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The Things I Miss

Posted By Suzanne Mintz, Thursday, June 23, 2016

 

The things I miss most are the things most folks take for granted.

 

I miss a walk down the street holding hands.

I miss hugs, real standing up hugs.

I miss snuggling in bed and making love

I miss doing things spontaneously

I miss not having to find out about accessibility everywhere we go

I miss being normal

I hate doing transfers more than anything else. There is always the possibility of a fall.

I hate feeding Steven

I’ve never enjoyed driving and now I have to do it all the time

I hate being "on call” all of the time


I wonder what our lives would have been like if Steven hadn’t been diagnosed with multiple sclerosis in 1974. I wonder what decisions we would have made if we didn’t have the cloud of the diagnosis always hanging over us. Perhaps we wouldn’t have bought our first house. We bought a ranch not knowing if Steven would lose the ability to walk stairs. But if we hadn’t bought it, we never would have met Paul who lived next door and changed my life with his friendship and wise advice. Not having parents nearby Paul acted as a surrogate dad during those early years when I was trying to come to terms with having MS in our lives.

 

Because of the pre-existing condition clause that existed in health insurance when Steven was diagnosed his career path was pretty much set. He was with the federal government at the time and so with the federal government he stayed for almost 40 years. Who knows what he would have done or where we would be living if he had the flexibility to chart his own course. But they say "God works in strange ways” and so because he was in essence forced to stay "a fed” all those years we are now enjoying the security that comes with a lifetime government pension.

 

I’ve been a caregiver for so many years now and I anticipate being one for at least another dozen years or so. I wonder if I can do it. I’ve aged and feel its effects. Steven has aged too of course and the MS with the persistence of a dripping faucet keeps degrading his functionality to the point where he can hardly do anything himself. Thank heavens it hasn’t affected his mind.

 

I really shouldn’t complain. We have a good quality of life because of Steven’s pension and good investments we made over the years. We’ve been able to afford some paid help and high quality equipment. We live in a beautiful neighborhood and in a lovely house that has been renovated for complete accessibility. Our friends and neighbors are very helpful and best of all, our daughter and her family live nearby. They provide support and help and we experience the sheer joy of being part of our granddaughter’s everyday life. We truly are fortunate, and yet I wish I wasn’t a caregiver. I find I am tired most of the time.

 

But it is because I’ve been a caregiver for most of my adult life that I’ve been able to bring attention to the needs of the millions of other caregivers in our country. When I look back on the progress that has been made since I co-founded the National Family Caregivers Association in 1993 and how we’ve gone from being a nation that had no idea of who caregivers were, what work they did and what struggles they endured to seeing family caregivers being part and parcel of the new patient and family-centered approach to healthcare. I think of my effort in support of family caregivers as the good that has come from the presence of MS in our lives.

 

I think of the educational materials the organization created and all of the confidence building talks I gave. The letters I received attesting to the positive difference I made in other caregivers’ lives brought me great joy and satisfaction. I know I had, and continue to have, an impact on legislation, and public policy and the lives of individual family caregivers.

 

And I know that none of this would have happened if Steven didn’t have MS and I didn’t experience what I have as his caregiver. It is impossible to know where life will take us, what direction our lives will take either because of very specific actions on our part or by chance. His having MS has been a mixed blessing. Yes our lives have been harder but more enriched as well. Happenings are rarely black and white.

 

And yet I am angry because of what the MS has taken from us and I miss what I think a normal life could have been like.

 

I know I need a vacation from caregiving.

 



Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: "Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.  



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Challenges and Rewards of Fatherhood

Posted By Barry J. Jacobs & Meghana Giridhar, Wednesday, June 15, 2016

 

This piece is a reprint of a post from www.ecarediary.com on June 14th, 2016. Printed here with permission. Click here for the original publication.

Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the co-author (with his wife, Julia Mayer, Psy.D.) of the book, AARP Meditations for Caregivers—Practical, Emotional, and Spiritual Support for You and Your Family (Da Capo Press, July 2016). His first book, The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006), was named the best book on family caregiving by the popular Ask Amy syndicated newspaper column. Here are his perspectives on fatherhood as we near Father’s Day that will be celebrated on June 19th, 2016.

 

How significant is Father’s Day for you?

Father’s Day always brings me mixed feelings. Of course I love the cards and well wishes and a little extra attention that I receive from my daughter and son, now in their early-20s. But the death of Morton W. Jacobs, my father, due to brain cancer when I was 15 left a huge void in my life at a time when, as an unruly adolescent, I could have used strong male guidance. Father’s Day, unfortunately, is a reminder to me of his absence today and during those important formative years for me.

 

How was your relationship with your father as a child?

My father was a strong, sturdy guy--a former college boxer and football player and World War II Air Force sergeant--who had married late in life and didn’t have me, his first born, until he was 37. I can remember thinking as a child that he was so much older than my friends’ fathers and so much more old-fashioned in his dress and attitudes. He could be patient and loving. He spent endless hours teaching my younger brother and me how to play baseball and then rooting loudly for us during our Little League games. But my father also commanded complete obedience. If I horsed around or teased my brother too much when he was in a bad mood, his anger was swift and harsh. He could fly off the handle without much provocation. I loved and admired him but was also intimidated by him.


 

Did it change as time passed? How so?

When I was 14, I was just beginning to express my own thoughts more readily. I could talk to peers and talk back to teachers but my biggest test would be to stand up against my father’s stern will. At about the same time, however, my father suddenly showed the first symptoms of his brain cancer: He lost the power to converse intelligibly as malignant cells invaded the speech center of the left hemisphere of his brain. There could be no debating him after that. Our relationship had radically changed in an instant. Rather than parrying with him, I was now caring for him as my mother’s deputized assistant caregiver. I’d come home from school and sit in our den watching TV with him. But there was little conversation about the TV shows or his cancer or any burgeoning ideas I might have been having. We were with one another but didn’t talk much from that point forward until his death 10 months later.

 

How has that influenced your relationship with you children?

With my daughter and son, I’ve attempted to be a different kind of parent than my father was. I’ve kept my own anger in check and have tried to be respectful of and responsive to my children’s viewpoints. But there are many ways that I’m still my father’s son. He was workaholic lawyer. I’m a workaholic psychologist and writer. He was often distracted and irritable when immersed in projects. As my family will attest, the same goes for me. In a similar way that I am critical of my father, my children are critical of me. That’s the right of every young generation reacting to the old.

 

What is the toughest thing to accept as a son to your father?

That he and I didn’t have the time together for our relationship to grow into one between mutually respectful adults. That he never got to see me become a man. That I never got to see him mellow with age. All got cut short by cancer. But my father is still with me. For the past 40 years, I’ve measured myself against my memories of him as a gentle, furious, complex person. I believe he would be proud of me—but probably not without his own critical asides. During this Father’s Day, as with every other, he and our relationship will be on my mind.

 


Barry J. Jacobs, Psy.D. is the Director of the Behavioral Sciences for the Crozer-Keystone Family Medicine Residency and the lead faculty member for its super-utilizer program, the Crozer Connections the Health Team, and the Camden-Cooper-Crozer Hot-Spotting and Super-Utilizer Fellowship Program. He is also the author of The Emotional Survival Guide for Caregivers (Guilford, 2006).

