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Systemic Interventions for Families of Children with Autism Spectrum Disorder

Posted By Katy Oberle, Thursday, May 11, 2017

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

References/ Recommended reading:

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

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

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

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

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

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

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

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

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

 

 

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

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Playing in Primary Care

Posted By David Haralson, Tuesday, April 25, 2017


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

 

Why Play is Important in Primary Care Settings

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

 

Gingerbread Person

Supplies

Paper with a blank gingerbread person
Clipboard
Small box of crayons


Instructions:

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

 

Doctor's Toy Kit


Supplies:

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


Instructions:

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

 

Play Dough


Supplies

Mini-play dough 

Instructions:

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

 

 Health Book


Supplies:

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

Instructions:

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

 

 Drawing with Teenagers



Supplies:

Plain white piece of paper
Clipboard
Pencils or color pencils


Instructions:

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

 

 Bonus Activity*


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

Tying it all Together

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

 

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

 

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Pain and Acceptance at the End of Caregivers’ Hopes

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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



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

 

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Where There’s Smoke, There’s Fire

Posted By Kaitlin Leckie, Kristine Miller, Wednesday, February 15, 2017

 

During the 2015 CFHA conference plenary, Vincent Felitti likened poor health behaviors (e.g., smoking cigarettes; IV drug use; overeating) to the smoke in a house fire. If you see the smoke as the problem, and use fans to blow the smoke away, you will not only fail to put out the fire, you will fan the flames. Treating poor health behaviors as the primary problem, without attending to the real underlying issue(s), will have a similar effect, according to Felitti.

 

Felitti’s analogy reminds me (KL) of the Process Model of Addiction and Recovery (Harris & Tabor-Wilkes, 2011), whereby the desire to cope with negative feelings caused by underlying pain (be it spiritual, emotional, relational, physical, etc.) drives the decision to adopt an unhealthy or compulsive behavior (e.g., hoarding, smoking, IV drug use, alcohol, overeating). While this behavior may provide an instantaneous but short-lived rush of relief, the resulting feelings of shame and guilt are longer lasting. This perpetuates the experience of pain, thereby re-starting the cycle.

 

The pain that people are trying to overcome often began in childhood, as a result of what Felitti, Robert Anda, and their research team (1998) call Adverse Childhood Experiences, or ACEs. The main categories of these experiences include household dysfunction, neglect, physical abuse, psychiatric disorder of a parent, parental substance abuse or incarceration, childhood maltreatment, and sexual abuse. These experiences can be objectively scored on a questionnaire. Scores range from zero to ten. Ten indicates that the respondent experienced an event in each of the ten categories at least once.

 

An ACE score of four or more (at least one event in four different ACE categories) correlates strongly with increased prevalence of chronic disease in adulthood, as well as a high prevalence of multiple unhealthy lifestyle behaviors, such as smoking, IV drug use, and promiscuous sex (Felitti et al., 1998). In a sampling of findings from the longitudinal ACE study, Felitti and Anda (2010) summarize other strong and significant relationships of ACE scores to biomedical disease, psychiatric disorders, unhealthy behaviors, and healthcare costs.

 

During the plenary, Felitti highlighted that people who are seeking to relieve their pain are mostly interested in feeling relief as quickly as possible. They typically are not thinking about the long-term consequences of their choice. Hence the ineffectiveness of telling a smoker about the likelihood of future lung disease. Instead of inducing behavior change, the response is akin to: "Smoking provides me relief right now, which is what I need.” Until the underlying pain is addressed/treated, the likelihood of people being willing to change an unhealthy behavior they have adopted to help them cope is pretty slim.

 

Aside from understanding this truth, successful intervention should rely on a multi-faceted approach; comprehensive and integrated health care is an ideal way to address and treat pain from the past. Yet, we can do better than that. Particularly in primary care/family medicine, we train clinicians to be proactive, not merely reactive. As such, prevention of ACEs is vital for individual, family, and population health.

 

At our primary care clinic, Southern Colorado Family Medicine (SCFM), the proactive approach we developed to prevent ACEs for our patients is called SCAN: Score, Connect, and Nurture. First, we educated our entire clinic staff about ACEs and then trained our clinicians how to talk to patients about ACEs. We now assess ACEs in expectant parents and parents of 0-18 year old patients, focusing our efforts on breaking the cycle of ACEs often observed across generations. We perform universal assessments on this targeted population because ACEs affect everyone, regardless of sociodemographics. We educate parents about what having experienced ACEs means for their health and what can be done to try to decrease the risk of their children going through some of the same experiences.

