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Special Patterns: A Story About Parkinson's Disease

Posted By Roberta Winters and Sylvia McCreary, Tuesday, May 21, 2013
Updated: Wednesday, May 15, 2013
"How incessant and great are the ills with which a prolonged old age is replete.”
- C. S. Lewis

This process of aging intrigues me, and has so for much of my time here.  Our human bodies begin tiny and frail, grow strong, create grand things, and then slowly decrease in energy, size, and (sometimes) ability.   Not so different from the trees outside my window, trees that stand tall, that sway and dance, and eventually fall.  But as I stare out my window at all those trees, some of them stand out to me.  These ones are different in some way.  They are not tall and strong; some of them don’t sway and dance.  No, these are different.  They have some special pattern about them, some uniqueness that both stunts their growth and produces a special character.  Limbs are twisted, contorted into interesting shapes and designs.  These ones cause us to pause. 

Parkinson’s Disease (PD) is one of many neurodegenerative diseases, and among the most common.  It is progressive and results from degeneration of neurons in an area of the brain that controls movement.  Any chronic illness will be a test to the will and determination of the patient, as well as a test to family and friend relationships.  But when PD patients develop within family and friend relationships that are nourishing, this can provide the patient with resources that help with their ability to cope and manage with the progressive symptoms.  

I have had the distinct pleasure to meet one exceptional lady, Sylvia, who is one of those trees with a "special pattern.”  She has taught me that chronic illness is a relational illness, and that the persistence and stability of those relationships surrounding one with PD will help to shape the patterns of healthy coping that emerge.  "You have to have an advocate.  You have to have good instincts as to who to trust and who not to trust [regarding medical care].”  Sylvia discussed with me how difficult it has been for her and her family to find support.  And the costs that come with any chronic illness are staggering.  Costs for prescription medications required for PD patients are high, and often these medications are not paid for by insurance companies (including Medicare).  Insurance companies would rather pay for generic brands that sometimes are not as effective.  

"The worst is not knowing what to expect, and knowing it gets worse,” says Sylvia.  "And being alone.”  Loneliness is a theme that repeatedly comes up with PD patients.  You have to include family members in the illness process, Sylvia noted.  She told me that one of the most helpful things she did was to hold a family meeting, and let her children know what she was facing, and how is was affecting her.  Sylvia said that her children now call her regularly, knowing that this little gesture will help their mother manage with difficult days, and times of loneliness.  

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival.”
- C. S. Lewis

"Friends don’t know what to do, so they do nothing.  It’s a loss.”  One of the most difficult things for PD patients to adjust to is the retreating of friends.  "I understand it,” Sylvia says.  "I certainly understand it.”  But this doesn’t ease the loss, or the pain of isolation.  Care takers of patients with PD can suffer isolation as well.  I have heard care takers say that they just can’t leave their dear one alone, just for a moment even; for fear that their loved one will need them.  Some of the care takers I have met have told me that they didn’t get out much… and that friends eventually stop coming by.  I glance around Sylvia’s kitchen.  Her refrigerator is covered with family photos; her children, their children, someone else’s children.  There are a lot of family photos.  I supposed it reminds her that they are all still there, even when they must go to work and school and busy themselves with life.  

"For after all, the best thing one can do when it is raining is let it rain.” 
- Henry Wadsworth Longfellow

I asked Sylvia, "How long did it take you to accept your illness?”  Sylvia thought, "Ten years.”  The acceptance started when she began to write.  She kept an online journal, and there she would write how she really felt about the illness.  She knew that she could get it all out safely, where no one else would see.  "Art is important,” Sylvia says to me.  She says it helps her to relax.  I look again around her kitchen, walls covered with art.  And little water colors, here and there.  A table sits in the corner, housing brushes that had been dipped in water colors; tools for coping.  She usually has her entire dining table covered in art work, she tells me.  But today, (maybe because I was visiting?) her tools sit in the corner, laid out on a table.  

I’m thinking again about the tress outside my window.  Yes, most of them are tall and strong, waving and dancing.  But today they no longer interest me.  How difficult can it be, to wave and dance, when you are tall and strong.  But to wave and dance when you’re not tall and strong, but seated in a wheelchair, and surrounded by photos of family and pieces of water colors, these things make "special patterns.” Those twists and turns that are embedded into the core, they draw our attention.  

Parkinson’s Disease is a relational disease.  It shows up, unexpectedly, in one person’s body, and somehow manages to spread into the whole family system.  It sometimes causes friends to disappear.  But as Sylvia reminds us, "They don’t know what to do, so they do nothing.”  And it is the loneliness that is left.  What are the pieces of a progressive chronic disease, and how do these pieces fit together?  It will benefit us as providers to see these larger system connections, and to know, while one may carry the disease, the effects ripple outward through the system.  We must always think of such illnesses as relational, and remember that the whole is greater than the sum of its parts.  

"Nana, I wish I could have Parkinson’s Disease, and you can run and play.” 
-Sylvia’s 4 yr old grandson


Roberta is a recent graduate of the Marriage & Family Therapy Master's program at East Carolina University (ECU), and presently enrolled in the Medical Family Therapy doctoral program, also at ECU.  Her research interests include gerontology (biopsychosocial & spiritual issues in aging), and health disparities in the Latino communities.


After being diagnosed with Parkinson's disease 18 years ago, Sylvia McCreary co-founded the Eastern North Carolina Parkinson's support group. As the disease progressed she lost her ability to play the organ and piano, but discovered the joys of painting with watercolors.  She has since produced an annual calendar featuring primarily her artwork. A portion of the proceeds goes toward the support of patients with PD. 


Tags:  chronic illness  Parkinson's Disease 

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A Collaborative Cure for Cancer

Posted By Joshua Fowler, Wednesday, May 15, 2013
Curing cancer, from a biomedical standpoint, is now possible, argues TIME Magazine writer Bill Saporito (2013), and is born from our philosophical beliefs about health care and from the practice of team-based, collaborative care. A bold claim, to be sure, but the truth of his claim depends on the meaning of the word "cure”. There are actually multiple meanings for the word "cure”. Saporito posits this: a cure for cancer is available, but is not simple to produce, nor easy to obtain. Still, it is possible, he says, and what makes it so is the harnessing of a collaborative approach by medical professionals from multiple disciplines.

In Saporito’s article, he writes that cancer "dream teams” can now effectively target and treat cancer, resulting in better and faster results that with more traditional biomedical care may not occur. What lays at the heart of these dream teams is collaborative care. Teams consist of professionals from various disciplines, all working together to help patients in a focused and targeted way. Each member has a purpose and a place and no corners are cut if it means even a chance at a slightly less favorable outcome for the patient. Saporito points out in his article the need to "upend tradition” in order to improve health care overall, not just for cancer. Today, people are living longer and chronic diseases (e.g., asthma, diabetes) are more common than infectious diseases (e.g., influenza, pneumonia). Traditional care that was focused on curing and removing disease may not be adequate for the long, drawn-out battles of chronic disease management. The need to change the way we treat diseases is growing, and it is time, as Saporito states, to part ways with traditional care that is only biomedical.