Meghana Giridhar serves as Content Manager and is part of eCareDiary's founding team. In her role, she oversees and edits content across all of eCareDiary's media platforms. - See more at: http://www.ecarediary.com/Blog2727/Challenges-and-Rewards-of-Fatherhood.aspx#sthash.tWwFsM7E.dpuf

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One Person Wears the Uniform, but the Whole Family Serves

Posted By Kent Corso, Wednesday, June 1, 2016

 

 

Those who volunteer to enter the military are required to make career central to their lives. The military represents one large "unit” for the active duty service member which is then broken down into many smaller units. A very distinct identity develops for the service member first at the level of branch – Army, Navy or Marines and Air Force, then within one’s specialty or occupational code. Finally, identity arises from rank, role within the immediate unit and through contributions to the shared mission of the unit and the larger units. Like members of collectivist cultures, military service members tend to measure their worth in reference to their relationship with the larger group or unit, the entire specialty, rank, or branch. Herein lies an immense source of strength, a factor that emboldens and protects many service members when they deploy, are worn out, or are tired of moving their family every 3 years. It is the constancy of the military unit – the military family which helps them maintain a sense of control, predictability, normalcy and value. But what about the service member’s "actual” family?


It is less often discussed, but families also make the military central to their lives - some willingly, and some with significant reluctance. When children attend school on a military base, it becomes part of their identity – growing up as a military child. When civilian wives or husbands live on or off the military base, it impacts their lives. Service members have demands which extend beyond "normal duty hours”, which means the spouses manage the family and home, sometimes without advanced notice. Yet, the spouses may also have a full time job. Additionally, when there are unit events (pre-deployment gatherings, fundraisers, base community events) spouses are expected to participate. For many of these events, the military provides programming for the children as well. This makes all family members part of the same mission.

 

Spouses of service members often affiliate and rely on one another. For example, there are deployed spouses groups who meet regularly for socializing, sharing resources, and for mutual support while their loved one is deployed. When a service member moves to a new base, another member’s family is the sponsor. This means that the families of active duty help one another acclimate to the new base. After all, they share many of the same challenges and resources. Ultimately, the unit serves as a source of stability for the family, and the family becomes part of that larger unit.

 

However, there may be aspects of the unit and this new "family” which are not so stabilizing. For example, there are times when service members are not allowed to deploy if they are undergoing mental health treatment. If the service member cannot deploy, he or she may feel a sense of shame, for letting the unit down. Likewise, the family feels ashamed, while also being spurned by other families and members of the unit. In this way, there is pressure from within the unit and its families to do one’s part in the larger mission.

 

The culture of the military, which also extends to the family, prides itself in being highly performing. Seeking help – particularly from outside the unit or the unit’s spouses, is aversive. This aversion has persisted because when service members have certain diagnoses or are taking some types of medications, they may be required to surrender their firearm (e.g., military police). If they cannot not do their regular job or they cannot deploy, they are perceived as not high performing and not fulfilling their duty within the larger group. In short, there may be a feared or actual negative impact on their career. For these same reasons, some spouses may also avoid seeking the mental healthcare they need. This is driven by fear that their active duty partner’s commander will discover this, thereby negatively impacting their active duty partner’s career.

 

Imagine family members who are so dedicated to their active duty spouses and the military, that they will avoid treating legitimate personal or familial medical conditions so that they do not disrupt the homeostasis of the military unit. For better or for worse, this is how central the military becomes to the active duty person and his or her family. It defines their lives. But what happens to service members and their families when service ends?


Only after conducting military cultural competency training to civilian healthcare providers in the years after concluding my military service, did it become clear to me why so many veterans and their families struggle when their service concludes. Consider the two things which define military experiences: the unit and the mission. In the civilian world neither is clear, if present at all. For X years the family, children and service member are indoctrinated into the military – acculturated into its lifestyle and its structures. They learn to rely on these structures and cultural elements to excel professionally, to tolerate the frequent moves, to survive the arduous deployments. And when times are the worst, they may keep in mind that they are not alone; there is a unit. They may remind themselves that all the hardship is not for nothing; there is an important mission they are contributing to.

 

But, when entering the civilian world, everything changes. The family remains intact, but even it has been removed from its larger military family, which it identified with and relied upon. In essence, the family and service member are on their own. There is no longer a unit. Second, there may not be a clear mission. Few civilian jobs offer the same higher mission as the military - fighting for freedom. Part of what enabled the military families and members to endure the challenges of military life is that they were serving a higher purpose. It is hard for them to identify with and affiliate with careers and communities which are not cohesively revolving around some meaningful higher purpose. No mission equals nopurpose to most service members and families. Even after only few years of service, the absence of mission and unit may be devastating to the family and the member.

 

We can learn quite a bit from our veteran families and communities. Just imagine what our country would be like if we all insisted on creating communities and pursuing careers which were highly cohesive and oriented around meaningful, service-oriented global missions. This is difficult in the individualistic American society in which we live. But finding a reliable group for affiliation, and a higher mission for accomplishing, in spite of American individualism, is also what would make it so rewarding. Helen Keller once said, "Alone we can do so little, together we can do so much.” I can’t think of a more suitable explanation for the military family mentality.



Kent A. Corso is a licensed clinical health psychologist and board certified behavior analyst. He is an OEF veteran and former Air Force officer having over 15 years of research, teaching and training experience in university and medical settings. Dr. Corso is a subject matter expert for behavioral health re-design and currently holds an adjunct assistant professor position in the Department of Family Medicine at the Uniformed Services University of Health Sciences. As president of NCR Behavioral Health, Dr. Corso leads an international training and consulting group for private and federal healthcare organizations in pursuit of integrated behavioral health programs which improve patients’ health and return the investment to the system. He is the lead author of Integrating Behavioral Health into the Medical Home: A Rapid Implementation Guide, a 2016 book from Greenbranch Publishing. 

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Working With Military Families

Posted By Angela L. Lamson, Meghan H. Lacks, Wednesday, May 25, 2016

 

There are over 3.5 million military personnel in the U.S., including Department of Defense (DoD) Active Duty, Coast Guard, and Reserve members (DoD, 2014). Along with the active duty population, it is estimated that there are currently over 22 million Veterans in the U.S. (U.S. Census Bureau, 2012). The number of family members- spouses, children, and others-is staggering. While services on military bases and Veterans Affairs clinics or hospitals are available for both mental and physical health care needs, military and veteran families also receive services for their health care in civilian communities. Yet research indicates 87% of civilian clinicians are not equipped to meet the unique needs of military service members (Tanielian et al., 2014).

 

As such, clinicians must become more involved in professional development that includes a cultural awareness to military and veteran health and healthcare systems, regardless of a clinician’s own healthcare system delivery methods (see list of select training opportunities and books are provided below). Understanding the unique health experiences of military, veterans, and their families is relevant because it is almost inevitable that clinicians and providers will encounter someone who has either served or had a family member who served in the military.

 

Given the likelihood that most clinicians and providers will care for military personnel, it is important to recognize some unique differences between military and civilian families. For example, service members often marry younger, divorce less, have more young children in the home, and relocate homes more frequently than their civilian counterparts (Clever & Segal, 2013). In addition, the family dynamics of military and veterans differ from civilians, particularly due to child school and peer adjustments because of frequent relocation and family adjustment after parental injury (Hisle-Gorman, Harrington, Nylund, Tercyak, Anthony, & Gorman, 2015). Furthermore, parents in military and veteran families have commonly had to navigate the role of a deployed parent, role of the stateside parent, trustworthy and reliable child care services, family support, and school based support for children.

