) are highly recommended

*1. Reinhard, S. C., Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update: The growing contributions and costs of family caregiving. Retrieved from http://hjweinbergfoundation.net/ficsp/documents/10/Caregivers-Save-the-System-Money-With-Uncompensated-Care.pdf

*2. Hartmann, M., Bäzner, E., Wild, B., Eisler, I., & Herzog, W. (2010). Effects of interventions involving the family in the treatment of adult patients with chronic physical diseases: a meta-analysis. Psychotherapy and psychosomatics, 79(3), 136-148.

3. Martire, L. M., Lustig, A. P., Schulz, R., Miller, G. E., & Helgeson, V. S. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health psychology, 23(6), 599-621. doi:10.1037/0278-6133.23.6.599

4. Cené, C. W., Haymore, L. B., Lin, F. C., Laux, J., Jones, C. D., Wu, J. R., ... & Corbie-Smith, G. (2014). Family member accompaniment to routine medical visits is associated with better self-care in heart failure patients. Chronic illness, 10, doi:10.1177/1742395314532142.

5. Rosland, A. M., Piette, J. D., Choi, H., & Heisler, M. (2011). Family and friend participation in primary care visits of patients with diabetes or heart failure: patient and physician determinants and experiences. Medical care, 49(1), 37-24.

6. National Alliance for Caregiving (NAC) & American Association of Retired Persons (AARP) (2004). Caregiving in the U.S. Retrieve from http://www.caregiving.org/data/04finalreport.pdf

7. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. The Journal of the American Medical Association, 282(23), 2215-2219. doi:10.1001/jama.282.23.2215

 Irina Kolobova, MA is currently a doctoral student in the Medical Family Therapy Program at East Carolina University. Irina completed her master’s in Marriage, Couple and Family Therapy at Lewis & Clark Graduate School of Counseling and Education. Her current clinical and research interests include integrated care in rural settings and the psychosocial needs of Adolescent and Young Adult patients with cancer and their caregivers/support persons. Irina is particularly interested in program development and evaluation to better address healthcare disparities in primary care and oncology settings.
 
  Jennifer Hodgson is a Professor in the Departments of Child Development and Family Therapy and Family Medicine at East Carolina University (ECU). She has published and presented extensively in the areas of medical family therapy and integrated care, and has taught and trained in family medicine residency education since 1996. Her most recent accomplishment was a 2014 edited text entitled, "Medical Family Therapy" Advanced Applications" with co-editors Lamson, Mendenhall, and Crane. She helped to write and established the first doctoral program in Medical Family Therapy in the country and has initiated behavioral health integration in numerous primary, secondary, and tertiary care clinics. She is the past President of the Collaborative Family Healthcare Association, Past Chair of the Commission on Accreditation for Marriage and Family Therapy Education, and is outgoing Chair for the North Carolina Marriage and Family Therapy Licensure Board. Her academic leadership roles also include past program director for the ECU Marriage and Family Therapy master's program and founding program director for the Medical Family Therapy doctoral program.

 

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Family-Centered Care Needs Functional Support From the Health Care System

Posted By Leatrice Sherer, Tuesday, August 19, 2014
The physician’s request was compelling: “I have made an appointment for you with a 33 year old Hmong man and his wife. He has already had 2 heart attacks, from which he had to be resuscitated. His wife witnessed everything. He is being prescribed medications that could greatly prolong his life, but he is very depressed and noncompliant. He takes his meds some of the time, if his wife reminds him. He misses appointments. If he does not change soon, he will die soon, and I have told him that over and over again. I have told him to think about his 3 young kids, even if he doesn’t care about himself. You have to do something!”

At the time I received this request, I had worked full-time at this FQHC for 8 years. Despite having integrated records, and receiving occasional requests for crisis intervention, Behavioral Health Services was unfortunately still functioning pretty much as a co-located mental health service. Finally, after years of lobbying, I had been given the reluctant go-ahead from the Executive Director to embed within the clinic for one half-day per week for one-month, and “then we will see about continuing it”. The physician’s request came in the third week of the “let’s see” period. Frankly, it felt like a do-or-die situation for both the patient and me.

"If he does not change soon, he will die soon "

Being family-centered, the (also Hmong) physician had scheduled the appointment for both the man and his wife to see me, and both had come. Yet, when I entered the exam room, the man was alone. I immediately addressed bringing his wife in. He said she could come in later but first he wanted to speak with me alone. I “met him where he was” and began by speaking with him alone, actually for most of the session. He struck me as intelligent and insightful.

He had immigrated to the USA at 15 (just before his own father died of a stroke), so he did not get a decent formal education. He had only his physical body to rely on; he became an award-winning body builder, laborer and unlicensed auto mechanic. Following his heart attacks and surgeries, he lost his short-term memory and could no longer work as a mechanic. He had misunderstood post-surgery instructions to abstain from physical work as meaning “forever”, so he stopped all exercise. He had misunderstood instructions regarding his pacemaker and thought he had to stay away from electricity. That eliminated cooking, mowing, and fixing things. He now felt he could contribute nothing to his family. His wife periodically pointed that out and threatened to leave him.


Okay, I passed his test, but would I pass muster with his wife? 

Without his income, his wife was trying to start her own business. She needed the use of the one car and the one telephone they could afford. His days were spent sitting in her store front, watching the pre-school aged kids, relying on her to make his phone calls, remind him of things, and take him to appointments. He acknowledged his depression and hopelessness but said he wanted to live for his children’s sake. He also said that he had to depend on his wife for many things “no man should have to”, and between her alternately smothering him with advice and berating him about his irresponsibility, he felt like giving up altogether.