 

The SCAN intervention centers on meeting participants where they are. For example, with parents who have experienced ACEs, the clinician normalizes and explains that some people feel they have overcome some of their difficult experiences from childhood but may feel "tripped up” by others. To help meet their specific needs, all families are offered resources by a family resource specialist, a social worker embedded in our clinic by a local community resource organization. Examples of resources offered include parenting education and support with home visits by a community-based parenting specialist, financial assistance, children’s books, and mental health treatment referrals.

 

Of the many success stories we have had throughout the year, one example that stands out is one of our first SCAN families. This couple was expecting their first baby while facing multiple psychosocial concerns. In addition to having minimal social support, they were being evicted from an apartment that was later condemned. Of the ten main categories on the Adverse Childhood Experiences questionnaire, the expectant mom endorsed 9 of them, and the soon-to-be father had experienced all ten ACE categories, a score of 10 out of 10.

 


 

Yet, their ACEs scores and their struggles represent the beginning of their SCAN story, not the end. Both parents also scored highly on a measure of resiliency--also part of the SCAN intervention--indicating they were resourceful and skilled at successfully overcoming challenges. They were scared and voiced a strong desire to parent their child differently than they themselves had been parented. They were motivated to get help in order to be the parents they wanted to be to their child. We provided them with a supportive and understanding healthcare environment, and our Family Resource Specialist linked them with several resources to boost their confidence and enhance their skills.

 

Ultimately, we assisted them in locating safer housing, helped him get a new job, connected them with mental health services, and enrolled them in a parenting education and home visiting program for continued support after the baby was born. The impact of the SCAN intervention, including their perception of our healthcare environment as safe and accepting, was made evident when, after a later traumatic event occurred, they returned to our clinic to seek additional care and support.

 

The adoption of unhealthy behaviors is not the only explanation behind the strong connection between ACEs and later development of chronic disease, as pediatrician Nadine Burke Harris explains in her TEDMED talk on the profound ways in which the ACE study changed her clinical practice. Even so, reframing our way of looking at unhealthy behaviors--not as problems themselves but as adaptive solutions to problems--broadens our perspective and increases the likelihood with which we are able to intervene and help patients to adopt healthier behaviors.

 


References and suggested resources:

www.acestudy.org

http://www.cdc.gov/violenceprevention/acestudy/

Burke-Harris, N. (2014). How childhood trauma affects health across a lifetime. TEDMED 2014.

Felitti, V. J., & Anda, R. F. (2010). The relationship of Adverse Childhood Experiences to adult medical disesae, psychiatric disorders, and sexual behavior: Implications for healthcare. In The Hidden Epidemic: The Impact of Early Life Trauma on Health and Disease. Ed. Lanius, R. & Vermetten, E. Cambridge University Press.

Felitti, V. J., et al. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences Study. American Journal of Preventive Medicine, 14, 245-258.

Harris, KS, Smock SA, Tabor Wilkes, M. (2011). Relapse Resilience: A Process Model of Addiction and Recovery. Journal of Family Psychotherapy 22 (3), 265-274.



Kaitlin Leckie, PhD, LMFT, is the Director of Behavioral Medicine at the University of Texas Medical Branch’s Department of Family Medicine in Galveston, Texas. 

Kristine Miller, D.O., is a faculty physician in Pueblo, Colorado, at Southern Colorado Family Medicine Residency, where she serves as the Clinic Director and Director of Osteopathic Education. 

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Make Family Great Again

Posted By Matthew P. Martin, Tuesday, January 10, 2017

 

According to the U.S. Census, 87% of Americans live with a family member. That’s 8.7 out of 10 human beings in the U.S. living with a loved one. That’s huge! Let that sink into your brain for a moment. That means that most of us are sharing a house, a condo, an apartment, or other dwelling with someone we consider to be "family”, however you define it. In the words of Joe Biden, "That’s a big … deal”. My goal is to convince you that the family should be at the heart of our health care system but that evil forces are conspiring to kick it to the curb in favor of "population health” and "community” (I’m dramatically using both of my hands to make these air quotes).

 

Family relationships impact your health. Did you know that family dynamics can even lower glycated hemoglobin levels and increase knowledge of chronic disease like diabetes? It can even predict the body mass index of youth! Imagine a doctor prescribing family time like a drug. "And one more thing, Mr. Martin. I’m prescribing you 20 mg of quality communication with your wife. There may be some side effects like loss of football knowledge and increased libido but you should be okay.”