 

Differences between branches or reserve components, rank, number of deployments, and experiences with combat are also important to recognize when delivering services or designing research projects. Demographic differences provide only a small piece of a very big picture. For example, what is known about active duty women’s health is often times limited to her reproductive or sexual health matters, (Lacks, 2016), and even less is known about the complexities associated with single parenting, dual military couples, or the health of LGBT couples and their families.

 

Based on our experiences, our charge to clinicians and researchers is to recognize and honor the diversity of military and veteran families. This is possible when extending care or research programs through a biopsychosocial-spiritual (BPSS) framework (Engel, 1977, 1980; Wright, Watson & Bell, 1996), and attending to the relational dynamics that emerge through common military and veteran health matters. Some of the most common BPSS challenges include: amputations, traumatic brain injury, insomnia, chronic pain, intimate partner violence, military sexual trauma, substance use, and relational distress (Blaisure, Saathoff-Wells, Pereira, MacDermid Wadsworth, & Dombro, 2016; Goff, Crow, Reisbig, & Hamilton, 2007; Mansfield, Kaufman, Marshall, Gaynes, Morrissey, & Engel, 2010; Trump, Lamson, Lewis & Muse, 2015).

 

In our clinical work, through integrated behavioral health care and traditional therapy sessions, we quickly recognized the complex interaction between physical or behavioral health challenges and relational distress unique to military and veteran lives. There was the civilian husband and his active duty wife, who was preparing for her first deployment. His physical health had begun to decline, resulting in increased weight gain that he attributed to stress about the unknown expectations for his wife’s safety while on deployment. The integrated care team worked with the couple on behavioral health goals for the husband and constructing ways to support one another during the deployment. In another example, a service member in his early 30’s had come into his medical visit reporting back pain that he believed occurred during a training exercise.

 

This resulted in loss of sleep, limited ability to play with his children, and distress in his marriage due to irritability associated with the pain. The medical provider and family therapist collaborated on a variety of treatment strategies for this patient for both his physical and psychosocial concerns and discussed a treatment plan with the patient including exercises and medications that would not interfere with his job duties. In addition, the therapist provided techniques to reduce relational stress. In a follow up visit, the patient and his wife reported the relational techniques were very helpful for them as a family. The patient reported a lower score on the pain scale. He believed his pain was more manageable because of the medication, exercises, and positive experiences he and his wife had shared through the techniques they learned from his integrated care visit.


However, we have also met with individuals, couples, or families who struggled to imagine a future without the presence of physical, emotional, relational, or spiritual pain. Many of our nation’s heroes fight a battle beyond those in the air, field, or sea; many fight the internal battles of guilt, shame, or confusion that result in suicidal ideation. Some are left with moral injuries, leaving lacerations on the soul and spirit. Service members and veterans are trained to be strong for the unit and strong for the country. Vulnerability is contrary to the mission. Yet, guilt and shame in relation to active duty experiences have emerged as predictive of suicide among military and veteran populations. Military and veteran family members serve by-proxy, and often do not know of or how to navigate life alongside a loved one who is suffering from mental health concerns.

 

In providing both traditional and integrated behavioral health care to service members and veterans as well as their partners and families, we have come to learn several important lessons: (1) extend a genuine and curious stance to assessment, diagnosis, and treatment with these populations, (2) honor the biospsychosocial-spiritual complexities of health, as most health visits included at least one significant behavioral health concern (primarily challenges with quality sleep and pain management), (3) promote integrated behavioral health care (it was very well received by the patients as well as by the providers), and (4) encourage and deliver couple-centered or family-centered health care visits in medical and mental health venues, particularly when treating complex biopsychosocial-spiritual health issues.

 

References

Blaisure, K. R., Saathoff-Wells, T., Pereira, A., MacDermid-Wadsworth, S., & Dombro, A. L., (2016). Serving Military Families (2nd Ed). Florence, GA: Routledge.

Clever, M., & Segal, D. R. (2013). The demographics of military children and families. The Future of Children, 23(2), 13-39. doi:10.1353/foc.2013.0018

Department of Defense (DoD). (2014). Demographics report. Retrieved from http://download.militaryonesource.mil/12038/MOS/Reports/2014-Demographics- Report.pdf

Goff, B. S. N., Crow, J. R., Reisbig, A. M. J., & Hamilton, S. (2007). The impact of individual trauma symptoms of deployed soldiers on relationship satisfaction. Journal of Family Psychology, 21(3), 344-353. doi:10.1037/0893-3200.21.3.344

Hisle-Gorman, E., Harrington, D., Nylund, C. M., Tercyak, K. P., Anthony, B. J., Gorman, G. H. (2015). New research: Impact of parents’ wartime military deployment and injury on young children’s safety and mental health. Journal of the American Academy of Child & Adolescent Psychiatry, 54, 294-301 doi: 10.1016/j.jaac.2014.12.017

Kang, H. K., MA, T. A., Smolenski, D. J., Skopp, N. A., Gahm, G. A., & Reger, M. A. (2015). Suicide risk among 1.3 million veterans who were on active duty during the Iraq and Afghanistan wars. Annals of Epidemiology, 25(2), 96-100. doi:10.1016/j.annepidem.2014.11.020

Lacks, M. H. (2016). The biopsychosocial-spiritual health of active duty women: Service members in need of service. (Unpublished doctoral dissertation). East Carolina University. Greenville, NC.

Mansfield, A. J., Kaufman, J. S., Marshall, S. W., Gaynes, B. N., Morrissey, J. P., & Engel, C. C. (2010). Deployment and the use of mental health services among U.S. Army wives. The New England Journal of Medicine, 362(2), 101–109. doi:10.1056/ NEJMoa0900177.

Tanielian, T., Farris, C., Batka, C., Farmer, C. M., Robinson, E., Engel, C. C. … Jaycox, L. (2014). Ready to serve: Community-based provider capacity to deliver culturally competent, quality mental health care to veterans and their families. Santa Monica, CA: RAND Corporation.

Trump, L. J., Lamson, A. L., Lewis, M. E., & Muse, A. R. (2015). His and hers: The interface of military couples’ biological, psychological, and relational health.Contemporary Family Therapy,37(3), 316-328. doi:10.1007/s10591-015-9344-8

U.S. Census Bureau. (2012). A snapshot of our nations Veterans. Retrieved from https://www.census.gov/library/infographics/veterans.html

 

Recommended Resources or Readings

Select Recommended Trainings

1. The Center for Deployment Psychology offers an archive of resources for civilian providers. This website also includes free military culture training modules for healthcare professionals that encourage providers to better understand military culture and its impact on health-related behaviors. http://deploymentpsych.org/psychological-training

2. The Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury offer free monthly webinars that discusses content on a variety of topics related to military life. http://www.dcoe.mil/Training/Monthly_Webinars.aspx

3. The National Center for PTSD offers a large array of resources and training opportunities for providers regarding trauma. http://www.ptsd.va.gov/

 

Select Recommended Books

Anderson, W. (2015). Battlefield Doc: Memoirs of a Korean War combat medic. St. Louis, MO: Moonbridge Publications.

Benimoff, R. (2010). Faith under Fire: An Army chaplain's memoir. New York, NY:Three Rivers Press.

Bonsper, D. (2015). Vietnam memoirs: Part 1. AroSage Publishing.