Perhaps there is something to glean from these cancer "dream teams”. Behavioral health care professionals, who offer biopsychosocial-spiritual care, are uniquely positioned to work alongside other health professionals in support of treatment. Teams of support professionals that work as well as the direct patient care teams that Saporito writes about already exist. At Duke University Hospital, Dr. Cheyenne Corbett, Director of The Duke Cancer Patient Support Program (DSPSP), leads a team of professionals from various disciplines. Though Dr. Corbett’s team is built to provide support rather than direct treatment for cancer, she and her staff take the same approach to health that the dream teams Saporito writes about use.
The need to change the way we treat diseases is growing


Recently, I had the opportunity to co-present with Dr. Corbett at a doctoral class of mine on childhood and adolescent cancers during which Dr. Corbett augmented my presentation with information on adult cancers, the main focus of the DCPSP. Further, she provided our class with an in-depth look at her team, how she operates, and why the DCPSP is accomplishing its mission "to create a humanistic environment for adults with cancer, as well as their family members, during the stress entailed in diagnosis, treatment, and after-care.”

Dr. Corbett, a trained marriage and family therapist, has a unique understanding of what it takes to support cancer patients to produce better outcomes for them. She and her team have the primary responsibility of acting as liaisons between patients and medical staff, providing hospitality to patients and families in exam rooms, and advocating for patients by helping them understand the resources available to them, including all of the services the DCPSP provides. If a patient wants family involved or a close friend to be nearby to provide support, the team works to make it happen. Professionals work as a team and check in with one another to ensure good care for patients. They look for gaps in patient care and work to close those gaps. The DCPSP is set up to take advantage of the collaborative view of problem-solving. Family is incorporated at every step along the way, and services such as family therapy are provided as part of care. Duke has a new cancer treatment center where the DCPSP is housed and even the building design was made to keep families together and to keep patients at the center of treatment.

Collaborative care, as Saporito writes, is becoming a vital part of healthcare not only between professionals but between patients and providers. As biopsychosocial providers, we should consider taking a look at how are we are encouraging family involvement and cross-disciplinary collaboration in our respective settings. If you are a patient or a family member, you may want to consider how you can advocate for cross-discipline collaboration in your treatment or the treatment of your loved one, and how you can stay involved in the overall treatment and support of your family member or friend who is a patient. These considerations allow us to examine if we are working in a way that is actually collaborative.

Saporito, B. (2013). The conspiracy to end cancer. April 1st, 2013, TIME Magazine. Retrieved from http://healthland.time.com/2013/04/01/the-conspiracy-to-end-cancer/


Joshua Fowler is a recent graduate of the marriage and family therapy masters program at East Carolina University.

Tags:  cancer  collaborative care 

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Be Conscious of What the Big Rocks Are in Your Life

Posted By Julie Schirmer, Tuesday, May 7, 2013
This piece is a reprint of a post from the STFM blog, a regular blog produced by members of the Society of Teachers of Family Medicine (http://www.blog.stfm.org/). Reprinted with permission.

Although we should do this every day, periods of transition beckon us to examine what’s important to us as we ask ourselves, "Is this really what we want to do? Are we really living our values?” Medical students will soon move to residency programs and graduating residents will be off to their first jobs in medicine. At the recent STFM Annual Conference in early May relatively new faculty began one of the STFM fellowship programs to enhance their skills as leaders or as new behavioral science/family systems faculty.

At times like this, I am reminded of the "jar of rocks” story that I’ve come across in leadership courses and have used in teaching: A philosophy professor enters her classroom with a large, wide-mouthed glass jar and several bags of items. She asks for a student volunteer to fill the jar, who then places one to two inch rocks into the jar to the very top of the brim. The professor then asks the students if it is full. The students agree that it is full.

She asks another student to pour a bag of small pebbles up to the top of the jar. They flow between the open spaces between the rocks. She again asks the class if the jar is full. The students agree.

She then pours sand between the spaces, always finding more spaces to fill up the jar. She then states, "This jar represents your life, the large rocks represent everything that is most important to you, such as work, play, family, and love. The smaller rocks are necessary but of lesser importance. Everything else is just sand. The important thing is to be conscious of what the ‘big rocks’ are in your life. Make sure you fit them into your jar before placing anything else in, or they won’t fit. Take time to nurture, support and develop the ‘big rock’ areas, then the ‘smaller rocks’ before putting anything else in your jar.” To this original story, I have added the professor recruiting students to help her. For with helpers around, the rocks don’t seem so heavy and the process has the potential for being more fun.

I am in transition myself and wonder how I am going to fit new responsibilities into an already full life and schedule. Starting May first, I begin my journey as the new Director of the STFM Behavioral Science Family Systems Educator Fellowship (BFEF) Program, along with the 15 new educator fellows from family medicine residency programs all around the country. The fellowship is one of my "big rocks.” At this later stage in my career, it’s important to nurture and support the next generation of behavioral science faculty leaders in family medicine. It’s that "generativity” thing! I am helped by a large community of able colleagues, including STFM staff and seasoned behavioral science and family medicine educators who serve as mentors, fellowship faculty and steering committee members. This prevents me from feeling overwhelmed as to everything that I have to do for the fellowship on top of my other work and life responsibilities.

Medicine is a continually changing field, which can be exciting and overwhelming - often at the same time. Wherever you are in your life or career, take time to routinely visit and examine the ‘big rocks’ in your life and strive towards valued living. Listen to your body, mind and spirit. If you are feeling "off balance”, make sure the rocks are in their right places. Recruit colleagues and other members of your "team” to help lift the weight off your shoulders and to create a better world.

I welcome others' stories about recommendations for living the most vital and meaningful life and about maintaining balance in this fast-paced, internet-heavy world.


Julie Schirmer, LCSW is Director of Behavioral Health at the Family Medicine Department of Maine Medical Center and Assistant Director of the Family Medicine Clerkship at Tufts/Maine Medical Center School of Medicine. She is Co-chair of the North East Regional Integrated Care Learning Community, Past President of the Family Medicine Education Consortium, and Director of the Behavioral Science/Family Systems Educator Fellowship of the Society of Teachers of Family Medicine. She is author and co-editor of Behavioral Health in Primary Care: A Global Perspective (Radcliffe, 2010).

Tags:  self-care 

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Caring for the system: The importance of integrated care for patients and loved ones

Posted By Aubry N. Koehler, Tuesday, April 30, 2013

This past fall, the European Heart Journal published an article on the increased risk of depression, anxiety, and suicide for spouses of partners who had suffered heart attack within the past year, when compared to spouses of partners with other hospitalizations (Fosbøl et al., 2012)

To family-oriented clinicians, this comes as little surprise. The burden of medical crisis is carried not only by patients but also by their families and communities, especially when need for caregiving requires shifts in household and occupational roles. Beyond the biological and logistical components, patients and families must also cope with accompanying emotional, psychological, social, and spiritual ramifications of crisis which can manifest as feelings of confusion, hopelessness, fear, and isolation. And, as Fosbøl and colleagues suggest, there may be something particularly distressing about a loved one’s heart failing him or her.

While we have been trained to look at the systemic impact of health and illness, the medical contexts in which we work are just beginning to adopt this lens. The rise in the popularity of patient-centered medical homes where patients can receive their medical and behavioral health treatment from collaborating providers under one roof is a move towards health care that considers the biopsychosocial needs of the patient.

However, even adoption of a systemic lens in health care is taking place within an individualist paradigm. Electronic health records are not set up for charting relational cases and insurance companies require providers to bill under a single identified patient.

Does this sound like
a revolution to you?

A paradigm shift?

I hope so.