I asked his wife to join us, mostly to apologize for making her wait and to assure her that I would involve her soon. She immediately burst into hysterics, alternately crying and angrily “tattling on him”. He responded by acting alternately “stupid”, passive or rebellious. I immediately realized that this man had structured our initial interview correctly. First, in the absence of his wife, he showed me the man he could be, if treated respectfully. Second, with his wife present, he showed the relationship dysfunction that defeated both of them. Third, he was testing whether I would respond in a different way than his other providers. Okay, I passed his test, but would I pass muster with his wife? Structurally, I had to help her back away from either caretaking him or withdrawing from or carping at him. But I had to plan interventions that would earn her trust, help her understand that her over-reactive behavior was triggered by trauma, and help her manage the intensity of her anxiety and anger. 

 

At the time, this FQHC had a Hmong mental health case manager on staff, being paid by a grant. She and I discussed which cultural factors and family dynamics should inform our interventions. The case manager reminded me that because mistresses are common in the Hmong-American culture, she would have to start by allying with the wife to “gain permission” to take over some of the wife’s duties. I educated the case manager about the over-responsible/under-responsible dynamic and to be aware that the patient might try to get her “to do for him” instead of learning to “do for himself”. She did a good job; she helped him gain the knowledge and tools to gain access to the resources he needed to rehabilitate. The case manager frequently visited with the wife to maintain trust and to keep her anxiety level better managed. We both used some motivational interviewing to increase the patient’s commitment to self-care.

My job was two-fold:

• With the patient, addressing the many losses underlying his depression, affirming his effort and progress, and giving him “tips” about negotiating marital conflicts and strengthening his family relationships. (He and his wife could not manage to get into the clinic together for couples’ work).

• With the physician, making her aware that her style of interacting with the patient had become similar to that of the wife, with the same counter-productive results. She too had a high level of anxiety. As a first-generation Hmong professional, she was tremendously motivated to be a great doctor, and she was very committed to her community. The man’s frail health and noncompliance frightened her, and she made herself responsible to keep him alive. Once she understood, and I promised to keep her informed, her anxiety lessened and she was able to develop a more appropriate interactive style with the patient.

When I left the clinic 5 years later, this man was still alive and living with his wife and children. He was still not the most compliant patient in the world, but he was medically stable due to his greatly improved self-care. Looking back, I believe that no matter the type or number of behavioral interventions I could have used in this situation, none would have succeeded without the family-systems-informed context within which we worked, both within the patient’s family and within that health care delivery system. The principals would have continued to behave the same, and I would have become just another health care provider to avoid. I was fortunate to have had: 1) a case manager – who could work out in the community and whom I could supervise; 2) access to the primary care provider – who had learned to trust me; 3) the autonomy to develop a treatment plan that combined “behavioral” and “mental” health interventions; and 4) the availability of all the component services and an integrated communication tool, all centered in one place.

Unfortunately, when I left this clinic, the Hmong mental health case manager had been gone for 2 years; her grant had ended. A new CEO was more open to methods of integrated care, but “productivity” remained the bottom line. All health care providers were being hounded to see more patients for shorter periods, in part to pay for case management services. Locally, behavioral health providers in the FQHC consortium who had already gone to the half-hour appointment model were asking, “When do people find the time to chart? Talk? Think? Do teams?” 

No interventions would have succeeded without the family-systems-informed context within which we worked 

 

Nationally, some behavioral providers are suggesting that only “primary, behavioral care” should occur in the primary clinic and that “secondary, mental health care” should be referred out. Some behavioral providers – mindful of time pressures, privacy issues, and woefully inadequate EMR templates – are suggesting that we document only the minimum information necessary to get reimbursed by insurance. It is ironic that, while the philosophy of health care is moving more towards being more family-and-community centered, collaborative and integrated, financial and other factors are enticing providers to structure our health care environment in ways that can defeat the system-informed care that we know is best for patients and for us.

If we don’t make time to talk, and we don’t use chart notes as a way to inform and integrate all providers involved with the patient and family’s care, and we put up additional barriers by adding on outside providers, are we not in danger of colluding in the creation of a disengaged, poorly communicating, dysfunctional “family system” of health care delivery? Wherever our creativity and practicality lead us in designing new systems of health care, we need to remember that structure determines function. We need to design systems that facilitate both family-centered care and the collaborative, communicative work environment that allows the entire family of health care providers to do their best work. 


Leatrice Mankin Sherer, PhD, LP, LMFT received her doctorate in Clinical-Child Psychology from the University of Massachusetts-Amherst and later pursued family therapy training.  She “lucked” into her first job, as a faculty member in a family medicine residency program. Although she was initially frightened that this unusual position would prevent her from getting a “real” psychology job in the future, it did not matter. She “lucked out” again; she had found her passion. Her career has been spent providing family-centered, integrated care, primarily within medical settings. She has served on the faculties of three family medicine residency programs, in SC, ME and MN. In the latter position, she established a medical family therapy internship program. She and the medical program director developed curricula to teach residents systemic thinking, to teach team-building skills using in situ learning opportunities (e.g., practice management committee), and to mobilize healthy aspects of the medical education system to help residents in difficulty. These curricula were presented through various STFM workshops and through consultations at several family medicine and other residency programs. She has also provided training to diverse medical and behavioral providers in medical and academic settings. Most recently, Dr. Sherer was the Director of Behavioral Services at an FQHC, where she provided patient care, physician consultation, and supervision of behavioral staff and medical family therapy interns.