Kyle, T. (2015). American wife: A memoir of love, war, faith, and renewal. New York, NY: Harper Collins Publishers.

Miller, T. & Brotherton, M. (2015). Tough as they come. New York, NY: Convergent Books.

Tillman, M. (2008). Boots on the ground by dusk: My tribute to Pat Tillman. New York, NY: Rodale, Inc.

 


Dr. Angela Lamson is Associate Dean for Research and Graduate Studies (CHHP) at East Carolina University. 

Dr. Meghan Lacks currently serves as the policy and research analyst for AAMFT where she is responsible for implementing military and Veteran training, research, and policy initiatives for MFTs across the nation.

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Carer, Caregiver: What’s in a Name?

Posted By Carol Levine, Wednesday, April 20, 2016

 

"England and America are two countries separated by the same language.” So said Oscar Wilde or George Bernard Shaw, or maybe both. Our countries use different terms for the same thing (‘trainers” for "sneakers”) and the same term for different things (‘football”). Still, in the realm of health and social policy, both countries face similar challenges in supporting an aging population. In both countries the people who provide most of the care are family members and friends. In the United Kingdom, that person is called a "carer.” In the United States, the most common designation is "family caregiver,” with "family” interpreted broadly.

 

The differences go deeper than terminology. In the UK, there is a Minister for Social Care and Community responsible for implementing a National Carers Strategy. In the US, no one is in charge of a national family caregiving strategy, because there isn’t any. State governments may have their own strategies, but they mostly focus on "long-term services and supports” available primarily to Medicaid beneficiaries, for which states pay a big portion of the costs.


It is difficult to compare national policies without examining their history, demographics, economic context, and other critical factors. In the UK medical care is provided largely through the National Health Service; carers’ services are in the realm of social care, that is, nonmedical support. In the US, despite recent efforts to bring these two worlds together, the effort is hampered by fragmentation at all levels.

 

Big picture differences aside, it is instructive to compare the recently released UK Department of Health’s online survey for carers and the professionals who support them, and a similar survey from Carers UK, a leading advocacy organization, and to note some differences with the US experience. More than just underscoring the need for information to guide policy on the US side, the UK surveys suggest some opportunities in the US to obtain standardized information from family caregivers and to create an impetus for a national strategy.

 

Caregiver surveys are tools that give policy makers important information about the diversity of the population, the range of their contributions to the health care and well-being of the people they care for, the challenges they face, and their unmet needs. Surveys are also one way to give family caregivers a voice in policy development and implementation. Because in the UK there is a defined locus of responsibility for meeting carers’ needs, the survey findings can be more easily incorporated into planning than in the US, where accountability is diffuse and elusive.

 

UK Department of Health Survey

In preparation for a new Carers’ Strategy, the UK Department of Health has issued a "call for evidence” and is seeking views from carers and their families, and from professionals who work with them, on what more should be done to provide support. Unlike US caregiver surveys, mostly conducted by nonprofit organizations, academic institutions, and some federal agencies, all with different definitions, purposes, and populations, the most distinctive feature of the UK government survey is its emphasis on "young carers” (under the age of 18). Several sections are specifically devoted to them, and throughout questions are phrased so that there is an option for young carers to reply. With the exception of one national survey devoted to young caregivers in the US, published in 2005, all national surveys include only caregivers over the age of 18. (An increasing number of caregivers fall into the "millennial” category, ages 18-34.) Just as in the UK, there are many children and teenagers under 18 in the US who are caregivers, but we don’t count them, identify their needs, and (except for a few pioneering programs) support them.

 

 

One issue raised by the UK survey is also common in the US: identifying people as carers. The survey asks whether the respondents received help to identify themselves as carers and whether that was important. It also provides space to suggest specific ways to help carers recognize that they are not just daughters, sons, or spouses, but also carers.

 

The UK Carers Act of 2014 requires local governments (known as "authorities”) to provide a range of information and advice services to carers, including an opportunity for an assessment of their needs, which is their legal right. Carers over 16 may be eligible to receive a Carer’s Allowance of £62.10 a week ($89.19) if they provide over 35 hours of care a week and earn less than £100 ($143.62) a week. The survey asks about carers’ experiences obtaining this support.

 

Similar to US surveys, the government survey asks about physical and mental health problems and difficulties balancing paid employment with caring responsibilities. It also asks about "ensuring a life outside caring,” which in US surveys is usually phrased less elegantly as "quality of life.”

 

Carers UK Survey

Every year Carers UK surveys carers and others about what they do, gaps in services, and other items. Like the government survey, this advocacy organization survey has many boxes for respondents to tell their stories, suggest changes, and upload reports or documents. This online survey asks the type of care or support provided, including "arranging/coordinating care and support, medical appointments and other help” and "helping with medication (e.g., making sure he/she takes pills, giving injections, changing dressings”). One section is devoted to transition from a hospital stay. This is a greater level of specificity than in the government survey. It also suggests that carers’ responsibilities fall into both the medical and social categories.

 

Housing receives considerable attention in the Carers UK survey, but not in the government survey, nor generally in US surveys, other than a question asking whether the care recipient lives with the caregiver. The Carers UK survey asks about the respondents’ current housing situation, including the option of renting a home from a local authority, and whether the current home is adequate for the ill person and the carer’s needs. Several questions in this survey suggest that waiting lists for services are a problem; one option on the housing question is "Our home is not appropriate and we are on the waiting list for local authority housing.” Another question concerns home adaptations, and one option is "We have qualified for adaptations to be made by the local authority and have been waiting for these to be made for more than 18 months.”

 

Technology is another important area in the Carers UK survey. The survey acknowledges that it is an advocacy tool, noting, "We’re gathering evidence…to make the case for Government, public service professionals and technology providers to open up access to these important technologies.” The survey questions ask about current use of technology, such as a fall detector or personal alarms; and it further asks about the impact on the carer’s life, including positive and negative results.

 

Other domains include finances, community supports, and employment.

 

Implications for the US

It would be difficult to replicate the UK experience, and surveys alone will not reach the full range of American caregivers. The surveys are long and in English only. Neither UK survey is a representative sample; the responses come from already identified carers and service providers. Online surveys limit respondents to computer users.

 

At a minimum, the Centers for Disease Control and Prevention (CDC) could make additional use of its public health surveillance system called the Behavioral Risk Factor Surveillance System (BRFSS). All states are required to ask a representative sample of residents a series of core questions; they can include some optional modules; and they can ask questions that they want answered. The optional modules add costs to the states. The questions are administered by phone (landline and cell phone). The eight-question caregiver module is optional. In 2015 24 states chose this option, and others could be given incentives to include the caregiver questions, or the module could be made part of the core questions. Although the information gathered is minimal, it could form the basis for a national strategy. Further, states should move beyond Medicaid to look at middle-income families who are struggling to provide care, maintain jobs, take care of children, and fulfill all the other responsibilities they have.

 

Carers and caregivers may be divided by language, as Wilde and Shaw observed, but they share similar needs. For the future, caregivers need a coherent national strategy, implemented by states to reflect local needs. As the well-known American philosopher Yogi Berra said, "You’ve got to be very careful if you don’t know where you are going, because you might not get there.”

 


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

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To Be or Not to Be

Posted By Suzanne Mintz, Monday, April 11, 2016
Updated: Monday, April 11, 2016

 

This piece is a reprint from March 2015. Click here for original post. 