 But let us not scapegoat the medical context. The individualist paradigm pervades the majority of US institutions and is a paradigm that we and the public generally endorse and enact in our day-to-day lives. As consumers, I believe we are not only subject to institutional constructs, we also have a hand in how institutions are constructed and adapted. We all have some degree of agency—albeit, less or more depending on our socioeconomic power and privilege—in changing health care through the policies we support, the health care resources for which we advocate, and the ways in which we access these resources.

The fact that national media reported Fosbøl and colleagues’ findings is perhaps an indication that this is news to the public. Consumers may not consider the ways in which medical crises in family members can impact their physical and emotional wellbeing. Without structures in place to offer relational treatment, consumers may not think to request family support. Further, even if they do recognize a need for behavioral health support, it is unlikely that family members of ill loved ones will have the energy or time to advocate for themselves in the midst of crisis.

So, what can we do as practitioners to help patients and families access medical and behavioral health support? We can start by continuing to carry our own systemic lens into all of our encounters with patients, families, providers, and medical staff. We can educate patients and families about the relational impact of illness in a loved one and connect them with resources, as needed. We can also be a part of advocating for changes in medical and behavioral health care delivery at the administrative level in the medical contexts where we work and on the level of the state and federal policies that will best support these changes.

We still have a great deal of work to do in substantiating our relational approach to health care. While the merits of this approach may seem obvious to us and others within our field, we need to show everyone—from policy makers and insurance company executives to the general public— how needed this kind of approach is and the positive health care outcomes to which it can and does contribute.

Does this sound like a revolution to you? A paradigm shift? I hope so. Imagine a world in which our medical contexts are set up to treat the family as a whole. Where family members are educated about the relational impact of illness in a loved one on their own wellbeing and not only have resources available to them, but feel comfortable reaching out and accessing those resources. Better yet, imagine a world in which those resources are offered automatically to families experiencing medical crisis, so they can then use their agency to opt in or out of receiving them. Let us as practitioners help to envision and evolve a system that reaches out to the whole network of hearts that makes up our world.


Reference

Fosbøl, E. L., Peterson, E. D., Weeke, P., Wang, T. Y., Mathews, R., Kober, L., Thomas, L., Gislason, G.H., and Torp-Pedersen, C. (2012). Spousal depression, anxiety, and suicide after myocardial infarction. European Heart Journal, 34, 649-656. doi:10.1093/eurheartj/ehs242

 


Aubry Koehler, MA, LMFTA, is a first-year Medical Family Therapy doctoral student at East Carolina University in Greenville, NC. She has interned as a behavioral health specialist in integrated care settings over the past two years and is especially interested in the impact of chronic illness on the family system, culturally sensitive care, and closing health disparities. Aubry earned her Master’s of Arts in Marriage and Family Therapy from Antioch University New England in 2012.

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Intimate Partner Violence in Integrated Care

Posted By Jonathan Wilson, Tuesday, April 23, 2013

When I began my training as a marriage and family therapist, I never imagined I would work in a healthcare setting. My misguided preconceptions about the separation of mental and biomedical treatment clouded my ability to truly provide therapy from a biopsychosocial lens. Since the first semester of my master’s program, my research interests seemed to gravitate toward domestic violence and its impact on couple and family relationships. One of the recommendations included in the discussion section of my master’s thesis, which examined the influence of attachment and aggression in couples, was for MFTs to include attachment screenings during the intake process to aid in identifying women experiencing intimate partner violence (IPV). Even then, I believed in the value of screening for IPV, but never consider the role of screening outside the box of the traditional family therapy setting.

Collaborative healthcare providers treat diverse groups of patients on a daily basis as part of an integrated team. As patients continue to present with various comorbid medical and psychosocial problems, which mutually influence one another, the need for provider competence in responding to psychosocial issues is sizeable. Patients experiencing IPV represent a particularly vulnerable population to which family-oriented clinicians and systemic therapists alike can provide help and resources. The process of identifying and responding to IPV in integrated care is often difficult to maneuver, and for some providers, when it comes to their patients’ experiences with IPV, sometimes it is easier not to ask than to ask and not know what to do.

IPV is a serious public health problem (Garcia-Moreno, Jansen, Ellsberg, Heise, & Watts, 2006) with substantial consequences for women’s physical, sexual, and mental health (Campbell, 2002). One source indicates that more than 25% of women experience IPV at some point in their lives (Black et al., 2011). Despite the prevalence of IPV and recommendations for universal screening from various professional organizations and the Institute of Medicine (IOM 2011), most providers choose not to screen their patients for IPV victimization (Jonassen & Mazor, 2003). Some sources indicate that only 1.5% to 12% of female patients were screened about possible physical abuse from their partner (Caralis & Musialowski, 1997; Hamberger, Saunders, & Hovey, 1992).
Choosing not to seek out and lend aid to women in abusive relationships would be contradictory to our calling as healthcare providers.

Healthcare providers have tremendous potential to identify women experiencing IPV and to lend aid. Their cautionary positions toward IPV screening seem to be based upon concerns that screening for IPV may (a) be overly invasive; (b) isolate patients; and potentially (c) increase violence (Todahl & Walters, 2011). Although most physicians receive training on IPV in medical school (Jonassen & Mazor, 2003), barriers to IPV screenings remain, such as lack of provider education regarding IPV (Waalen et al., 2000), and lack of self-assessed competence in identifying IPV (Jonassen & Mazor, 2003).

Women experiencing IPV have identified barriers as well – most of which pertain to the screener and screening environment. Specifically, women tend to prefer to be screened by a woman, someone of the same race, a provider aged 30 to 50 years, and without anyone present (Thackeray, Stelzner, Downs, & Miller, 2007). It is probable that many physicians are unaware of these patient boundaries. I contend that collaborative healthcare providers have the potential to break down these barriers that providers and patients have constructed.

Integrated care settings are ideal for identifying and providing assistance to women experiencing IPV. Physicians, nurses, mental health workers, medical assistants, and every other provider within the system have the ability to "bridge the gap,” so to speak, between the identification of women experiencing IPV and responding appropriately with necessary resources. Women are typically screened via a formal written assessment or a single question on their intake paperwork. The American College of Obstetrics and Gynecologists (ACOG, 2012, pg. 3) compiled a list of screening protocols based upon the preferences of their patients regarding written screenings:

  • Screen for IPV in a private and safe setting with the woman alone and not with her partner, friends, family, or caregiver.
  • Use professional language interpreters and not someone associated with the patient.
  • At the beginning of the assessment, offer a framing statement to show that screening is done universally and not because IPV is suspected. Also, inform patients of the confidentiality of the discussion and exactly what state law mandates that a physician might disclose.
  • Incorporate screening for IPV into the routine medical history by integrating questions into intake forms so that all patients are screened whether or not abuse is suspected
  • Establish and maintain relationships with community resources for women affected by IPV.
  • Keep printed take-home resource materials such as safety procedures, hotline numbers, and referral information in privately accessible areas such as restrooms and examination rooms. Posters and other educational materials displayed in the office also can be helpful.
  • Ensure that staff receives training about IPV and that training is regularly offered.
Another group of researchers indicated that women preferred a patient-centered screening approach more than a written screening approach (McCord-Duncan et al., 2006).