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50 Shades of Family

Posted By Kaitlin Leckie, Tuesday, August 5, 2014
When I seek to justify the purposeful integration of the family in healthcare, the time I spent practicing analogies for the GRE, SAT and the other equally torturous standardized tests finally pays off. Ask me why family and other social relationships are essential to a patient’s care and—alas! My mad analogy skills finally have a chance to shine. For I will tell you, the patient is to the family as the organ is to the body.

After all, you can take the patient out of the family, but you can’t take the family out of the patient. In a recent presentation for healthcare providers on activating the family in support of the patient, I showed two lists:


Possible Family Roles



 

Possible Family Actions

 


Neither list is comprehensive, just compiled in a few minutes based on my experience with patients, but both made their point: whether or not the family is physically present in the exam room, the family is present in the exam room, for good or for bad. Whether or not a healthcare clinician chooses to acknowledge the family’s influence, a 10-60 minute visit with a healthcare provider cannot compare to years spent thriving or surviving with family.

Even when considering the power differential between patient and clinician and the authority the clinician status brings, the influence of the family on the patient cannot be denied and should be considered. From basic hygiene practices and beliefs about healthcare that are developed during childhood to stress surrounding current marital discord, the family’s impact on health is present and pervasive.


Although not everyone shares in my emphasis on the family, many do.


My belief in the importance of “family at the center of healthcare” is shared by other members of CFHA’s Families and Health Interest Group. We are guided by a shared vision of “improved healthcare through engaged families and collaborative relationships.” Our mission is “to promote a family-centered approach within CFHA and other healthcare organizations and to foster collaboration in scholarship, education/training, practice, and policy.”

While it is comforting to know that like-minded individuals exist who share in the “why” behind what I do as a medical family therapist, this knowledge is incomplete. What is needed next is more information about how we center healthcare on the family and what this looks like in the exam room.
 
Come Join CFHA’s Families and Health Interest Group 


What would a list of standardized approaches & treatments by healthcare providers to show their consideration of these roles look like? If we compiled the techniques used by clinicians when demonstrating family-focused healthcare, what actions would be listed?

We know a lot more about how we treat organs in the context of the body than about how we treat patients in the context of the family. Certainly, we’ve documented and tested physical treatments more extensively. The time has come to study our family-oriented/family-centered care to the same extent that Heimlich perfected his maneuver and dialysis was developed to replace the kidney.

We suspect integrated care is successful. Now let’s explore how we reach this success. We know the value of the family. Now let’s identify specific ways we include them. We will be better equipped to treat patients in the context of the family by systematically studying the tools and techniques that make up our treatments. Not by poking and prodding, but by sharing and observing our successes, failures, nightmares, and dreams. 

You are invited to start by sharing your views and vision in the following brief survey. Just 5-10 minutes of your time will contribute to a knowledge base that will help guide the Families and Health Interest Group (FHIG) in achieving our 2014 deliverables. The survey results will be shared at CFHA’s national conference (Session: What's Next? Advancing Healthcare from Provider-Centered to Patient-Centered to Family-Centered) and will be discussed during future FHIG meetings.  

Whether you are simply curious about the concept of family-centered healthcare or are as passionate as I am for the importance of the family in health, you are invited to join the Families and Health Interest Group, open to CFHA members. The easiest way to get involved is by connecting with us during our upcoming tele-meeting on Friday, August 8th, at 12pm (EST). Simply dial (530) 881-1212 and use meeting ID: 517-873-035. 

 

 

Kaitlin Leckie, MS, LMFTA (TX) is completing a Medical Family Therapy fellowship at St. Mary’s Family Medicine Residency in Grand Junction, Colorado. She is a doctoral candidate in Marriage and Family Therapy at Texas Tech University. She currently serves as the Chair-elect of CFHA’s Families and Health Interest Group. Her current research centers on the role of family and social support on patient health activation in high-risk patients, particularly in relation to their use of healthcare services. She is enthusiastic about teaching behavioral sciences and speaks movie quotations fluently.

 

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Social justice: Can collaborative care address the health disparities of society?

Posted By Ruth Nutting, Tuesday, July 22, 2014

 
It is my prediction that the majority, if not all, of you reading this have or are experiencing hierarchical, fragmented health care. Going to the doctor is like getting an appointment with a higher power. You wait for your appointment, perhaps months, in order to see your doctor for a coveted 10 minutes. During these coveted 10 minutes, you wait for the doctor’s decree…most often, a list of endless referrals. Then begins the journey, throughout the town or state, to these various providers; all the while, you are signing endless releases of health information, in hopes that communication will flow from provider to provider.

For some populations, the days of traveling to multiple appointments and hoping for communication to flow between various providers are long gone. As the collaborative model increases in health care, more and more patients, specifically patients from under-served populations, are experiencing collaborative care, often found in a Patient-Centered Medical Home (PCMH). Although various in nature, most collaborative models of care focus on the belief that family professionals (e.g. physicians, nursing staff, behavioral medicine specialists, social workers, etc.) need to deconstruct traditional patterns of hierarchy so that families are engaged as active, empowered participants in the services they receive.  

What can occur through collaborative care is mind-blowing. I say this from first-hand experience, not a as a patient but as a provider of behavioral medicine in a PCMH. At our clinic, we provide Shared Medical Appointments (SMA) to patients with Type II Diabetes. During these appointments, physicians, nursing staff, behavioral medicine specialists, pharmacists, and a diabetes educator collaborate in providing care to a group of 6-8 patients. The level of collaboration, which leads to resourcefulness and efficacy, is impacting, but what is most beautiful is the spirit and unity of the participating patients.