In the past few months my husband Steven has added two more doctors to his alphabet soup of medical professionals, a pulmonologist and a rheumatologist. He now has eight physicians in charge of various parts of his body.


We share a family doc, but Steven also has a neurologist for his MS, an orthopedist for his osteoporosis, a physiatrist who focuses on his functioning, an ophthalmologistwho keeps a watch on his optic nerve since MS can affect eyesight, a urologist to deal with his neurogenic bladder and accompanying bladder stones, a physical therapist who comes to the house twice a week, an occasional visit to a podiatrist to deal with cracking between his toes, and of course the usual bi-annual visit to the dentist.


The recent addition of the pulmonologist and the rheumatologist has really scared us because their specialties deal with hidden problems that are caused by the pernicious degradation of his body. Everyone focuses so intently on the visible aspects of his disability, the fact that he is in a wheelchair, his increasing inability to feed himself and to push the computer keys, but it is the hidden degeneration of his body that is most worrisome to us. Sometimes it really gets us down, but then we remember how lucky we are to have each other, live near our daughter, have the funds to purchase the items and services we need and overall a good quality of life.


Steven’s neck has been stiff for a long time, and a MRI, the first he’s had since early on in the course of his disease, has shown the existence of osteoarthritis. It explains the intense neck pain he feels, its poor range of motion, and the dull ache in the lower back of his head. Apparently there isn’t all that much that can be done about it; "Take ibuprophen” the rheumatologist said. "It will reduce some of the inflammation and the associated pain, but it might also cause stomach problems. If so you’ll need to add an antacid to your medication regimen”. He also suggested that Steven get a soft collar for his neck to help relieve the pressure that accompanies each movement.

In the past few months, Steven has added two more doctors to his alphabet soup of medical professionals

 

 

Steven went to the pulmonologist at the suggestion of our primary care doc who said he thought Steven’s voice had been getting softer. With pneumonia often being the cause of death for people with MS, he wanted to make sure Steven’s lungs were functioning properly. It turns out they aren’t. The breathing tests Steven underwent showed how abnormal his lung function actually is. One of the biggest problems is his inability to expel all of the carbon dioxide from his lungs. The pulmonologist scheduled a sleep study. He thought it would show sleep apnea and therefore point to the need for Steven to get a continuous pulmonary air pressure machine, generally referred to by its initials, CPAP. Because the machine forces constant air into your lungs through a tube connected to nose "pillows”, soft rubbery nasal inserts, it ensures the proper flow of gases in and gases out.

 

Steven was diagnosed with MS in 1974 when he was 31. He turned 71 this past summer so we’ve been dealing with MS for 40 years now. The heavy duty caregiving began about 20 years ago when he got his first wheelchair, and it’s been downhill ever since.

 

The neurologist surprised us recently when he said Steven may not actually have MS, that there is some thought in the medical community that primary progressive MS, which is Steven’s diagnosis, may not be MS at all because the only things it seems to have in common with classic MS is that it attacks the body early in one’s adulthood and causes the breakdown of myelin and the consequent scar tissue. Steven’s disease, whatever it is, only attacks the nerves in the spinal cord, not those in the brain and it isn’t characterized by relapses and remissions, but is rather a slow but steady degeneration. Fortunately it doesn’t show any cognitive impact: Three cheers for that!


What matters is that he is losing more and more function

In the long run, whether Steven has MS or something that looks like MS doesn’t really matter. What matters is that he is losing more and more function, inside and out, and there isn’t much we can do about it. Coupled with the normal changes that come with aging, our abnormal life is continually becoming more so.

 

 Despite the difficulty we refuse to let all-of-this stop us from living as full a life as possible. Steven has been retired for three and a half years and I for one year, so we have more time and flexibility regarding what things we can do and when we can do them. Why battle weekend crowds at the movies when we can go on a weekday afternoon? We recently got back from a vacation to Newport RI. It’s a short flight to Providence from where we live and we were able to rent an accessible minivan for the 40 minute drive down to Newport. Once there we "walked” to as many places as we could and had a grand time. The concierge at our hotel found out about a boat that could handle Steven’s wheelchair and we took a lovely tour around the harbor. We went to visit the extraordinarily ostentatious Vanderbilt summer "cottage” and walked along the cliff. We ate lobster and saw fabulous sunsets. We were always back in our room by 9:30 completely worn out from the day’s activities. We slept in taking our time to get started the next day, doing everything at our own pace.


To be fully involved in living or to let MS control our lives, that is the question. For us the answer is simple: Do as much as you can with what you’ve got and enjoy life as much as possible. This summer we hope to go to Santa Fe, one of our favorite places.



Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: "Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.

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Bedtime Pass: Does it Work?

Posted By Laura Sudano, Jennifer Miller, Elizabeth Skidmore, Thursday, March 24, 2016

Annoyed by the lack of new and innovative ways for keeping children in bed, parents of young children have started to explore techniques for getting little ones to sleep by themselves. "All of these researchers are trying to help us, we know. But we had enough,” said one frustrated parent of a four year-old sleepless child. "These kids have a sixth sense about them – they know when I am deep in REM sleep and come and wake me up.” Parents across America are losing sleep and have attempted to keep their children in bed. One father shared his failed attempts to keep his child in his room, "I have tried Avengers-themed bed straps and padlocks, and ice cream laced Benadryl. Nothing works. He finds his way to my room like a candy bar finds its way into my mouth. It just knows the way.”


 

Despite these struggles, one researcher has found a solution. Connie Schnoes, a mother of six and director of National Behavioral Health Dissemination at the Boys Town Center for Behavioral Health in Boys Town, Nebraska, created the "Bedtime Pass.” The National Public Radio (NPR) article which highlighted this research describes how it works: Every night, parents give their child a five-by-seven card that is the bedtime pass. They explain to their child that the pass is good for one excused departure from the bedroom per night, whether that's to use the bathroom, get one more hug, report a scary dream, whatever. After the pass is used, the child may not leave the bedroom again, and the parents are not to answer if they call out. (NPR, 2015). Schnoes’ study was published in October 1999 in the Archives of Pediatrics and Adolescent Medicine.

 

 

My (JM) initial reaction to the bedtime pass was "it can't be that easy” because like most things, if it were an easy fix we wouldn't be having this discussion. Behavioral insomnia is not an uncommon phenomenon and occurs in 10-30% of children. As noted by the American Academy of Family Physicians (AAFP), this condition is typically the result of a child refusing to sleep without certain conditions or limit-setting types. Instead of relying on the "Band-Aid” that is the bedtime pass, we should embrace that the best treatment is prevention. As noted in the 2014 AAFP journal (Carter, Hathaway, & Lettieri, 2014), physicians should encourage good sleep hygiene including setting boundaries and consistent sleep times. Previous studies (Anders & Keener, 1985; Goodlin-Jones et al., 2001) show that infants who are placed in the crib awake versus asleep are more likely to become self-soothers. By setting a routine we create expectations and a reliable foundation, which I believe is better than a temporary fix.


 

We, as family medicine physicians, forget that giving advice is hard and getting a parent to consider advice from a physician without children is sometimes harder. I (JM) think we also forget that not only are these sleep issues affecting the children, but advice we give the parents affects their sleep as well. We may recommend that parents keep to a sleep schedule and facilitate optimal sleep hygiene. Advice or recommendations sound great, but execution is tough. For example, I (JM) met a single parent who works third shift while her oldest daughter, in college, helps with the kids at home. It is one thing to give advice to the parent, who implements changes at home. In this case, one may seem almost guilty to pass along the advice knowing that more burden is placed on the eldest child, who is already dealing with college responsibilities and now has another added task. Patient in context is important.