At the bottom of this blog entry, I’ve included a few helpful links to consider for those willing to screen for IPV among their patients. The "HITS” domestic violence-screening tool (Sherin, Sinacore, Li, & Zitter, 1998) is a simple 4-item screening tool with demonstrated reliability and validity (see Sherin et al., 1998). For a thorough list of screening tools available, I would encourage you to review the systematic review published by Rabin, Jennings, Campbell, & Bair-Merritt (2009), which summarized IPV screening tools tested in healthcare settings and discussed psychometric data of each tool.

I’ve also included contact information for the National Domestic Violence Hotline, which, on the date of this blog entry, is open 24 hours a day. Providers are encouraged to make themselves aware of the local resources available in their regions – particularly shelters for battered women and any local resources to provide further assistance. Representatives from the local shelters or family violence centers are typically more than happy to come and give a formal or informal talk about what resources are available in your community.

Although there is much still to be learned about IPV screening, we are knowledgeable enough that choosing not to seek out and lend aid to women in abusive relationships would be contradictory to our calling as healthcare providers. Without our assistance as physicians, nurses, systemic therapists, or any other healthcare provider, the violence experienced by these women will continue. Family-oriented clinicians, especially those in integrated care settings, can pave the way for higher identification rates of IPV and, more importantly, increased aid for women experiencing IPV.

What screening methods do you use in your practice? How is collaboration a part of your protocol? Did you have an experience with IPV in your practice that was transformative in the way you work with patients experiencing IPV? If so, what happened and what did you learn through that experience?

Resources

Link: "HITS” Screening Tool

National Domestic Violence Hotline: 1-800-799-SAFE (7233) or www.thehotline.org

 

References

ACOG. (2012). Intimate partner violence: Committee opinion no. 518. Obstetrics & Gynecology, 119, 412–417.

Black, M. C., Basil, K. C., Breilding, M. J., Smith, S. G., Walters, M. L., Merrick, M. T., Chen, J., et al. (2011). National intimate partner and sexual violence survey (NISVS): 2010 summary report. Atlanta, GA.

Campbell, J. C. (2002). Health consequences of intimate partner violence. The Lancet, 359, 1331–1336. doi:10.1016/S0140-6736(02)08336-8

Caralis PV, Musialowski R. (1997). Women’s experiences with domestic violence and their attitudes and expectations regarding medical care of abuse victims. Southern Medical Journal, 90, 1075-1080. doi:10.1097/00007611-199711000-00003

Garcia-Moreno, C., Jansen, H. A. F. M., Ellsberg, M., Heise, L., Watts, C. H., & Study, W. H. O. M. (2006). Prevalence of intimate partner violence : Findings from the WHO multi-country study on women’s health and domestic violence. Lancet, 368, 1260–1269. doi:10.1016/S0140-6736(06)69523-8

Hamberger LK, Saunders DG, Hovey M. (2002). Prevalence of domestic violence in community practice and rate of physician inquiry. Family Medicine, 24, 283-287.

Institute of Medicine. (2011) Clinical preventive services for women: closing the gaps. Washington, DC: The National Academy of Sciences.

Jonassen, J. A., & Mazor, K. M. (2003). Identification of physician and patient attributes that influence the likelihood of screening for intimate partner violence. Academic Medicine, 78(10), S20–S23. doi:10.1097/00001888-200310001-00007

McCord-Duncan, E. C., Floyd, M., Kemp, E. C., Bailey, B., & Lang, F. (2006). Detecting potential intimate partner violence: Which approach do women want? Family Medicine, 38(6), 416–22. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/16741840

Rabin, R. F., Jennings, J. M., Campbell, J. C., & Bair-Merritt, M. H. (2009). Intimate partner violence screening tools: a systematic review. American Journal of Preventative Medicine, 36(5), 439–445. doi:10.1016/j.amepre.2009.01.024

Sherin, K. M., Sinacore, J. M., Li, X., & Zitter, R. E. (1998). " HITS ” A domestic violence screening tool for use in the community. Family Medicine, 30, 508–512.

Thackeray, J., Stelzner, S., Downs, S., & Miller, C. (2007). Screening for intimate partner violence. Journal of Interpersonal Violence, 6, 569-670.

Todahl, J., & Walters, E. (2011). Universal screening for intimate partner violence.: A systematic review. Journal of Marital and Family Therapy, 37, 355-369. doi:10.1111/j.1752-0606.2009.00179.x

Waalen, J., Goodwin, M. M., Spitz, A. M., Petersen, R., & Saltzman, L. E. (2000). Barriers and Interventions. American Journal of Preventative Medicine, 19, 230–237. doi:10.1016/S0749-3797(00)00229-4

 

Jonathan Wilson
Jonathan Wilson is a licensed marriage and family therapy associate and provisional certified family life educator. He received his master’s degree in Marriage and Family Therapy from Oklahoma State University and is currently enrolled in the doctoral degree program in Medical Family Therapy at East Carolina University. His interests include intimate partner violence, psychopathology/psychopharmacology, and family therapy training outcomes.

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We’re Better Together: Shared Experience of Health, Illness and Care

Posted By Elizabeth Patrick, Tuesday, April 16, 2013

Each morning for the past two years, my friend and I have taken our dogs to the neighborhood park. On those mornings, rain or shine, we share the park with a Vietnamese couple in their sixties. We have come to expect to see one another every day and have begun our own unspoken ritual of waving and exchanging a pleasant "good morning.” The couple comes to the park to exercise and over the years they have captured my heart and attention because of the apparent love and care that they have for one another. I have had the privilege to witness how much this couple values mutual health-positive behaviors.

Let me describe some of the sweet moments I have witnessed from this couple. First, the husband seems to struggle with a health-related challenge and is in a wheelchair most of the time. He appears to count on his wife for assistance and care. I have become familiar with their routine, as I’m sure they have become with ours. They walk from their home which is about a quarter of a mile away. Sometimes the wife pushes the husbands’ wheelchair, other times she is stabilizing him on one side as he walks
for a short time in a slow and concerted manner.

For some couples
who face chronic
illness, traditional
gender roles and
processes are
challenged and
often redefined,
sometimes becoming
more mutual or
egalitarian
.

Once they arrive at the park, they approach a cement bench that they use as a sort of "home base”. The wife begins to work with the husband as he gets his physical activity going. He spends about 10-15 minutes on his feet and while holding onto his wife, he bends, squats, steps and stretches. His exercise comes first. Once he has finished, he takes a seat on the bench or in his wheel chair, relaxes, and begins to encourage and observe his wife as she starts her morning workout. She has a number of workout courses that she has created at the park, keeping things relatively new and fresh for herself. She may do some push-ups on an incline, walk up and down a steep hill, or speed-walk up and down the front of the park. As she works out, her husband is close by, watching, smiling, enjoying his wife’s exercise process. Imagine also that this is a couple that is soft and patient with one another. Never upset, always encouraging.

Even as I recall what I observe every morning I find myself smiling at the couples’ love and care towards one another. However, I also know that when one spouse becomes sick a lot changes in a relationship. Often the person who gives care can experience lack of personal health as they put the ill spouse first. However, the couple at the park has shown me that there can be joy and connection through a shared experience of health, illness and care. This has been particularly valuable for me as I am working on research related to a relational orientation towards illness, in other words, shifting from a "my” illness to an "our” illness orientation.