 

Despite this evidence, family-centered care is much more the exception than the norm. Even though many medical clinics emblazon the words "family care” on their door sign, you would be hard pressed to find physicians who encourage bringing family members to an appointment or who even ask how family life is affecting your health. Usually "family care” means that the physician can treat anyone in your family; just don’t expect the doctor to ask a patient what his wife thinks about his smoking.

 

It wasn’t always this way. In the famous painting "The Doctor” by Sir Luke Fildes (1891), a general practitioner sits all night with parents whose daughter is sick from an infection. Sure it’s a romanticized ideal, but house calls in the past probably included a conversation with the rest of the family. An astute doctor making a house call would collect more health information in 30 seconds than in three medical appointments. Fun fact: in 1949, this painting was used by the American Medical Association in a campaign against a proposal for nationalized medical care put forth by President Harry S. Truman. How times have changed!


House calls aside, we have lost our way in this post-family 21st century of self-driving cars and 3-D printers. The family has been cast aside in favor of the greater neighborhood and community. Public health officials and policy wonks dream of a health care machine that looks beyond the tight-knit relationships of family units to broader systems of "population health”. This globalist view maligns the bi-directional influence of family dynamics and health and supplants it with a broad focus on systems that are too big for any medical exam room.

 

It’s time to bring health back to the family! Imagine a health care system in which nurses inquire about blood pressure as well as marital pressure. Imagine a system in which physicians ask how the newly diagnosed diabetes is affecting family meals or how the adult children can help the patient manage stress better. That is the kind of system that will make family great again and lower health care utilization and costs. That is the system that leads to winning, so much winning that you may get tired of it and say to your physician, "Doctor, please, we’re tired of all this winning”. And she’s going to say, "I’m sorry but we have to keep winning”.

 

Now, a word of caution: the other side will attempt to convince you that the family is passé and that the future is the "population”, the "community”. They will cleverly concede that the family was instrumental in helping our pre-industrial progenitors but that now is the time for the physician to look beyond the family and into a patient’s "community”. They believe that it takes a village to care for your sickly grandfather and not the adult children. They believe your neighborhood is going to give you a hug and encourage you to cut back on your drinking. They believe in population health, not family health. Little do they know, the family is the basic unit of any population. Strong families lead to a strong population. It’s a beautiful thing, am I right? Of course I’m right.


Here are two ways to make the family great again in our healthcare system. First, family caregivers need more support and attention. Most patients want to stay at home and be cared for by a loved one, but this presents financial and medical challenges for caregivers. Insurance companies should make it easier for caregivers to be trained and compensated for their time. Not only does this save money for society, it improves the patient’s quality of life.

 

Second, researchers need to determine the best practices of family-centered care and educators need to teach these practices to healthcare professionals. Right now, we have a strong group of cheerleaders championing family-centered care but no clinical competencies and evidence-based teaching strategies. We need family champions, but we also need a big, beautiful wall of evidence that family-centered care works.

 

We need to drain the swamp of public health and policy centers everywhere and get "Big Data” out of the healthcare system. If not now, then when? If not us, then who? Please join with me in bringing health back to the family, back to the basic unit of society. Thank you and God bless.

 


Matt Martin, PhD, LMFT, serves as the Director of Behavioral Medicine at Southern Regional AHEC in Fayetteville, NC. He is the CFHA Blog Editor. 


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What You Don’t Know Can Hurt Your Patients

Posted By Lisa Zak-Hunter, Wednesday, December 14, 2016

 

NOTE: in an earlier blog, I addressed how personal definitions of family impact care (explicit biases). Therefore, this blog focuses only on implicit biases.

 

A physician was in disbelief. He anchored himself in the belief that people were not inherently better or worse than others based on factors such as gender, race, disability, sexual orientation, religion etc. Yet here he sat, faced with his online score on the Implicit Association Test (IAT) hosted by Harvard University. It read: strong preference for light skin over dark skin. He struggled to comprehend what this meant. Deep down, was he racist? He so firmly believed otherwise, that he didn’t understand how to comprehend the results and what it meant for how he practiced.

 

Stereotypes surround us. They are the learned associations between a characteristic and a social group. They may be true at a group level but inaccurate individually. For example, most people in Kansas City are Royals fans but some may be Cardinals fans. Although some stereotypes are benign, there are a number of stereotypes that are more contentious and have implications related to power, equity, safety, and legal concerns. Explicit bias refers to the stereotypes one readily acknowledges that they hold. "I believe women are more nurturing than men”.