 

Similar to JM, "It can't be that easy," was my (ES) initial reaction to this allegedly revolutionary "Bedtime Pass." I have visions of walls reverberating with screams and the magical pass reaching its untimely demise in shreds scattered over the ground. However, my pessimistic stance stems from perceived and not personal frustration with this problem, as I listen sympathetically to the parents of my young patients as they describe the bedtime woes, offer some vague supportive advice, and leave the room with a good-luck pat on the shoulder as I head home for a quiet evening in a kid-less house. As a family medicine physician, I advise sleep deprived parents of young children to ignore the unwanted behavior and reward the desired behavior with positive attention.

 

 

Research suggests that a contributing factor to children’s behavioral problems is negative (i.e., harsh discipline) parenting behavior (McKee et al., 2007). The "Bedtime Pass” may work for parents and children because of the respect for children’s agency, creates a balance between limits and latitude, and allows children to regulate their emotions to a certain degree. For example, the child who is given a "Bedtime Pass” may choose when and where to use it, without a negative consequence for their actions. A child’s freedom to make choices and mistakes within limits is a main tenant of parenting techniques such as Love and Logic (Fay, Cline, & Fay, 2015). Considering the difficulty of tackling the philosophy of parental discipline in a quick clinic visit, the "Bedtime Pass" is quite attractive given the simplicity of the idea and a concrete plan that is easy to prescribe for at least a trial run.


 

I want to first disclose that I (LS) am not a parent. And what I say to those parents who are patients in my practice is, "I know that you probably hear more parenting advice from those who do not have children. So, bear with me.” I hope you, the reader, bear with me as well. Before sending this to our CFHA blog editor, Dr. Matt Martin, I thought the article was cold blooded! It reminded me of the Ferber Method… let the child cry it out. I think the "Bedtime Pass” has some credibility but I would be hesitant to direct my sleep deprived parents of young children to use this method. Instead, I would want to ask a few questions to figure out which method may fit to solve their child’s sleep issues. You know, because we are patient-centered. I would first want to understand the parent-child relationship and how the parent interacts with the child. For example, how does the parent respond to the child if the child becomes upset? Teaching a child how to self-soothe is important as it leads to positive outcomes for building resilience (Buckner, Mezzacappa, & Bearslee, 2003), good interpersonal relationships (Rubin, Coplan, Fox, & Calkins, 1995) and reduced risk for developing depression and anxiety (Alvord & Grados, 2004). If the parent is anxious or misreads the child's cues, then I (LS) would focus on the parent first and coach them in session. Or if a child is anxious, I use breathing techniques to help them self-regulate. I think the "Bedtime Pass,” as my colleagues have mentioned, may not be addressing the core issue – the problem could be a behavioral issue which can be a result of an emotional regulation or attachment issue. This is, of course, in my (non parent) clinical opinion.


 

When it comes to getting more sleep, our position is that people will try anything and everything. We would do anything it takes to get more sleep if it were us in the position of having young children who didn’t stay in their room. Our recommendation, however, is to remember the patient in context and be patient-centered in your approach to help sleep-deprived parents get more sleep.

 

References

Alvord, M. K., & Grados, J. J. (2005) Enhancing resilience in children: A proactive approach. Professional Psychology: Research and Practice, 36, 238-245. doi: 0.1037/0735-7028.36.3.238

Anders, T. F., & Keener, M. (1985). Developmental course of nighttime sleep-wake patterns in full-term and premature infants during the first year of life. Sleep, 8, 173-192.

 

Buckner, J. C., Mezzacappa, E., & Beardslee, W. R. (2003). Characteristics of resilient youths living in poverty: The role of self-regulatory process. Development and Psychopathology, 15, 139–162. doi: 10.1017.S0954579403000087

 

Carter, K. A., Hathaway, N. E., & Lettieri, C. F. (2014). Common sleep disorders in children. American Academy of Family Physicians, 89, 368-377.

 

Fay, J., Cline, F. W., & Fay, C. (2015). https://www.loveandlogic.com/about/bios. Accessed January 6th, 2016.

 

Goodlin-Jones, B. L., Burnham, M. M., Gaylor, E. E., & Anders, T. F. (2001). Night walking, sleep-wake organization, and self-soothing in the first year of life. Journal of Developmental & Behavioral Pediatrics, 22, 226-233.

 

McKee, L., Roland, E., Coffelt, N., Olson, A. L., & Forehand, R. (2007). Harsh discipline and child problem behaviors: The roles of positive parenting and gender. Journal of Family Violence, 22, 187-196. doi: 10.1007/s10896-007-9070-6

 

Rubin, K. H., Coplan, R. J., Fox, N. A., & Calkins, S. D. (1995). Emotionality, emotional regulation, and preschoolers' social adaptation. Development and Psychopathology, 7, 49–62. doi: 10.1017/S0954579400006337

 

Wendy Mitman Clarke (September 18, 2015). The bedtime pass helps parents and kids skip the sleep struggles. http://www.npr.org/sections/health-shots/2015/09/18/441492810/the-bedtime-pass-helps-parents-and-kids-skip-the-sleep-struggles. Accessed September 18th, 2015.


Dr. Jennifer Miller is a third year Family Medicine Resident at Wake Forest. She graduated from Florida State University College of Medicine with an interest in sports medicine. Moving forward she hopes to practice in an integrated care model with a focus on community awareness of preventative health measures.

Dr. Elizabeth Skidmore is a second year Family Medicine Resident at Wake Forest Family Medicine. She looks forward to being a general practitioner after completion of residency, and enjoys opportunities to combine an interest in writing with her interest in medicine.

Laura Sudano is an Assistant Professor and the Director of Behavioral Science at Wake Forest Family Medicine Residency. Her interest is in the application of integrated care in different medical settings, residency training, and interprofessional education/training. She enjoys collaborating with different departments in the institution to provide comprehensive, integrated care services to patients in the Wake Health system.

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Anyone Can Cook (in the MedFT Kitchen)!

Posted By Sarah Woods, Thursday, March 10, 2016

I have an almost 2-year-old. One afternoon this summer, I turned the TV on "just to catch some news” (and a parenting breather) and Disney’s Ratatouille was on. So, I thought I would break all of AAP’s (revised) rules and allow her to watch some of the movie.

 

The message of Ratatouille, and the movie’s conscience, Chef Gusteau, is that "anyone can cook!” While characters in the movie struggle with issues of identity, confidence, and social support (as a therapist, naturally I overanalyzed the whole thing), the conclusion is that, while "not everyone can become a great artist – a great artist cancome from anywhere.” This message replayed in my head, over and over. If anyone can cook, and the truly fearless can be great – doesn’t that hold true for MedFT?

 


 

I am a MedFT, but train family therapists in a MS/PhD Family Therapy program. Not all of my students are interested, or knowledgeable (yet) in medical family therapy or integrated care. My emphasis is always on how to train general, new MFTs on how to do quality collaboration, especially with systems they are not embedded in (e.g., PCPs located outside their own mental health system). At times I myself have struggled with this identity. If I am a "true” MedFT, shouldn’t I be teaching and training in a MedFT program? Shouldn’t I be identifying only with that group of fabulous people, teaching in a family medicine residency, getting specialized training in fully integrated models, working clinically in medical settings? I recently had a former student ask me, "So, when are you going to get back to MedFT?” I almost didn’t understand what she meant, because that’s who I am at my core. But, her question was about whether I was ever going to practice in a medical home again, because, to her, that’s what a MedFT does. Only, and solely, in one defined area of family therapy.