These patients come together, some for over a year and others for the very first time, and welcome one another with open arms. Together, they share personal highs and lows; they encourage one another to reach goals, whether it is lowering A1Cs, weight loss, or smoking cessation, and support one another in bettering their quality of life (e.g. getting involved in various volunteer services, scheduling group walks outside of the SMA). These patients are inspiring and what they offer one another cannot be offered by a provider.

I highlight this one initiative of collaborative care to demonstrate the possibilities and empowerment that collaborative care settings can offer. If these patients were seen by a typical primary care physician they would not experience biopsychosocial healing or the empowerment from others who face the same struggles. Instead, these patients would potentially feel isolated and discouraged, as they faced various appointments without a support system, and were responsible for continuous communication between providers.
Collaborative care models focus on deconstructing traditional patterns of hierarchy 

But what about patients who are not of an under-served population? These patients continue to receive the majority of their health-related care from primary-care physicians who do not practice collaboratively. As a result, these patients often receive fragmented care and most likely are not having their psychological, social, and spiritual needs attended to. Without these needs receiving attention patients are not being treated continuously or holistically and health disparities are likely to remain or increase.

To further clarify, fragmented health care can often increase health disparities, as patients fall through “the gaps” of communication and care. Collaborative health care focuses on closing these gaps. Therefore, it is crucial that the collaborative model of health care be available to all populations in order for health disparities to decrease in the United States. It is my hope that with the increase of research highlighting the benefits of collaborative care more health-related institutions will incorporate this model so that all populations experience a decrease in health disparities and an increase in well-being.

Ruth Nutting is in the process of obtaining her PhD in Human Development with a concentration in Marriage and Family Therapy from Virginia Polytechnic Institute and State University. Currently she is interning as a Behavioral Medicine Specialist in the Internal Medicine Residency program at University of Nebraska Medical Center-Midtown Clinic. In this position she consults with providers and patients in regards to psycho-social concerns, provides ongoing psychotherapy to patients, supervises master’s MedFT interns, and participates in Shared Medical Appointment related research, among various other tasks. In 2012, she earned her MA in Applied Psychology with a concentration in Marriage and Family Therapy from Antioch University New England. Her research interests are related to the area of coping and resilience in relation to young adult couple systems in which one partner has a chronic illness.

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Community and health behavior: Who’s pushing people into the river?

Posted By Deepu George, Thursday, July 10, 2014
My dissertation study focused on understanding longitudinal community influences on health behavior, specifically physical activity (PA). As a clinician working in a primary care setting for the past year, I have begun to piece together the different implications of my study variables and the broader theoretical framework. The focus of my study was to understand environmental, social, and personal influences on PA. In order to go beyond individual factors influencing PA, I had to use a broader theoretical framework. The social organizational theory became the central lens through which I operationalized community influences on PA.

In a nutshell, the social organizational theory of community action and change helped me think about social structural and social processes that influence PA. There are real community antecedents that can influence behavior, particularly the physical and social infrastructure. I captured this by looking at neighborhood stability using census tracts contextual data from Add Health national data set. There are also important social organizational processes like informal networks and formal systems. Informal networks are friendship groups and relational settings that foster friendship, involvement, trust, and reciprocity within the community. Formal systems are agencies, organizations, and other structural groups that respond to different needs of the society. For more authoritative papers on the social organizational theory, check out this website.
 

Overall, results show that neighborhood stability during adolescent years is an important influence on PA over a period of time. Individual social participation through civic engagement and citizenship emerged as a strong influence on PA. Research on PA and its broader influences informs my work as a clinician in primary care setting in two ways.

Physical Activity and Therapy. Philosophers as early as Plato noted that PA is important for human development and growth: “In order for man to succeed in life, God provided him with two means, education and PA. Not separately, one for the soul and the other for the body, but for the two together. With these two means, man can attain perfection.”

Psychotherapy has developed mental and behavioral models to influence emotional and psychological changes. However, biological influences on emotional, psychological, and behavioral changes have largely been ignored in psychotherapy. PA is the ‘royal pathway’ to influence biology in psychotherapy. Including PA in therapy is helpful because of the following evidence:

• PA is intimately connected to workings of the human brain. In fact, regular PA can trigger similar mechanisms of psychiatric medications for anxiety and depression.

• PA has been found to help the following: academic performance, sexual satisfaction, increase concentration, decrease symptoms of depression, anxiety, and improve performance in learning, memory, and recovery from illnesses.

• More curiously, John Ratey and colleagues (results from their work documented in the book Spark), documented mechanisms through which PA improves memory, learning, anxiety and stress response. Their study showed regular PA alters seminal structural aspects of the brain to facilitate growth.

Therapists can find creative ways to incorporate PA as part of their therapy work with patients. Regular PA should be an important element in self-management long after therapy is terminated. Therefore, recommending and prescribing PA as part of therapeutic work is one way of influencing biology to better sustain changes made in therapy.


Physical Activity, Therapy, and Social Organizational Theory. In his essay entitled “A case for refocusing upstream: The political economy of illness”, John B. Mckinlay (2008) wrote an analogy using a river and drowning people to describe clinical medicine:

Sometimes it feels that I am standing by the shore of a swiftly flowing river when I hear the cry of a drowning man. So I jump into the river, pull him to shore, and begin artificial respiration. Just when he begins to breathe, there’s another cry for help. So, I jump into the river, reach him, pull him to shore, apply CPR. And then just as he begins to breathe, there’s another cry for help, and back in the river again and then another yell, and again and again. So, you know, I’m so busy jumping in rescuing them that I have no time to see who the hell is upstream pushing them all in. (p. 578).
 