Researchers (Acitelli & Badr, 2005; Burwell, Templeton, Kennedy, & Zak-Hunter, 2008; Dankoski & Pais, 2007; McDaniel & Cole-Kelly, 2003) have highlighted that female spouses easily adapt to a relational orientation of illness. As a result, this process has the potential to further burden the female partner when disparities in power between males and females in the relationship are not attended to. When females, or the well partner, take on a greater degree of relational responsibility than their spouse, it is common for relational strain to increase. Therefore, it is important to recognize and highlight that a process within the relationship must continually occur so that each spouse takes a role in the mutual processing of ‘our’ illness experiences (Kayser, Watson, & Andrade, 2007).

Wives who coped with their chronic illness by confronting challenges and expressing feelings and experiences openly had greater overall marital satisfaction, as did their husbands (Badr, 2002; Acitelli & Bahr, 2005). This same "active” coping from the wife is associated with greater marital satisfaction for ill husbands as well. From a gender lens, this suggests that the couple is not mutually engaged in an "our” orientation towards illness. Instead, the illness experience is being shaped by gendered power processes that place the primary relational burden on the female partner.

For some couples who face chronic illness, traditional gender roles and processes are challenged and often redefined, sometimes becoming more mutual or egalitarian (Dankoski & Pais, 2007). Whether couples progress to more egalitarian styles of coping or revert to more traditional gendered patterns, flexibility is a key issue. In fact, Cross et al., (2001) found that inflexible gender roles often lead to difficulty and distress for couples and families and can potentially lead to separation or even divorce, especially when the female partner is the one who becomes ill.

Although I only see the Vietnamese couple for about an hour each day and only observe their exercise process, I feel as if I get to witness a care-giving/care-receiving relationship that is oriented around the couples’ experience of health and illness. I see flexibility in their gender roles, mutual support, and care. I find that I look forward to seeing my park friends every morning. I am encouraged by them.

Acitelli, L. A., & Badr, H. J. (2005). My illness or our illness? Attending to the relationship when one partner is ill. In T. A. Revenson, K. Kayser & G. Bodenmann (Eds.), Couples coping with stress: Emerging perspectives on dyadic coping. Washington, DC: American Psychological Association.

Badr, H., Carmack, C. L., Kashy, D. A., Cristofanilli, M., & Revenson, T. A. (2010).

Dyadic coping in metastatic breast cancer. Health Psychology, 29(2), 169-180. doi: 10.1037/a0018165

Burwell, S. R., Templeton, B., Kennedy, K. S., & Zak-Hunter, L. (2008). Feminist-informed medical family therapy principles and techniques across biopsychosocial systems levels for younger women with breast cancer and their partners. Journal of Feminist Family Therapy, 20(2), 99-125.

Dankoski, M. E., & Pais, S. (2007). What's love got to do with it? Couples, illness, and MFT. Journal of Couple & Relationship Therapy, 6(1), 31-43.

Kayser, K., Watson, L. E., & Andrade, J. T. (2007). Cancer as a "we-disease": Examining the process of coping from a relational perspective. Families, Systems, & Health, 25(4), 404-418. doi: 10.1037/1091-7527.25.4.404

McDaniel, S. H., & Cole-Kelly, K. (2003). Gender, couples, and illness: A feminist analysis of medical family therapy. In L. B. Silverstein & T. J. Goodrich (Eds.), Feminist family therapy: Empowerment in social context (pp. 267-281). Washington, DC: American Psychological Association.

 

Elizabeth Patrick
Beth Patrick is a third-year PhD MFT student at Loma Linda University and has worked at the Loma Linda Transplantation Institute for the past two years. She has also spent a year working in Primary Care as a part of an integrated healthcare team. Her professional interests include medical family therapy, teaching and mentorship, and socially just/contextual practices.

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How Care Provider Behavior Impacts Dementia in Their Loved Ones

Posted By JoAnn Tschanz and Randall Reitz, Tuesday, April 9, 2013

JoAnn Tschanz, psychologist at Utah State University, recently published research connecting specific family caregiver strategies with decreased dementia in their loved ones. Dr Tschanz discusses her groundbreaking study in this interview with Randall Reitz.

 

Randall Reitz: Your data indicate that people with dementia tend to have better outcomes if their family caregivers use certain coping strategies. The coping strategies that made a difference were: problem-focused coping, counting blessings, seeking social support, and wishful thinking. What are these coping strategies and how do you believe they translate to improved outcomes for people with dementia?

JoAnn Tschanz:These coping strategies are from a larger set of eight strategies in what researchers indicate either address the source of the problem (problem-focused) or seek to manage distress. Counting blessings would be similar to looking at the bright side of things, seeking social support would be akin to talking out your problem with a friend, and wishful thinking would be similar to hoping for the best.

The majority of the strategies did not predict the rate of cognitive or functional decline in the person with dementia. Problem-focused coping and seeks social support predicted slower cognitive decline in dementia participants; problem-focused coping, seeks social support and wishful thinking were associated with slower functional decline. However, because we also saw evidence that use of the coping strategies were associated (e.g., someone who used problem-focused coping may also have a tendency to use the other coping strategies as well), we ran additional statistical models to see which were independent predictors. This is where caregiver problem-focused coping was the strongest predictor of slower cognitive and functional decline in the person with dementia.

Although we do not yet know how problem-focused coping was associated with slower decline, we hypothesize this could reflect a caregiver who is able to adapt flexibly to meeting new challenges and tries to solve problems as the dementia progresses. For example, a troubling behavior (wandering) might emerge. A caregiver using problem-focused strategies might operate under the hypothesis that the patient doesn't recognize their surroundings and so displays, familiar items like family pictures and other decorations that the patient recognizes. Other possibilities include engaging the patient in stimulating activities as other research has found an association between cognitively stimulating activities and slower progression of dementia.

RR:What surprised you most in your analysis?

JT: We hypothesized that problem-focused coping was associated with slower progression and our findings were consistent with that hypothesis. However, we also thought that other coping strategies like Avoidance and Blames Self or Others would be associated with worse outcomes, but this was not the case. These strategies were not associated with rate of cognitive or functional decline.

RR: Your sample comes mostly from one county in rural Utah, do you have any concerns that your data are community-specific?

JT: This is a great question. Although our sample consists of residents of one county in Utah, in some ways our data may actually generalize more broadly to others since the study was based on a population-based sample rather than a clinic-based sample. The latter tend to include individuals who are younger, more highly educated, and those who may have more severe symptoms. That said, the majority of our participants were Caucasian and averaged over 12 years of education, so the results may not generalize to populations with greater ethnic or educational diversity. Studies in other samples are needed to determine whether our results are replicated.

RR: How do you hope your findings will impact the field of collaborative family healthcare?

JS: Many health care providers have not thoroughly looked to the care environment as a place to intervene, other than to help reduce caregiver distress and stress-related illnesses. Our findings suggest that the care environment may be a place to intervene to promote the highest level of functioning in the person with dementia. In this way, caregivers could be trained to problem solve various care management issues that arise, and feel empowered to make a difference in the care of their loved ones.

Rather than looking at dementia as a progressive condition where the caregiver and patient are helpless, ideally, the caregiver and patient could take an active role to work with their health care providers and devise a care management plan. In that plan might be ideas to address challenges that commonly arise for many patients, and likely would include use of formal resources available in the community.


Our findings suggest that the care environment may be a place to intervene to promote the highest level of functioning in the person with dementia.

RR: How do you see your research evolving and in what direction would you like the field to go?