 

But, here’s the thing: ALLfamily therapists need to understand the core tenets of MedFT, the skills and techniques of collaborative care, the importance of the biological domain, and the language of medical systems. Whether my students "grow up” to practice in a hospital, or in community mental health does not matter. It’s critical that they use a biopsychosocial approach, and that they advocate for their families to recognize the biological dimension of what they face and for other providers to consider the psychosocial aspects of their shared patients. Please understand, I do not mean that anyone and everyone takes a biopsychosocial approach to care, and that all therapists are also MedFTs. Instead, as Chef Gusteau suggests, "greatness in cooking can come from anywhere.” Any therapist who adopts a biopsychosocial approach and "wants to take seriously the health and relational aspects of their patients’ lives” (McDaniel, Doherty & Hepworth, 2014, p. 8) can be a MedFT. My students have equal opportunity to pursue education, training, and practice in this approach, and must be pushed to think outside their psychosocial cookbook.

 

As the movie suggests, family therapists may only be limited by their soul, not by where they come from; MFTs interested in thinking about larger, medical systems "must be imaginative, strong-hearted.” Further, "you must try things that may not work, and you must not let anyone define your limits because of where you come from.” The only limit, for a family therapist from general MFT origins, is whether they adopt a biopsychosocial approach, prioritize collaborating with medical professionals, and seek to consider healthcare providers and systems in their clinical work. Regardless of training background, a philosophical orientation to families and working with them is key. As I teach my family therapy students – educate yourselves about chronic illness, be brave and approach physicians to share care, read literature outside family therapy-only journals, and include the biological dimension in your treatment plans. They’re capable, just not quite as confident as perhaps students coming from MedFT-specific training programs. Which, I suppose, says something about me too: as a MedFT educating family therapists who may or may not be interested in my obsession, it’s important I train for confidence as well as skill, and model confidence in my own self-knowledge and professional identity.

Although I made sure to turn the TV off after 20 minutes of co-viewing…Chef Gusteau’s mantra stayed with me. Not everyone will become a Medical Family Therapist, but a great MedFT can come from anywhere.

 

References

McDaniel, S. H., Doherty, W. J., & Hepworth, J. (2014). Medical family therapy and integrated care(2nd ed.). Upper Saddle River, NJ: Pearson Merrill Prentice Hall.


Sarah Woods, PhD, LMFT-Supervisor is an Assistant Professor and Program Coordinator of the Family Therapy program at Texas Woman’s University in Denton, TX. She graduated with her MS in MFT from the University of Rochester, and PhD in MFT from The Florida State University. Her research focuses on the connections between family relationships and physical health outcomes, especially for underrepresented adult populations.


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Motherhood Beyond Borders: Physician Perspectives on Comprehensive Medical Care

Posted By Alexandra E. Schmidt, Alicia L. Adams, Paul D. Simmons, & Elvira R. Whiteford , Monday, February 29, 2016

I do not speak their language, and most of them do not speak mine. Still, I have great hope that the care I receive in this country will be better for me and my baby than what I can get at home. I am here because my husband found work here, but I do not know many people. I come to appointments on my own because my husband has to work. The doctor, earnest and nice, and I struggle to communicate. She knows a few phrases of my language, which I find endearing and for which I am grateful. But most of our visit together is done with the help of an interpreter on the phone. I hope the interpreter is getting it right, and I’m sure my doctor feels the same way. When we listen to my baby’s heartbeat, we smile at each other – we share that moment in common, even if we use different words.

                                                                                                                                    

But I am afraid. I am afraid of the hospital when the time comes to have my baby – it is so big, so clean and white, full of strange machines. I am afraid of the pain and that I won’t understand what they are doing to me. What if there are problems? Will they be able to explain to me what is going on? My mother told me about when she had me and how scary that first baby can be – but she was surrounded by family and a midwife who had known her for years! I will be in a foreign place, with people who don’t look like me, don’t know me, and don’t understand me. I live in this country, of course, and go to the grocery store and gas station and post office.  I’m able to manage most things in this foreign place. But having a baby is different! So, yes, I am afraid.

 

Pregnancy is often a time of mixed emotions: joyful celebration of new life, hope for the family’s future legacy, and fear of the unknown. These emotions become magnified for mothers who find themselves in a foreign medical system with unfamiliar language barriers. Around the world, pregnancy is understood as a time of increased risk for health complications for women. Although developed countries tend to have lower rates of maternal deaths than less developed countries, a recent report showed that the number of maternal deaths in the United States actually increased from 1990 to 2013, whereas maternal deaths in less developed countries have declined (Erickson, 2015). There are likely a number of factors to explain this curious finding, including the increased provision of prenatal care for pregnant women in less developed countries. However, this discovery presents a reminder that pregnant women in developed countries are not immune to potentially life-threatening complications such as cardiovascular disease, infection, and diabetes. Women with high stress levels and low social support are at an even greater risk for complications.

 

Family-oriented care during pregnancy and childbirth encourages clinicians to consider all aspects of maternal care, including those that extend beyond the borders of traditional medicine. The transition to motherhood includes challenges such as couples’ adjustment to parenting roles, decisions to be made about lifestyle changes (e.g. smoking cessation), and building a support system to adequately manage stress. For mothers who have traveled to another country to give birth, there are additional challenges related to acculturation. A collaborative treatment team, including a medical family therapist, can provide comprehensive, culturally informed clinical care to support mothers in reducing risks of medical complications by following physicians’ recommendations, increasing social support, and engaging in positive health behaviors. This blog presents two physicians’ perspectives regarding the importance of comprehensive care to promote maternal health and reduce the risk of negative outcomes for biomedical and psychosocial health.

 

[AA] A few months ago, I was part of a delivery during an OB rotation that I will not soon forget. This first-time mother was very young and new to this country. Speaking virtually no English, she had fled her country to escape political violence and somehow settled in our small town. She delivered her baby in silence and did not want to hold him. When I spoke with her the next morning using the translator telephone line, she said she was not in any real pain despite her significant lacerations from delivery and begged to go home. Her baby was in the nurse’s station, and she still had not held him. Imagining the difficulty of delivering a baby in a foreign medical system, I wanted to insist that she stay longer to heal and adjust to this new role as mother. She had recovered well, however, so I hesitatingly agreed to discharge her.

 

Reflecting back on this case, I could not shake my desire to offer her more care beyond ensuring a safe delivery. I thought of the trauma she had experienced in her home country, the many unsavory things that could have led to pregnancy at such a young age, and the discomfort she undoubtedly experienced in a small town of people who do not look, act, or speak like her. I yearned for her to be a patient in my own clinic so I could connect her with a behavioral health provider to help her prepare for this new phase of life. Recognizing her need for a safe community and ongoing support, I aspire to provide these resources for my future patients.