 

By contrast, implicit bias refers to the stereotypes or associations that occur unconsciously or outside of conscious control. They develop early based on reinforced social stereotypes. For example, implicit beliefs about race are established in childhood whereas explicit beliefs change with age1. By definition we are ignorant to our implicit biases and not immune to their power. Simply knowing a stereotype can distort information processes, despite self-reported beliefs. For example, college students’ implicit race bias did not impact self-reported egalitarianism, but did predict friendliness towards Black students.2 Students who thought they felt Blacks and Whites should be treated equally, were not, in fact, as friendly to Black students.

 

What are the implications for healthcare delivery? The literature on bias and physician decision making reveals that even when physicians endorse no explicit negativity to various groups, they still hold a number of implicit biases such as: Blacks were associated with being uncooperative, especially regarding procedures, Whites were linked with greater compliance, and obese persons were correlated with negative words such as lazy, stupid, or worthless.3-5 If physicians have these biases but don’t realize it, what impact does that have? It’s hard to completely tell, but we do see that patients view physicians more negatively, and physicians make different assessments and treatment choices.

 

For instance, even if physicians think they hold little race bias but have high implicit race bias, Black patients rate them as less team-oriented, friendly, and warm.6 If patients have negative perceptions about their physician or their ability to establish a relationship with their physician, how likely are they to adhere to treatment regimens or return for follow-up appointments? Other examples indicate that elderly patients are offered less treatment than younger patients for depression and suicidality, or women are less likely than men to receive knee arthroplasty when indicated. These findings have led some to propose that implicit biases are a contributing factor to health disparities.7

 

An area of research that has yet to be explored is family composition or constellation bias. This is a term I coined to refer to the type of bias about who makes up a family or who is ‘in’ a family. Nuclear family bias has been examined in stepfamily research, but this term fails to address parental sexual orientation. Traditionally, the preferred family is a heterosexual married couple with children.

 

Based on the research of other forms of bias in healthcare, it would not be surprising if provider implicit bias about who should be in a family would impact how they work with that family. I argue this could have important implications for relationship building, treatment adherence, assessment, and treatment choice- similar to what the literature indicates with other implicit biases. Even providers who ascribe to the notion ‘the patient defines their family’, may have some strong implicit biases that negatively impact their care.

 

What are some ways to address this?

1. Accept your implicit biases. Respect they impact your work. Understand they come from reinforced stereotypes. The more you see a stereotype- in the clinic, on the news, with friends, at the movies etc, it reinforces the stereotype.

2. Address the source of implicit biases: stereotypes.

a. Be mindful when you encounter a stereotype and call it out as such. There is power in making the implicit explicit, moving the unconscious to conscious.

b. Commit to learning.

i. Read the research. For example, what ARE the outcomes for children raised by gay or lesbian parents?

ii. Get connected with local community centers, churches, organizations that support different forms of family. Have a liaison speak to your organization.

iii. Stay humble and curious. Don’t assume. Always ask about personal experience.

iv. If you don’t already, try letting the patient define who is ‘family’. Ask how family members should be included in care. This may get tricky with legal concerns, documentation, or space concerns (how many people can we realistically cram into an exam or labor and delivery room?).

c. Be careful about venting. Venting has the tendency to reinforce stereotypes and feed implicit biases.

3. Do your own work or provide a space for others to do theirs.

a. Make your own genogram complete with all the relationship connections- many a genogram look like a defensive coordinator’s playbook. Examine how your experiences shape your understanding about family.

b. Think about the types of families you encountered growing up. What were your impressions of them/how were they discussed? How did that inform your thoughts about ‘family’? Where did you learn what makes a ‘preferred family’ vs. a ‘non-preferred family’?

c. If you work in a training facility, consider a lecture or didactic on this topic.


References

1. Baron AS, Banaji MR. The development of implicit attitudes. Evidence of race evaluations from ages 6 and 10 and adulthood. Psychol Sci. 2006;17(1):53–8.

2. Dovidio JF, Kawakami K, Gaertner SL. Implicit and explicit prejudice and interracial

interaction. J Pers Soc Psychol. 2002; 82(1):62–8.

3. Green AR, Carney DR, Pallin DJ, Ngo LH, Raymond KL, Iezzoni LI, et al. Implicit bias among physicians and its prediction of thrombolysis decisions for black and white patients. J Gen Intern Med. 2007;22(9):1231–8.

4. Sabin JA, Rivara FP, Greenwald AG. Physician implicit attitudes and stereotypes about race and quality of medical care. Med Care. 2008;46(7):678–85.