JT: We've found other aspects of the care environment (such as closer relationships and participant engagement in stimulating activities) to be associated with overall better cognitive and functional abilities in dementia. We'd like to follow-up our results to get a better understanding of potential mechanisms and whether they're also predictive of important clinical milestones such as severe disability or institutionalization. Additionally, our results are observational only so we cannot draw cause-effect conclusions.

Ultimately, I'd like to develop an intervention and test that intervention in a study that randomizes treatment to participants and has an appropriate control group so we can draw firmer conclusions from this line of research. I would really like to see the field emphasize non-medical and non-pharmacological approaches to treating all aspects of dementia and really engage the caregiver as a primary source participant in the patient's treatment.

RR: JoAnn, thanks for your contributions to collaborative family healthcare and to the Families and Health blog!


 

JoAnn Tschanz

JoAnn Tschanz is Professor in the Department of Psychology and faculty in the Center for Epidemiologic Studies at Utah State University. She is a clinical neuropsychologist and has studied risk factors for Alzheimer's disease and other dementias as well as factors that influence the clinical expression of dementia after disease onset. She has published over 80 papers in scientific journals and books, and is the recipient of grant funding from the National Institute on Aging.


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Why do men divorce their sick wives?

Posted By Aimee Galick, Thursday, April 4, 2013

I just finished a MedFT clinical internship at the Loma Linda University Transplantation Institute where I worked with couples in which one member was severely chronically ill and needed a kidney or liver transplant. Using SERT as my organizing theory, I have a heightened awareness of how emotional and tangible support, caregiving, and impact of the illness on the family typically differs depending on whether the patient is a man or woman. A recent study by Glantz et al. (2009) affirmed these ideas as it documented divorce rates in patients diagnosed with a brain tumor, cancer, or MS and found that 11.9% of marriages ended after the introduction of these serious illnesses and in 88% of these separations the ill person was the woman, compared to only 12% of men.

"Partner abandonment,” the researcher’s label for the phenomenon, resulted in poorer health outcomes in patients, more hospitalizations, higher use of anti-depressants, and less compliance with treatment regimens. This study supports the notion that relationships are important to both physical and mental health and it also confirms what I have seen in my practice with severely ill patients - women are more dedicated to the care of their sick partners. Why does this happen?

I have been involved in a clinical research group led by Dr. Carmen Knudson-Martin and Dr. Douglas Huenergardt at Loma Linda University. The group developed a model of couple’s therapy, Socio-Emotional Relational Therapy (SERT), which centralizes power in the conceptualization of influence, responsibility, and support in intimate relationships (Knudson-Martin & Huenergardt, 2010).

Gender is one of the more obvious sources of power, or lack thereof, but we also look at how culture, SES,
religious beliefs, and the intersection of these social categories influence power within relationships and of partners in relation to society. We believe that power differentials between partners prevent them from being able to actualize mutually supportive relationships and
that dominant ideas about what it means to be male and female contribute to this imbalance. Looking at the
gender difference in partner abandonment with a
SERT lens I have an idea about why this occurs.
I think for most people in our Western society there is an entitlement to personal happiness over the needs and happiness of others.

So why should anyone suffer to care for a sick person?

I think for most people in our Western society there is an entitlement to personal happiness over the needs and happiness of others. So why should anyone suffer to care for a sick person? I have heard things like, "this isn’t what I signed up for, she/he is not your responsibility, and you need to do what is best for you.” No one in this culture wants to be a burden, but I think there is a gender difference. I frequently hear women who are sick, say they feel bad for being a burden to their loved ones and this is one of their greatest sources of stress.

Men, on the other hand, don’t report this as often and seem to have a sense of entitlement to receive care when they are ill. There do not appear to be the same societal pressures on men to stay with an ill partner, but a woman who leaves a sick man? What is wrong with her! What a terrible person!! These strong messages about male and female responsibilities often place a heavier burden and more pressure on women. I think men may abandon their sick partners out of a sense of entitlement to not being bogged down. I also think that fear about inadequacy around caregiving and their ability to cope with the level of stress that comes with a loved one’s serious illness plays a major role.

This fear of inadequacy may play a larger part than the sense of entitlement, but I think it may be easier for men to go to the place of "this isn’t what I signed up for” rather than "I am really scared, I don’t know how to be a caregiver, and I don’t want to get closer to someone I will likely end up losing.” Another contributing factor is that when a female partner becomes sick, she does not have as much time and energy to devote to caring for the relationship and her partner – so things fall apart.

The couples I see are often in the beginning stages of adjusting to having a serious illness intrude into their partnerships, which allows me to intervene often before the illness has done serious damage. At this crucial point in the illness trajectory, couples have not yet considered what motivates their behavior in relationships. I often use my personal and clinical experiences around gender differences which facilitates the joining and that is crucial for the next step.

For men, I give voice to what I think they can’t because it is too vulnerable. I voice the presence of fear, not-knowing, feeling inadequate, and doubting their abilities to handle this. I also voice how I think they wish they could be in relationship. This allows us to go to a place where we can discuss ideas in society which have likely influenced their behaviors, thoughts, and feelings within relationships. This can take away the shame and guilt they have about being relationally inadequate. Having a strong therapeutic relationship is key to setting the tone in which this vulnerable conversation can take place and new possibilities can be explored.

Some people might be asking themselves, what about the women? How can we help them in this process? Good question. It would be incongruent with my beliefs about power to follow this post with suggestions about how to work with women because I don’t believe they have the same power as men to influence others. I would be happy to write another post on the issue if there is a demand for it.

Despite the many difficulties couples can encounter, I often find the introduction of illness can be positive in that it can bring partners closer than they ever imagined. This happens when instead of one partner turning toward the illness, both partners turn toward one another. I feel so privileged to be a part of this amazing process!

If you wish to learn more about SERT and mutually supportive relationships you can visit our website at equalcouples.com or contact me at agalick@llu.edu.


Reference

Knudson-Martin, C., & Huenergardt, D. (2010). A socio-emotional approach to couple therapy: Linking social context and couple interaction. Family Process, 49(3), 369-384. doi: 10.1111/j.1545-5300.2010.01328.x

 

Aimee Galick
Aimee Galick, is a doctoral candidate at Loma Linda University.She identifies as a Feminist Medical Family Therapist. Her main interest is in how the larger social context affects the intersection of health and families. Most of her research has centered on how contextual influences such as gender and culture affect intimate relationships, the process of therapy, and experiences with illness.She is passionate about relationships characterized by mutual attunement, mutual influence, shared relational responsibility, and shared vulnerability. She administrates a blog (equalcouples.com) on the topic of mutuality in intimate relationships.

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Opposites Attract: My Foray into Collaborative Healthcare

Posted By Annie Bao, Wednesday, March 27, 2013

Starting as a therapist in collaborative healthcare without any formal education or training in medical family therapy is like going on a blind date, which in actuality is your first date ever. This is along the same lines of where my journey began. From what I had heard of the potential for a tremendous (working) relationship to develop, it appeared to be a good path for me to pave as a clinician trying to carve out a rewarding career. My third-party knowledge of the system I was about to meet sounded like the ideal match in core beliefs and attitudes about how to support patients in their healthcare. I hesitated about my decision to walk into this situation with little knowledge about the process, but I was hopeful that there would be longevity in this adventure with something so innovative. 