 

[EW] At our family medicine residency practice, we have offered group prenatal care for Spanish-speaking-only patients for the last seven years. A key aspect of our clinic’s mission is to provide comprehensive care for the most vulnerable and marginalized populations, which often includes pregnant women without legal status. These women are frequently fleeing traumatic situations, or they have moved away from the only culture, support system and world they knew in hopes of better opportunities for their families. Often, these women speak rudimentary English and only qualify for emergency Medicaid. As this insurance only covers basic costs for the delivery, but not for prenatal care, both the mother and baby are at increased risk for negative health outcomes. As a family physician leading this group, I sought out Dr. Randall Reitz, a medical family therapist, to help blend obstetrical care with family support, cultural sensitivity, and counseling in a group setting. We enthusiastically collaborated to create this group for our Latina obstetrics patients. This teamwork empowered us to create a dynamic group that has provided patients with benefits such as increased education and safety throughout pregnancy and newborn care, life-long friendships started in the group, and partnership with family members who also attend. We, too, as providers, have been moved by these women’s courageous sharing of their stories and are inspired to continue refining this group to address the evolving health needs of pregnant women and their families.

 

References

Erickson, F. (2015, November 18). Maternal health around the world [Infographic]. Retrieved January 1,

2016 from https://online.nursing.georgetown.edu/maternal-health-around-the-world-infographic/


 

Alex Schmidt, MS, LMFT-A is a Medical Family Therapy Fellow at St. Mary’s Family Medicine Residency in Grand Junction, CO. She is a Ph.D. Candidate in Marriage and Family Therapy at Texas Tech University and holds a M.S. in Family Therapy from Texas Woman’s University and a B.A. in Psychology from Baylor University. Her research and clinical interests include adults with type 1 diabetes, couples facing reproductive losses, and integrated care training in rural primary care.

 

Alicia Adams, MD is a first year resident at St. Mary's Family Medicine Residency in Grand Junction, CO. She completed her undergraduate education at Brown University and attended Rush University for medical school. She is passionate about providing care to the underserved and has special interests in maternal and child health.

   

Paul Simmons, MD received his B.A. in History at Baylor University. He received his medical degree from the University of Colorado in 1999 and completed a family medicine residency in 2002 at North Colorado Family Medicine Residency in Greeley. He has practiced the full scope of rural medicine (including endoscopy, obstetrics and sleep medicine) in western Wisconsin and eastern Colorado. He moved to Grand Junction, CO in 2010 to train family medicine residents at St. Mary’s Family Medicine Residency Program.

   

Elvira Whiteford, MD pursued her medical degree in California at Loma Linda University Medical Center and then completed an Obstetrical Fellowship at Arrowhead Regional Medical Center. She has been a part of the faculty at St. Mary’s Family Medicine Residents since 2007 and has greatly enjoyed educating the residents and medical staff about a variety of Family Medicine topics, but she has special interest in Maternal Care. 

 

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Personal Definitions of Family Healthcare: Do They Matter?

Posted By Lisa Zak-Hunter, Thursday, February 18, 2016

I overheard a family physician lament about the unraveling of family practice. It was after a long day of seeing single parent families, grandparents raising children, and endless single pregnant women. The statement was something along the lines of “A single mother and her baby are not a family. This is not why I went into practice.” I sensed frustration and disillusionment from someone who idealized caring for mom, dad, kids, and grandma and grandpa. I put my initial feelings aside and tried stepping into his shoes. A theme I kept coming back to was: how do provider definitions of ‘family’ or the ‘ideal family’ impact patient care and provider wellbeing?


Within the past few years, there has been increased discussion about both how to define family and who defines family. The Syrian refugee crisis has reignited debate over the laws that govern and programs that service immigrant, refugee, and undocumented families. It has also highlighted how families are torn apart in times of war and conflict, leaving them grappling to redefine themselves. Gay marriage has also been legalized in our country more recently, and there continue to be discussions about its legality and morality. Family structures have changed in other ways as well. Births to older women are on the rise and overall birth rates are low (Howe, 2015; Matthews & Hamilton, 2014). Statistics also indicate that approximately 60% of children live in a family with married parents where at least one works. The other 40% live with single parents, grandparents, a parent and their significant other, or other situations (Council on Contemporary Families, 2012). In 2012, the chances that two children selected at random would share the same family constellation was just under 50%, compared to about 80% in 1960 (Council on Contemporary Families, 2012). In other situations and within certain cultures, family members may not be blood relatives but close friends. At this point, it is challenging to identify the ‘typical American family’ because there is no dominant family form (Council on Contemporary Families, 2012).


If there is no dominant family form, how do we provide family healthcare? How family is legally defined in healthcare influences treatment. We are reminded of this as non-legal significant others or non-legal parents have a more difficult time obtaining information and making treatment decisions for minor patients or unresponsive loved ones. They are not considered next of kin, and proper paper work needs to be in place to ensure communication with healthcare providers. How we address these ethical and legal issues could be a blog post in itself!


Perhaps most relevant to the physician’s comment… how much do providers’ personal definitions of family influence care? In February 2015, a news story came out about a pediatrician who declined to treat a lesbian couple’s baby. According to the note the physician sent the couple, she feared she would not be able to establish a good doctor-patient relationship the way she normally does. She did not elaborate whether this was due to the couple’s sexual orientation, but many believed it did. The story raised questions about how the physician handled the manner, and whether it was appropriate, moral, and legal. Assuming the concern was over the morality of their family structure, what would have happened if the pediatrician HAD chosen to work with that family? How could her beliefs influence care? What about the family physician I overheard who was frustrated that the families he treated did not fit his definition of family? Did he take a subtle tone of frustration or disapproval into the room? Did he spend less time with those patients?


Conversely, did he spend more time out of possibly misplaced fear about children’s well-being in a ‘broken home’? Sometimes a provider views the family as ‘un-whole’ or ‘broken’ and may treat members with pity or attribute their concerns to their ‘brokenness’. At that point, the provider has decided to define the family’s value based on personal biases and assumptions instead of the patient’s perspective and circumstances. If a single mother chooses to be single because she can keep her children safe or hold a higher paying job, the family may not need pity or additional resources. A well-intentioned provider may react without knowing the family’s story or integrating the family’s perspective into treatment.


One way to address assumptions and biases is during training. Across the nation, medical students and residents learn algorithms, evidence-based medicine, procedures, and standards of care. They learn how to assess, diagnose, and treat. Self-reflection becomes secondary, tertiary, or non-existent. Especially for those who plan to work with families, reflection ought to be structured into their training. Providers should be able to identify ways to address family concerns or structures they find questionable and be aware of how their treatment of these families may be subtly different. At the very least, there should be a willingness to be open and vulnerable and to wrestle with these questions. There should be safe places built into curriculum for this exploration. Practitioners are human. They hold a variety of beliefs and definitions of family. They are also accountable for providing quality family-centered care.


At the end of my day, I heard something that made me smile. A resident who was opposed to premarital sex visited with a scared, newly pregnant, unwed teenage couple. In both her check-out with the preceptor and in the room with the patients, she remained respectful, family-centered, and encouraging. The physician said to the couple “A baby doesn’t see teenage parents. Baby sees mom and dad. Be that mom and dad.”


  Lisa Zak-Hunter, PhD, LMFT is Behavioral Science Educator/Clinical Assistant Professor at the University of Kansas School of Medicine-Wichita at Via Christi Family Medicine Residency. Her main clinical, teaching, and research interests lie in the realms of collaborative health care, increasing biopsychosocial understanding of mental and medical health conditions, and practitioner self-care. She has a particular interest in adult eating disorders. Within CFHA, she co-edits the Families and Health Blog and serves as Social Media Director. 

 

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