Behavior changes like commitment to regular PA and other goals that emerge in therapy have both downstream and upstream factors. While psychological theories help address downstream factors, a lens like the social organization theory can help therapists consider upstream factors. In the present study, social participation and concentrated affluence were strongly associated with PA. Therefore, while behavioral health treatment is analagous to performing CPR (as in providing individual care through therapy), a broader perspective can help therapists and clients consider both upstream and downstream factors that are obstacles to behavioral improvement. In addition, therapists can incorporate individual theories of motivation and planned behavior change to help with PA. Using important reviews like Ratey and Hagerman’s work, therapists can better educate patients about how PA influences biology and brain functioning to help them work with depression and anxiety. To consider upstream or broader aspects of behavior change, therapists can use the social organizational model of community action and change. Understanding community antecedents – the physical and social infrastructure – of a patients’ social, environmental makeup can be instructive in planning various activities.

For example, in one of my recent clinical encounters, to help a patient manage her hypertension, it was important for us to figure out how, when, and where she would walk for exercise. As part of behavioral change work with her (downstream factors), we mapped out a schedule, identified barriers to walking, solutions to overcome present barriers, and made specific behavioral commitments. We further elucidated her motivations and reasons for her commitment to lifestyle changes (walking more regularly and eating a balanced diet). Then, we mapped out her neighborhood (upstream factors), location of the grocery store, took notice of nearby parks, school grounds. We utilized her own knowledge and used Google Maps to track details during her office visit. All of this was entered into her personalized plan for the appointment. As part of her plan, the patient was able to schedule two walks during the week to go to nearby grocery store as part of her walk schedule, especially to increase fruits and vegetables to her diet. Considering both individual level factors (commitment to behavioral change) and community antecedents (parks, school grounds, route to grocery shop) were important clues to change.
Understand the community antecedents – the physical and social infrastructure –  of a patient's environment

Deepu George, PhD, LMFTA, is the current Medical Family Therapy Resident at the Duke/SR-AHEC Family Medicine Residency Program in Fayetteville, NC. He is interested in social determinants of health, medical family therapy, community development and capacity building. With a Master’s Degree in Holistic Psychological Counseling from Bangalore, India, his aim is to continue his passion for applying systems lens in health care, family therapy, conflict resolution & peace-building, and community capacity work. He will soon graduate from the University of Georgia and has recently accepted a teaching position in McAllen, TX.

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Caregiving Lessons From Movies and Books

Posted By Barry Jacobs, Wednesday, June 25, 2014
(This blog post is a reprint of a piece by Dr. Jacobs from AARP Caregiving Resource Center. It has been reprinted here with permission from AARP. Click here for the original post.)  

"The light … drew out of the darkness her puckered throat and …. deepened fantastically the hollows … of her high-boned face." Thus did novelist Edith Wharton describe in her 1911 novella, Ethan Frome, a disgruntled family caregiver's negative, macabre perception of his chronically ill wife. (Maybe you remember reading it in high school.)

Over a century later, our population is much older, and family caregiving is more prevalent than ever. It is little wonder, then, that more and more American movies and novels are portraying brave and beleaguered family caregivers. As with the best artistic creations, they convey psychological truths more credible and profound than those found in works of nonfiction. They illustrate the challenges that caregiving families face, validate our own negative and positive perceptions, and sometimes offer instructive pointers.
 

What's more, they provide hard-pressed caregivers the momentary relief of getting lost in imaginative and compelling stories. Here are six of my favorite movies and books with a caregiving theme.

 Amour

An Academy Award winner for best foreign language film, this 2012 movie tells the story of a mostly devoted, octogenarian husband caring for a wife who's descending steadily into vascular dementia after a series of strokes. The director gives us an unvarnished depiction of a couple's life of misery while coping with illness — the unending moans of pain, the backbreaking bed and shower transfers, the claustrophobia of being largely confined to one's own apartment — as well as the disappointing support systems of unreliable and abusive home health aides, ineffectual doctors and nurses, and self-absorbed adult children. As vivid a glimpse of suffering as this movie paints, it is no vision of ideal caregiving. The husband is too rigid, trapped by promises made. He aggressively stymies his daughter's efforts to help out and fails to recognize or seek treatment for his disabling depression. His final solution to their problems may strike some as compassionate but, in my mind, represents sustainable caregiving's ultimate failure. View this movie for its meticulous acting, not as a model for action. 

​The Descendants

In this 2011 movie, George Clooney plays a man whose wife becomes comatose after a boating accident. It's more a depiction of end-of-life issues than caregiving issues, yet it conveys two important lessons for all caregivers: The husband's and children's ambivalent response to the wife's plight is a reminder that emotional reactions are never just about the current medical crisis but are always shaped by events and interactions in the past (in this case, the wife's affair). The movie also teaches — through its final scene where the father and daughters cuddle up on the couch to watch a movie — that families do endure and can heal, even after horrific losses.

Robot & Frank

This 2012 comedy is about an aging ex-convict (Frank Langella) who still lives alone despite the fact he can no longer remember or reason. His adult children persuade him to try out a futuristic robot butler that will awaken him, feed him balanced meals and force him to exercise daily. Instead, the former jewel thief instructs the robot to go on a crime spree in the neighborhood. The take-home message: Caregivers should take into account that even dementia care recipients may retain some formidable wits and skills.