Fear of seeming incompetent coursed through my system and excitement about how this may impact my future was an electrifying sensation. When I began training as a marriage and family therapist, most of my perceptions of its practice were derived from media portrayals (e.g., Frasier, Sopranos, & What About Bob?). When I was chosen to be a fellow in collaborative healthcare, I again relied on entertainment depictions (and published research, of course) to guide me through a general understanding of the environment I was about to immerse myself in. So armed with the encouragement of family, friends, and mentors along with my Grey’s Anatomy framework, I…was…ready.  

Collaborative healthcare was the perfect marriage for the pursuit of my aspirations
Something about collaborative healthcare has always intrigued me. Was it that I was the daughter of a physician, who spent my formative years with him, his partner, nurses, and CMAs at their practice? Was it that I myself had ambitions to be a physician that would help alleviate pains of ailing patients like my father could with such humility and grace? Was it my volunteer work at the hospital or with the underserved communities, limited from access to decent healthcare? Or was it having negative encounters with healthcare systems during the care of my loved-ones? Who can say, I’m certain that it is a combination of all of those factors and more. But, I know that passion for medicine and therapy live deep within me and collaborative healthcare was the perfect marriage for the pursuit of my aspirations. 


With no prior experience or training in collaborative healthcare settings, I was the least likely candidate to be chosen for a position to work in the field. So, I was admittedly apprehensive and doubted that I was capable of taking on the role as a fellow at the Chicago Center for Family Health (CCFH). As an outsider, I was stricken with feeling like a misfit who simply would not be accepted by this hierarchical medical system. Fortunately, my director and the other supervisors at CCFH were willing to take a chance on an eager, naïve, and very green collaborative healthcare consultant hopeful. They were the gatekeepers that I needed to grant me access into this specialty and the most unexpected champions of my abilities for the duration of my time with them. It was not lost on me that I had accepted a position with the well-respected, John Rolland, so I resolved to counter my insecurities with positivity and soak up all that I could from the experience.  

The collection of practical study of collaborative healthcare, frank process of my challenges, authentic feedback of my development, and enduring support of everyone affiliated with my fellowship have culminated into a notably defining time in my growth as a new medical family therapist. My unconventional introduction into this work was not a planned career goal, but some of what I learned about myself in the context of healthcare may seem typical. From my brief immersion, I developed the following way of being in fulfilling my objective to being an effective member of a collaborative healthcare team.       
All developing relationships that are worthwhile take time and commitment

Be yourself: It presents a platform that you can establish genuine connections with those you will be working with. This will ultimately benefit the patients that you all want to help.

Be confident in your expertise: Many times providers do not know what you have to contribute to the healthcare of their patients until you show that you have something to contribute to the healthcare of their patients.

Be humble in what you have to contribute: While you are educated in the psychosocial elements of an individual and their systems, physicians and nurses are educated in the biological aspects all the same. Ego has no place in patient healthcare.

Be collaborative: It is important for physicians and nurses to be transparent with you about their end of the providing healthcare, but you must also make an effort to communicate your interaction with the patients and their families.

Mantra: Engage individually, act collaboratively, and think systemically.

All developing relationships that are worthwhile take time and commitment from all involved to work together. I needed time to define and settle into my role as a fellow. My supervisors needed time to become acclimated to my personality (quirky, blunt, & vulnerable) and train someone unacquainted with collaborative healthcare, with a tendency to ask the most basic of questions. And, the residents and faculty needed time to visualize and integrate me into their system in a mutually beneficial manner. Eventually, I found myself busy in our newborn clinic (I learned how to use a transcutaneous bilirubin tool), conducting family sessions with multiple healthcare providers in attendance, and working extensively with physicians as a consultant to the psychosocial aspects of their patients’ health. 

In hindsight, this fellowship experience was colored with the most diverse of personalities and perspectives. The accomplishments of my work with patients was not mine alone, but was the direct result of intentional collaborative efforts by all of those I encountered throughout my time at CCFH. One of the most important lessons I learned was that integration of opposing views is actually a crucial factor to the success of our care of patients; after all, opposites oftentimes attract to make for meaningful relationships. 

  
Annie Bao is a licensed marriage and family therapist and a MFT doctoral candidate at Virginia Tech. As a fellow at the Chicago Center for Family Health, she gained experience as a healthcare consultant and therapist at the UIC Family Medicine Residency. She currently supervises MFT graduate students at The Family Institute at Northwestern and works in the Northwestern University and Advocate Illinois Masonic healthcare systems.  

Tags:  collaborative care  medical family therapy 

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Including the Family in Research Evaluating Integrated Care: A Call for Expanding Investigators’ Scope beyond Single-Person Measures

Posted By Tai Mendenhall, Tuesday, March 19, 2013

Providers across the fields of mental health (e.g., Psychology, Medical Family Therapy, Pastoral Counseling, Social work) and biomedical care (e.g., Internal Medicine, Family Practice, Pediatrics) have been increasing their efforts to collaborate with each other since the early 1990s. This movement is, in large part, a natural response to our ever-increasing knowledge about how patients’ respective "parts” – like their minds and their bodies – are more connected than our respective disciplines’ training programs originally prepared us for. As more than 70% of patients attending primary care visits, for example, do so with some kind of psychosocial comorbidity, it is easy to understand how satisfaction with care experiences correlate with the collaborative nature(s) of the services that we provide (Linderman, Koff, Freitag, Min, & Vandivier, 2011; Miller, Kessler, Peek, & Kallenberg, 2010).

This natural (albeit slow) development in our field(s) has evolved in synchrony with our increasing understanding of the strong and reciprocal influences between family functioning (e.g., communication, adaptability, relationship satisfaction) and health (e.g., metabolic control, immune functioning). Indeed, empirical evidence has shown us time-and-again how purposeful attention to families within medical and/or psychotherapeutic interventions can lead to targeted improvements in identified patients’ physiological well-being (e.g., blood pressure, cardiovascular functioning) (Campbell & Patterson, 1995; Tyndall, 2010; Whitney, Murphy, & Landau et al., 2011).

Our efforts to extend collaboration to actively include patients’ families in the care we provide, however, are way out in front of our efforts to evaluate the processes in which families help (or hurt) clinical outcomes. Also lagging are our efforts to understand the impact(s) that our collaborative and integrated care has on families, themselves. While calls to advance empirical support for the work that we do have been made across both local and national/international stages (e.g., Hodgson, Lamson, Mendenhall, & Crane, 2012; Mendenhall, Pratt, Phelps, & Baird, 2012), most research to-date has framed treatment outcomes within individually-oriented frames of dependent variables that are unique to identified patients, alone. A recent review of more than one hundred integrated care studies confirmed this, wherein only a single investigation was recognized for its consideration of family outcomes (Martin, 2012).

Integrating Family- and Relationship- Measures into Healthcare Research

As we work to include patients’ families in the care that we provide, we must also include families in the research that we conduct. In accord with extant literature regarding measures with well-established reliability and validity, the following are instruments that we could begin to integrate into our evaluations of collaborative and integrated care. (Note: In the interests of readability and limited-space, I have not included individual references or studies for each measure described. Literature is robust and easily-found for all instruments identified herein. For more detailed summaries, see Alderfer, Fiese, & Gold et al. (2007) and Walsh (2011)).