5. Schwartz MB, Chambliss HO, Brownell KD, Blair SN, Billington C. Weight bias among health professionals specializing in obesity. Obes Res. 2003;11(9):1033–9.

6. Penner LA, Dovidio JF, West TV, Gaertner SL, Albrecht TL, Dailey RK, et al. Aversive racism and medical interactions with Black patients: a field study. J Exp Soc Psychol. 2010;46(2):436–40.

7. Chapman, EN, Kaatz, A, Carnes, M. Physicians and implicit bias: How doctors may unwittingly perpetuate healt care disparities. J. Gen Intern Med. 2013 28(11) 1504-10.


Lisa Zak-Hunter, PhD, LMFT is Assistant Professor and Coordinator of Behavioral Science at St. John’s Family Medicine Residency at the University of Minnesota Department of Family Medicine and Community Health. Her interests include family healthcare, practitioner wellness, resident education, and the impact of trauma and adverse events on health outcomes and point of care interventions to address these. Within CFHA, she co-edits the Families and Health Blog and serves as Social Media Director.



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Fair Winds and Squalls: The Health Impact of Family Legacies Across the Lifespan

Posted By Alexandra E. Schmidt, D. Scott Sibley, & Caroline Dorman , Tuesday, November 29, 2016

 

As we prepared to present this topic at CFHA 2016, our team quickly realized that the therapists in the group used the term "family legacy” while our physician colleagues used the term "family culture” to describe how families impact health. We began to wonder, are they the same concept? Related? Totally different? How could we apply both concepts in our clinical work to connect better with patients, improve quality of life and daily functioning, and work towards better health outcomes?

 

As Ernest Burgess wrote over eighty years ago, "Whatever its biological inheritance from its parents and other ancestors, the child receives also from them a heritage of attitudes, sentiments, and ideals which may be termed the family tradition, or the family culture.” Family culture encompasses values about what’s important, what behaviors are acceptable, and what our relationships should be like. We believe family culture extends beyond parents and children to extended family interactions and families of choice, those not related by blood.

 

Patients’ decisions about how to care for themselves and how to engage with the healthcare system are infused with multigenerational cultural traditions. Family health culture provides the foundation for beliefs about the role of the patient and the role of the physician, value and meaning assigned to caregiving, causes of illness, and confidence to engage in health maintenance and improvement behaviors. Culture also shapes routine habits and behaviors related to eating, exercising, managing stress, and taking medications.

 

Beneficial or detrimental, we don’t get to choose our family health culture since it’s a composite of many family members’ beliefs and actions. We can’t change the foods placed on our childhood dinner table, the ratio of our parents’ active versus sedentary time, or how our families and communities have navigated difficult decisions about how and where to care for sick loved ones. As we acknowledge the role of family health culture, where do we honor the impact of individuals’ personal choice on health behaviors and beliefs?

 

Family legacies, on the other hand, emphasize how individuals take the past and craft it into current actions and use it to influence the future. As Boszormenyi-Nagy and Krasner wrote, "It is the task of the present generation to sort out that which is beneficial and translate it into terms of benefits for future generations.”

 

In essence, we funnel down the parts of our familial culture (beliefs, values, attitudes) that we wish to pass down to future generations to create a family legacy – in this case, our story about illness and wellness. Rather than passively receiving the habits and beliefs handed down to us, we have the ability to craft our legacy into a story we want others to remember. In addition, we can choose to emphasize health-related habits and beliefs that offer us the most options for a fulfilling life.

 

As healthcare professionals, what is our role in helping patients develop a healthier legacy? We recommend starting with one simple question: "If you were to change one aspect of how your family approached (or approaches) health, what would it be? How can I partner with you to work towards that goal?” Some patients might need to be prompted with areas for consideration, such as balancing work and self-care time, diet and nutrition, exercise, or communicating with healthcare providers.

 

The question could also be rephrased as: "What is one thing you learned from your family about how to take care of your health that has worked well for you? How has this been beneficial for you?” We also think it wise to begin asking these questions early with children, rather than wait until they are adults to reflect on healthy habits: "What is something you think your family does a good job of to be healthy and set up good habits? How can you keep up that habit?”

 

If we want healthier patients who use our valuable healthcare resources responsibly, we don’t have the luxury of ignoring familial cultural beliefs that influence their decision making and goals of care. We must take the time to inquire about patients’ beliefs and habits and how those are influenced by their family culture, even when we feel pressured with packed schedules and growing lists of clinical quality measures.