The Savages

Caregiving can make you a better, more mature person. That is Hollywood's rosy lesson for caregivers here. In this inspiring 2007 movie, a brother (Philip Seymour Hoffman) and sister (Laura Linney) decide to step up and care for their elderly, demented father — from whom they were estranged for many years because of his physical and emotional abuse. They alter their professional and personal lives and grow emotionally through the process of advocating for him in his antiseptic nursing home. After his death, they reap the reward of being able to make deeper, more sustainable commitments in their personal and work relationships.

Scar Tissue

A tortured son caring for his demented mother doesn't fare nearly so well in this novel by biographer and politician Michael Ignatieff (Farrar Straus & Giroux, 1994). Its story contains many familiar components — including sandwich generation torment, rivalrous siblings and determined attempts to win a distant parent's approval — but amounts to a cautionary tale about compulsive caregiving. For Ignatieff, there's a thin line between virtuous self-sacrifice and vexing self-destruction propelled by guilt. His pointed lesson is that the too-obsessed caregiver eventually loses his sense of self as assuredly as the care recipient with dementia.

Living in the Land of Limbo

This new collection of short fiction and poetry about family caregiving, compiled by AARP contributor Carol Levine (Vanderbilt University Press, 2014), includes stories of both tortured and enlightened caregivers by such noted writers as Alice Munro, Raymond Carver and Mary Gordon. In "We Are Nighttime Travelers" by writer and physician Ethan Canin, an elderly man with diabetes complications uses his growing confusion to reach out to his longtime but distant wife. The couple embraces for the first time in a decade after a night of strange behaviors caused by his delirium. ("My hand finds her fingers and grips them, bone and tendon, fragile things.") Canin's short story is a reminder that, even with illness' slow decimation, sweetness remains when caregiver and care recipient find a way to turn toward each other.



Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford) and the forthcoming Caregiving Family Stories & Beliefs, a collection of 25 of his previously published essays and case stories on families and illness.

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Preparing to Fly

Posted By Stephanie Trudeau-Hern, Monday, June 16, 2014
Family-centered care was an inherent concept in my mind long before I could put language to the phenomenon. At 19 years of age, I bore witness to an exhausted mother of three who held two full time jobs. The first was considered a normal, socially accepted job. It paid the bills and provided basic necessities to keep a small household afloat. Her second job was a little more obscure; it was a job for which she had received no training, no support, no pay, and no recognition. She, at 37, became a spousal caregiver. Back in 1998 this was a foreign concept to healthcare systems in rural North Dakota. Caring for the caregiver, or even recognizing the impacts caregiving had on spouses and families, was essentially ignored. The patient, my father, was diagnosed with a rare autoimmune disease that rendered him physically, socially, and emotionally incapacitated. 

Fast forward 16 years…..

“He who would learn to fly one day must first learn to stand and walk and run and climb and dance; one cannot fly into flying.” ~Nietzsche
 

I am currently standing on the cusp of an evolution in healthcare; I am preparing for my time to fly. I have the opportunity to participate in a movement that has become my life’s mission, expanding the limited definition of “patient” to include the family as a unit of care, or the lens through which we advance treatment.

What is family-centered care? Who are family caregivers? I feel compelled to break this down into such a basic form, keeping in mind that not everyone reading my post has been bathing in the Collaborative Care Kool-Aid fountain that I have. Frank de Gruy, Susan McDaniel, Barry Jacobs, John Rolland, Bill Doherty collaborated efforts with Theodora Ooms, Jana Staton and Mary Myrick, of the National Healthy Marriage Resource Center (NHMRC) proposing additions to the Better Care, Lower Cost Act.

We need a common footing, and that footing is family-centered language In their document, the proposed language of family caregiving is as follows: “Family caregivers are spouses, partners, adult children, siblings, friends and neighbors who provide many kinds of support, assistance and, increasingly, help with medical procedures so as to enable millions of persons to remain living in their homes and communities. The term ‘family caregiver’ however obscures the unique legal, emotional and social characteristics of caregiving between spouses. Spousal presence and influence on chronic illness prevention, care, and treatment is much more common than generally acknowledged”.

Family-centered care as posed by AARP’s Person and Family-Centered Care (PFCC) definition is: “an orientation to the delivery of healthcare and supportive services that addresses an individual’s needs, goals, preferences, cultural traditions, family situation, and values. PFCC can improve care and quality of life by its focus on how services are delivered from the perspective of the older adult and, when appropriate, his or her family. PFCC both recognizes and supports the role of family caregivers, who often are critical sources of support for older adults with chronic or disabling conditions”.  

I am not here to give you a lesson on definitions, but I do believe we all need a common footing to move forward, and that footing is the common family–centered language from which we hope to operate. Why do we still need to educate others on concepts that seem so inherent to the patients and families affected by chronic illness? During my time as a Medical Family Therapist in an oncology center, it always astonished me that patients, spouses, and family members so easily grasped the concepts of family–centered care. When I would explain my systemic and relational approach to therapy, they would look at me and say, “Well yeah, isn’t that normal?” They got it; they lived it day in and day out. What they didn’t get was why the system they were entrusting their care to did not fully understand or address their complex needs. I found this disturbing. I realized that little had changed from when I was 19 and watched mother flail around lost in a systemic sea of individualized illness care plans.

Re-visiting the philosophical musings of Friedrich Nietzsche.

Before I can even begin to claim that someday I am going to play a pivotal role in affecting change, I have to recognize where I’ve been, where I’m at, and where I am going.