Dyadic Relationship Functioning.Our patients’ relationships and social systems are arguably built upon units of two, and it is thereby important to consider ways to assess functioning within the specific unions they maintain. Leading measures evaluating marital and/or romantic-partner relationships include theDyadic Adjustment Scale, the Marital Satisfaction Inventory-Revised, and the Lock-Wallace Marital Adjustment Scale. Collectively these instruments are well-established in their ability to differentiate distressed from non-distressed couples. While paralleling many of the foci evaluated by the aforementioned measures of general family functioning, these tools also tap important dyadic processes related to interpersonal accord and consensus.

Measures with established reliability and validity that evaluate dyadic functioning between parents and children include the Inventory of Parent and Peer Attachment, the Issues Checklist, and the Revised Children’s Report of Parental Behavior Inventory. Key content assessed for by these instruments includes parental acceptance, control and discipline, child attachment, interpersonal trust, communication, alienation, constraining (vs. enabling) interactions, and child discourse changes in reaction to parental responses (i.e., progression vs. regression).

Measures directed toward sibling relationships are still in their infancy, as only one is currently available that for which a compelling empirical base has been developed. The Sibling Relationship Questionnairecaptures interpersonal rivalry, conflict, relative power and status, and warmth/closeness.

Family Relationship Functioning. The most robust group of relational measures in family studies assess for general family functioning. Leading observational instruments (which also encompass clinician-rated interviews) include the Beavers Interactional Scales, the McMaster Clinical Rating Scale, the Iowa Family Interaction Rating Scales, the Circumplex Clinician Rating Scale, and the Mealtime Interaction Coding System. Collectively these measures assess for family phenomena like interpersonal communication, affective responsiveness, problem-solving and adaptability to stress or change, conflict styles and conflict-resolution sequences, organization, and cohesion/relational-closeness. Self-report measures (informed by many of the same guiding family theories) include the Family Assessment Device, the Family Relationship Index of the Family Environment Scale, and the Family Assessment Measure-III. Most researchers advocate the employment of both types of measures (i.e., observational and self-report), insofar as combining and triangulating outsider- and (multiple) insider- perspectives affords a more comprehensive picture of what is going on in families, alongside more confidence in findings ultimately arrived upon.

Relational Functioning vis-à-vis Chronic Illness. Alongside the dyadic- and family- measures outlined above, researchers are beginning to advance relational measures specifically designed to target family functioning within systems living with chronic illness. For example, the Impact on Family Scale, Pediatric Inventory for Parents, and Parents of Children with Disability Inventorycollectively measure family members’ sense of mastery/coping, financial and/or legal burdens, family- and social- relationship satisfaction, personal/emotional stress, respective family members’ roles, and communication sequences with identified patients’ medical teams. The Psychological Adjustment to Illness Scale, while administered to individual patients, includes focused attention to satisfaction with domestic life, sexual relationships, extended family relationships, and social environment(s) and support. Overlapping into arenas of coping per se, the Family Narrative Consortium Coding Scheme, Family Coping Coding System, and the Coping Health Inventory for Parents have all established strong reliability and validity. They assess content areas that include family members’ interpersonal cooperation and coping, social support and psychological stability, and understanding the healthcare system with which they are interacting.

Concluding Thoughts and Next Steps

As we advance research regarding integrated care across clinical, operational, and financial arenas – and as we do this using qualitative, quantitative, and mixed-methods designs – we must remember to include patients’ families within our efforts. Assessing dyadic and/or family functioning alongside dependent variables denoting "success” that are specific to identified patients will better inform how to engage the people that are most important in our patients’ lives to support the very benchmarks that we seek. Conversely, it is important to understand how integrated care that includes family members impacts the family members. Not attending to their needs along the way could translate into a variety of other problems down-the-road if and/or as patients’ support systems erode or fall apart.

The good news here is that we do not have to invent a new wheel. The field of family studies (and within it, Marriage and Family Therapy and – more recently – Medical Family Therapy) has been evolving alongside the field of Collaborative Family Health Care (and within it, Integrated Primary Care and – more recently – the Healthcare Home movement). Established family- and dyadic- measures are already in place, and efforts to integrate these into understanding the intersections of relationships and health have been going on now for quite some time. As we mobilize this natural evolution to bridge advancements in healthcare (i.e., intervening – not just understanding) to tools and instruments in family studies like those outlined herein, we will create new knowledge that further informs the systemically-sensitive and innovative practices that drive us.


References

Alderfer, M., Fiese, B., Gold, J., Cutuli, J., Holmbeck, G., Goldbeck, L., ... & Patterson, J. (2008). Evidence-based assessment in pediatric psychology: Family measures. Journal of Pediatric Psychology, 33, 1046-1061. doi: 10.1093/jpepsy/jsm083

Campbell, T., & Patterson, J. (1995). The effectiveness of family interventions in the treatment of physical illness. Journal of Marital and Family Therapy, 21, 545-583. doi: 10.1111/j.1752-0606.2003.tb01204.x

Hodgson, J., Lamson, A., Mendenhall, T., & Crane, R. (2012). Medical Family Therapy: Opportunity for workforce development in healthcare. Contemporary Family Therapy, 34, 143-146. doi: 10.1007/s10591-012-9199-1

Linderman, D., Koff, P., Freitag, T., Min, S., & Vandivier, R. (2011). Effect of integrated care on advanced chronic obstructive pulmonary disease in high-mortality rural areas. Archives of Internal Medicine, 171, 2059-2061. doi:10.1001/archinternmed.2011.576

Martin, M. (2012). Integrated primary care: A systematic review of study design and program characteristics.Unpublished Doctoral Dissertation, East Carolina University, Greenville, NC.

Mendenhall, T., Pratt, K., Phelps, K., & Baird, M. (2012). Advancing medical family therapy through research: A consideration of qualitative, quantitative, and mixed methods designs. Contemporary Family Therapy, 34, 187-203. doi: 10.1007/s10591-012-9186-6

Miller, B., Kessler, R., Peek, C., & Kallenberg, G. (2010). Establishing the research agenda for collaborative care. Agency for Healthcare Research and Quality. Retrieved from: http://www.ahrq.gov/research/collaborativecare/collab1.htm

Tyndall, L. (2010). Medical family therapy: Conceptual clarification and consensus of an emerging profession. Unpublished Doctoral Dissertation, East Carolina University, Greenville, NC.

Walsh, F. (Ed.). (2011). Normal family processes: Growing diversity and complexity. Guilford Press.

Whitney, J., Murphy, T., Landau, S., Gavan, K., Todd, G., Whitaker, W., & Treasure, J. (2011). A practical comparison of two types of family intervention: An exploratory RCT of family day workshops and individual family work as a supplement to inpatient care for adults with anorexia nervosa. European Eating Disorders Review, 20, 142-150. doi: 10.1002/erv.1076


Tai Mendenhall is an Assistant Professor at the University of Minnesota (UMN) in the Department of Family Social Science, the Associate Director of the UMN’s Citizen Professional Center, and the co-Director of mental health teams within the UMN’s Academic Health Center / Office of Emergency Response’s Medical Reserve Corps (MRC). He is the co-Coordinator of Behavioral Medicine education at the UMN / St. John's Family Medicine Residency Program (in which he teaches and supervises doctoral MedFT interns and family practice residents), and holds an adjunct faculty position in the UMN's Department of Family Medicine & Community Health. Dr. Mendenhall’s principal investigative interests center on the use and application of community-based participatory research (CBPR) methods targeting chronic illnesses in minority- and under-served patient and family populations.

Tags:  integrated care  medical family therapy  research outcomes 

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