 

We must lead the conversation with patients in discussing how to harness the best parts of that family culture to craft a strengths-based legacy that bolsters personal purpose and growth, even in the context of disease, pain, and hardship. Although not the only way, we believe this approach provides a powerful starting point for helping patients and families enjoy as many days with fair winds as possible and have the stamina to endure stormy seas.

 

References

Burgess, E. W. (1931). Family tradition and personality. In K. Young (Ed.), Social Attitudes (pp. 188-207). New York, NY: Henry Holt.

Boszormenyi-Nagy, I., & Krasner, B. R. (1986). Between give and take: A clinical guide to contextual therapy. New York, NY: Brunner/Mazel.


 


Alex Schmidt, PhD, LMFT-A is an avid advocate of family-centered healthcare. She received her PhD in Marriage and Family Therapy from Texas Tech University and completed a Medical Family Therapy fellowship at St. Mary’s Family Medicine Residency in Grand Junction, CO. She now works as an Integrated Behavioral Health Advisor for Rocky Mountain Health Plans, where she partners with primary care practices in strategic scheming and dreaming to sustain integrated behavioral health practices and puts her graduate school research skills to good use to track down relevant, practical resources for providers. 

D. Scott Sibley, PhD, LMFT, CFLE enjoys teaching and researches commitment in couple relationships. He received his PhD in Marriage and Family Therapy from Kansas State University. He completed an internship at the University of Nebraska Medical Center in the Department of Family Medicine. He is currently an assistant professor in Human Development and Family Sciences at Northern Illinois University. 

Caroline Dorman, MD attended medical school at Oregon Health Sciences University after receiving an undergraduate degree in Psychology. She completed her residency at St. Mary’s Family Medicine Residency in Grand Junction, CO. Post-residency, she modeled herself after Dr. Quinn Medicine Woman and practiced in the isolated town of Craig, CO, where she did a little bit everything including CBT and making house calls on horseback. She returned to St. Mary’s to teach and mentor family medicine residents, where she has been inspiring young physicians for ten years. Next year, she’ll enter a new phase of her career providing hospice care.  

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The Health Paradox Within Marriage

Posted By Jeremy Yorgason, Thursday, November 17, 2016

This post is a reprint of a piece from the Families and Health Blog. Click here for the original post.  

 

Health problems are generally seen as a stressor to those in committed, couple relationships. That is, when a partner becomes ill, it often puts a strain on the relationship through the ill partner (a) not being able to perform the same level of household chores, (b) losing time at work/earning money, (c) having to pay for doctor bills and prescriptions, (d) having less positive or increased negative mood, and (e) having fewer positive and more negative couple interactions. These stressors associated with poor health within couple relationships have been established in the research literature.


At the same time, there are a number of studies that have indicated paradoxical outcomes within couple relationships in the context of illness. For example, research has shown that some couples suggest that their relationship has become closer in ways because of one partner having diabetes, hearing loss, a disability, or arthritis symptoms. So which is the right answer? Does illness strain couple relationships, does it bring partners closer together, or can couples expect both strain and closeness? The answer may depend on how we view illness.


Our perceptions of illness provide the lens through which we see health challenges. From a health STRESSOR perspective, illness can present difficult challenges for individuals and couples. From a RESILIENCE perspective, some people are strengthened in their relationships when faced with illness challenges. In fact, some couples’ relationships may be stronger than they would have been had they not faced a health challenge together and bonded through that adversity.


Given that not all people respond to illness or health stressors the same way, and that some couples apparently develop stronger relationships through health adversities, what factors might more readily lead to "paradoxical” or beneficial results? Research suggests the following factors likely benefit couples:


- Having a strong marriage relationship prior to illness onset
- Communicating openly about health challenges
- Having empathy for an ailing spouse
- Having resources that can be tapped such as social support and appropriate medical care


Other studies suggest that being over-controlling and overprotective as a caregiving partner has detrimental effects.


Relationship resilience is possible among all couplesThere is so much more that we can learn about the bi-directional relationship between health and couple relationships. Future research ideas include examining partner flexibility in future life planning, relationship history of overcoming past challenges together, and whether healthy partners choose at some point during an illness to be committed to their relationship, to their partner, and to working through whatever may come regardless of the outcome. In short, the mechanisms of health challenges linked with stronger couple relationships are largely unknown.