-I first learned to stand when I was embedded in a family system that was cloaked with chronic illness.
-Walking took place once I removed myself from that system and had a better look at the complex disruption my father’s illness had on every member of our family.
-My running phase took place the day my hands opened John Rolland’s Illness and Disability. The concept of family as patient changed my life.
-Climbing entailed changing careers, getting my masters in family therapy, and pursuing a PhD.
-The dance phase is where I am currently situated. The venue is my research assistantship, and family-centered integrative care models are my jam.

I am a fourth year doctoral research assistant working within a population health study aimed at late-life, chronic illness patients and families. The study, called LifeCourse, http://lifecoursemn.org/ is testing an integrative care model that is based on understanding what matters most to patients and helps them to live according to their values and wishes. Among the study’s goals are improved quality of life and care experience for patients and families, more informed care decisions leading to better use of health care resources, and improved job satisfaction of doctors, nurses and other care team members. I am one of three family systems professionals (clinicians, educators, researchers) on the project. Since I began, I have scoured all aspects of the project from a family and systemic lens. I am continually asking, “Where is the family?”, “How does this impact the caregiver?”, “How are we assessing family?”, and “Who is the patient?” Maybe I am pushing the boundaries a little bit. Maybe I’m driven to help others learn from my experience. The way I see it, if those of us trained in family and systems are not the in the shadows feeding the notions of family-centered care to people in the front lines, who will? Let’s all recognize our chances to re-envision chronic illness care from patient-centered to family-centered. I am certain I have been prepping for this event most of my adult life and I refuse to miss my chance to fly. 

Stephanie Trudeau-Hern, MS, LAMFT is a doctoral student at the University of Minnesota in the Department of Family Social Science - Couple and Family Therapy Program. Her clinical and research interests include family-centered healthcare, integrative behavioral health, family coping with chronic illness, end-of-life issues, and provider self-care within collaborative health care teams. She credits her two little monkeys for being the most influential teachers of life, love, play, and well-being.

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Medical Family Therapy: A Call to Action

Posted By Laura Sudano, Tuesday, May 27, 2014
The journey into HTML formatting started with a random e-mail in November 2013 to Dr. Randall Reitz, Director of Behavioral Sciences at St. Mary's Family Medicine Residency. In the e-mail to Dr. Reitz, I asked how to gather resources for Medical Family Therapists (MedFT) that would be accessible to everyone. In his response, Dr. Reitz presented a challenge, “Let me offer one slightly large tweak ... I suggest we take your idea and create a Medical Family Therapy Wikipedia page.” 

For those of you who are curious or just happen to like big numbers, Wikipedia is a free-access, collaboratively edited Internet encyclopedia with 18 billion page views and 500 million unique visitors a month. There are 30 million articles in 287 languages, including over 4.5 million in English. Although there are some issues with writing quality and accuracy, Wikipedia has an editing process that requires verifiability and a neutral point of view.
 

Fast forward to May 2014, there has been one (1) attempt to publish a Wikipedia page on Medical Family Therapy (see Health Psychology page for a template of the vision for our Medical Family Therapy page). Once it was published, Wikipedia editors criticized the field of MedFT as being a novel concept and without secondary sources added to the page, the page would be deleted. There were more secondary sources added; however, the changes did not suffice as the editors also pointed out that they wanted more than one voice present in the creation of this page. As Woody Allen once said, “If you're not failing every now and again, it's a sign you're not doing anything very innovative.” To further flood this piece with success/failure quotes, I find that the following quote from Deepak Chopra is fitting to not only this situation, but to the larger mission of CFHA, “Success comes when people act together; failure tends to happen alone.”

As such, I am asking that you, the CFHA community, contribute to the greater community and help create this page as an innovative, successful step within our profession. I imagine this page meeting two goals:

1. Allow the MedFT field to be accessible to the public so that people with whom we work or are introduced to us can be informed about who we are and what we do (patients, physicians, and other colleagues); and

2. Inform prospective therapists of what we do and where they can go for training at different stages of their career.

You can contribute! As the collaborative care field continues to grow in not only membership but training and certificate programs alike, I am requesting a call to action: Help re-create the Medical Family Therapy Wikipedia page. If you are reading this thinking, "Laura, I have no idea how to do this Wikipedia thing!" Not to worry. You don't need to be technologically savvy to participate. You can contribute. The requirement is that you bring passion to this creation. 

Here are a few ideas that I believe are the next steps in the creation of our MedFT page:

• Recruit a task force of contributing editors who will write sections for the page.

• For those who are interested, I will send out an online survey to all contributing editors regarding what they feel would be helpful sections for a Wikipedia page (e.g., History, Clinical Approach, Training Programs, Job Opportunities, Controversy in the Field, etc.)

For those who cannot join the task force, I encourage you to e-mail me if you want to volunteer to review the page upon completion and/or have ideas, resources, or other articles.

I am excited about the opportunity we have to reach out to others in the public domain. I am looking forward to your contributions and ideas to help the creation of our MedFT page. If you want to take action together and be part of this innovation, please reach out and e-mail me at laurasudano@gmail.com. I am looking forward to your innovation and collaboration.