 

From a clinical perspective, relationship resilience is possible among all couples wherein one partner or both are faced with health challenges. At the same time, the reality is that health problems are nearly always a stressor on couples. Perhaps the acknowledgement of stress with the willingness to pursue resilience in response to health challenges will provide hope and courage to struggling couples. Perhaps even relationships that are "on the rocks” or experiencing a pile-up of stressors can emerge stronger when faced with health challenges. Clinicians might specifically encourage couples to:


- Communicate regularly about the health problems, and the difficult decisions and topics they may face
- See themselves as collaborators in facing illness, rather than as being alone in the process
- Consider the illness as not being part of the ill person’s identity or the identity of the couple relationship
- Discuss what is helpful support, and what, if any, types of support might feel overinvolved or controlling to the ill partner
- Try to balance autonomy in the patient, while allowing appropriate dependence or interdependence between partners


Hopefully with the encouragement of healthcare professionals more couples facing serious illness will experience the health paradox within marriage.



Dr. Jeremy Yorgason is an Associate Professor and Director of the Family Studies Center within the School of Family Life at Brigham Young University. He is also a licensed marriage and family therapist in the State of Utah. His research is focused on marriage health in later life, with an emphasis on how couples manage chronic health conditions. His research often involves daily diary surveys as well as information from both spouses in the relationship. He has studied couple relationships in context of various health concerns including osteoarthritis, acquired hearing impairment, diabetes, arthritis, disability, and declines in self-rated health.

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Being a BFEF Mentor: Pathway To Fruitful, Ongoing Collaborations

Posted By Valerie Ross, Tuesday, November 8, 2016

 

"If you are interested in applying for the BFEF fellowship, the application can be found at the link here. You may also contact the fellowship director Kathryn Fraser at kathryn.fraser@halifax.org.”


The job of residency behavioral scientist is complex. I was lucky to have had a mentor when I started. This was an unusual circumstance. Most behavioral scientists work alone and training is limited. For example, one of my colleagues was simply handed a box of old teaching files as his/her orientation to the job.

 

About 7 years ago I was offered a chance to be a small group mentor for a new program: the STFM Behavioral Science/Family Systems Fellowship Educator Fellowship (BFEF). I felt honored and excited, and wondered what would evolve. It turns out that agreeing to be part of this effort has been one of the most rewarding experiences of my professional life. The BFEF is a year-long mentorship program for new behavioral scientists.

 

Since it began, more than 100 behavioral scientists have gone through the BFEF program. Fellows are coached in groups of four by two seasoned faculty mentors: a family physician and a behavioral scientist. Groups meet in person at two conferences, and monthly through conference calls. Co-mentors strive to support each other, while creating a space for professional metamorphosis for the fellows.

 

I have now coached two groups of fellows. Each year when I meet the new fellows they talk about struggling to create a professional identity and understanding the intricacies of the job. Throughout the year together we celebrate successes, provide basic curricular resources, problem solve around professional challenges, and help fellows develop a scholarly project.

 

By the end, having been initiated into a group of creative and committed educators, fellows are more confident in their professional identities. The mentees’ trust, vulnerability and appreciation have helped me to become a better teacher and more confident in my abilities as well. My co-mentors have also taught me to be more skillful as a leader and facilitator.

 

Over the years the roles of mentee and mentor give way to that of colleagues and friends. I treasure my connection with this growing community of dedicated people who share the vision of a more integrated and humane medical system, aspire to lead, and are always willing to listen and share resources. We continue to evolve and grow together in ways we never imagined.



Valerie Ross MS, LMFT, has been Director of behavioral science for the University of Washington Family Medicine Residency since 2003. Her academic interests include: relationship centered care, narrative medicine, direct observation for training residents in patient centered skills and self-assessment, complexity in primary care, and mind-body medicine. Her professional writing has focused on narrative ideas, direct observation, and complexity care plans. Lately, she has been enjoying exploring the application of theater improvisation in medical training (medical improv). She loves spending time with family and her wonderful 6yo golden retriever, playing cello, practicing yoga and meditation, and hiking in the beautiful Northwest.


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Creating Space: LGBT Patients and Families

Posted By Jess Goodman, Erin Sesemann, Wednesday, October 5, 2016

This post is a nod to the upcoming, opening plenary address at the 2016 CFHA Conference in Charlotte, NC. 

 

 

The health of children and adults who identify as lesbian, gay, bisexual, or transgender (LGBT) has the potential to be greatly impacted by their family, health care system relationships, and the broader context of where they live. The research tells us this can be done in both tremendously helpful and hurtful ways. Let’s take a deeper look…


Meet Jenna:

Growing up, it was common to have my mom accompany me and help me fill out forms detailing my personal information when I went to see my primary care provider. The forms provided my healthcare team basic background information like my demographics (i.e., gender, age, or ethnicity) and personal/family medical histories (i.e., history of smoking, heart attacks, or cancer). But, what if this basic information isn’t actually so basic? What if my mom didn’t really know everything about me? What if it’s because I couldn’t tell her everything about me?