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Visiting Aunt Betty: From Primary to Specialty Care

Posted By Kenneth Phelps, Tuesday, May 13, 2014
Over the last four years, the Smith’s quiet existence has been disrupted by a series of obsessions, compulsions, motor tics, and vocal tics. It all started when their seven year old son, Michael, began to blink and roll his eyes rapidly. At first, like most parents, Keith and Tanya Smith assumed this may be related to allergies. As the symptoms persisted and generalized to turning his head from side to side, throat clearing, and shoulder shrugging, the parents knew something more was wrong. Their pediatrician referred them to a neurologist who diagnosed Michael with Tourette Syndrome due to the presence of both simple and motor tics. Shortly thereafter, the Smiths noticed their then thirteen year old daughter, Allie, began taking extended time to get ready in the mornings. When checking on her, they would see her tapping in increments of four, flicking light switches, and insisting on passing items back and forth in a specific visual path. A thorough interview with a mental health professional revealed the presence of obsessive compulsive disorder (OCD). Having discussed these respective diagnoses with specialists and various treatment plans, the Smiths were left wondering how they could support their children, as well as how they could take advantage of the best the medical system has to offer as a means to effective symptom management.  

Four years later, Allie recently obtained an acceptance letter from a major university. She hopes to study psychology, feeling inspired by the work she and her family did with a therapist and psychiatrist. She participated in Exposure and Response Prevention (ERP), a cognitive behavioral therapy for OCD. Michael is now in the throes of puberty, which can be quite challenging for a person living with Tourette Syndrome due to the common increase in tics. While this could be the case, Michael has an artillery of techniques learned through the evidence-based approach of Comprehensive Behavioral Intervention for Tics (CBIT). He now knows how to detect the premonitory urge preceding his tics and engage in his competing responses (or “exercises”) to quail the tics’ impact on his quality of life. While his tics continue their waxing and waning cycle, he is much less bothered by their presence, instead shifting his focus to running track and field.

Two elements core to CFHA were the tipping point to their success So what led the Smith kids to succeed in treatment? Their engagement in care and motivation undoubtedly led to much of their progress. Additionally, two elements core to the Collaborative Family Healthcare Association was the tipping point to their success: 1) involvement of the family and 2) close collaboration. Keith and Tanya Smith were involved in all elements of treatment. For Allie, they learned about how to disentangle themselves from OCD’s grip on their family life. Where they would have originally accommodated OCD’s demands to repeat something in just the right manner or hand an item from left to right at the dinner table, the parents learned to help Allie “talk back to OCD” and realize that her anxiety would eventually subside through exposure to such situations. They reinforced Allie’s gains through labeled praise and special dinners out. These gestures of positive reinforcement were not isolated to Allie. The Smiths also identified factors that worsened their son’s tics, including technology time, speaking about the tics, and when frustrated by chores or academic work. They worked closely with professionals to remind Michael of his exercises and reinforce his engagement in the behavioral plan. The family’s participation in treatments was crucial to ensure each youth had a supportive context to complete the therapeutic work. Family meetings with all parties helped to strike a balance of togetherness and separateness while they combated the influence of OCD and tics in their lives.  

Equally important as family involvement was communication and coordination among professionals. While integrated care is an increasingly common occurrence within the patient centered medical home, what happens to communication when a child or family visits a distant home down the street? Certainly, a therapist located in the pediatric office could have done some of this diagnostic and therapeutic work. However, many pediatricians would want a neurologist or psychiatrist specialized in the complexities of OCD or Tourette Syndrome to be involved until stabilization occurs. This is just what happened for the Smiths. While they were referred to a neuropsychiatric clinic several blocks down from their pediatric office, the specialist team updated the primary care team every 3 sessions about treatment goals and progress to date. This was vital to ensure conflicting recommendations did not occur, medications could be updated in both records (as they didn’t share records at this point), and that Allie and Michael’s care could remain centralized at the pediatric office. Through this collaboration, their pediatrician learned to remind Allie to “wait out the urge to do the compulsion and talk back to OCD.” Once stabilized, she continued to refill Allie’s medication and monitor for relapse. The pediatrician also became more nuanced in asking about premonitory urges and competing responses associated with tics, leading to better identification of other children in the practice who may benefit from behavioral and familial interventions for moderate to severe tic disorders.

 If the pediatric office is the medical home, the specialist office is akin to visiting a relative’s home for the summer. We certainly wouldn’t send our children to Aunt Betty’s home from May to August and never speak to Aunt Betty during this time. Because we care about our children, we need to know Aunt Betty’s perspective on how they are doing, any challenges she is facing, and when the kids will come back home. Similarly, it is vital for communication to flow reciprocally from medical home to specialist home so all are aware of diagnoses, treatment plans, and prognosis. Collaborative care extends far beyond a conjoint interview of a patient that involves both a medical and mental health professional. It is being mindful of the large silos that exist in our system, which require persistence and consistency in communication between involved providers. This generates mutual learning and improved outcomes for the patients and families we serve.  

Kenneth W. Phelps, Ph.D. is an Assistant Clinical Professor in the Department of Neuropsychiatry and Behavioral Science at the University of South Carolina’s School of Medicine. He is a Licensed Family Therapist with a doctorate in Medical Family Therapy. He specializes in the treatment of individuals, couples, and families coping with a variety of chronic medical conditions. Dr. Phelps completed training in CBIT from the Behavioral Institute of the Tourette Syndrome Association. He provides therapeutic services alongside pediatricians, neurologists, and psychiatrists in an academic medical practice.  

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Contact Us

P. O. Box 23980,
Rochester, New York
14692-3980 USA
info@CFHA.net

What We Do

CFHA is a member-based, 501(c)(3) non-profit organization dedicated to making integrated behavioral and physical health the standard of care nationally. CFHA achieves this by organizing the integrated care community, providing expert technical assistance and producing educational content.