Through all these background forms we completed in my childhood, I didn’t tell my mom that I’m transgender. I didn’t tell my mom I didn’t feel like a girl. I didn’t tell my mom that I wanted the world to know and see me as a boy. No one knew the emotional turmoil I kept inside me. No one knew about the anxiety and depression I felt every time I was called a girl. The sigh I breathed and how I hung my head every time I had to check the female box on my background forms.

 

This doesn’t reflect all family dynamics and reactions to children who identify as LGBT. There are many warm, accepting families that would adjust and support Jenna sharing her identification as transgender. They might listen and validate her struggles of being called, categorized, and labeled as female when she actually felt and considered herself male.

 

A supportive family might even walk with Jenna as she explores changing her name, preferring to be acknowledged by the pronoun "he” rather than "she”, wearing different clothes, or beginning hormone replacement therapy. They might, again, return with Jenna to the primary care healthcare team to help start the conversation about what options are available to address not only the physical symptoms, but also address the anxiety, depression, and lifestyle changes.

 

But what if our patients do feel similar to Jenna? What if our patients’ families are dismissive or rejecting? What if they don’t understand and/or wouldn’t accept their LGBT family members? Maybe there are some themes from Jenna’s story that do apply to our patients.

 

If so, are there ways we can communicate acceptance and safety in our offices to the LGBT community when they may be too afraid to start that conversation? Are there resources/handouts available to patients who might be secretly struggling? Are we, as the healthcare team, able to offer patients safe spaces to begin talking about the issues that so far they can only communicate about through their physical ailments?


At one primary care health care center, I spoke with a healthcare team that included 2 primary care providers (PCPs), a nurse, and case worker. Through this conversation I realized there are many small acts that healthcare teams are already doing that communicate care and support. This can be done in a more indirect approach, such as asking teens about dating both boyfriends and girlfriends at child-well checks, or it can be more direct, such as asking specifically about a patient’s sexual orientation in relation to their physical or mental health symptoms.

 

Within the family context there are also some ways that a healthcare team can intervene to help restructure the family’s communication about the patient identifying as LGBT. The specific intervention or treatment approach will differ based on the personality and preference of the PCP, nurse, or case worker but there are some general tips to keep in mind when attending to patients who identify as LGBT:

 

Barriers to Consider and Possible Interventions

LGBT youth can lack power within the family system to have control over their lives or access to their prescribed treatments

  • Gently ask LGBT youth about family reactions to their identity to assess for level of family rejection, if any, and related health risks
  • Ask questions such as: "Who are you out to”?
    • If out to family, "How has your family reacted to you coming out to them, or sharing this part of your identity with them”?
    • If not out to family, "What do you think is getting in the way of coming out to, or sharing this part of your identity with your family”?
  • Provide psychoeducation to families of LGBT youth about the health risks associated with lack of support for the youth based on sexual orientation and gender identity, and ways to be supportive and engaged4.5,6,7,8
  • Provide a safe, non-reactive space for LGBT patients to share through active listening and empathic statements
    • Become familiar with medical and behavioral health providers in your are that have experience working with LGBT populations
    • Provide information about LGBT community and support groups in your area that can offer peer support and mentorship
  • Based on age, safety, and level of independence of patient, it may be appropriate to help connect LGBT patients to public transportation, local community resources that provide transportation, or mail-delivered prescriptions, if appropriate and legal (Consult with PCP, pharmacist, and other health care providers as needed).
  • Refer patient and/or families to trained family therapy providers, strength-based support groups or peer counseling, and on-line credible resources for families of LGBT youth; follow-up with youth and families ongoing

 

LGBT youth and adults may remain in silence or denial about LGBT identity due to assumptions or fear of experiencing dismissive or rejecting reactions from the healthcare team, which may prolong physical and mental health symptoms

  • Display posters or flyers in your clinics that include LGBTQ youth, same-sex couples, and symbols1
  • Train all staff on LGBT health and competencies1
  • Offer single stall, gender- neutral bathrooms1
  • Include gender identity and sexual orientation in non-discrimination policies1
  • Allow patients to identify their sexual orientation and gender identity, as well as preferred name and pronouns on appropriate forms1
  • Develop office policy in compliance with local laws regarding confidentiality for un-emancipated minors1
  • Assess health history as a conversation, not a check list1
  • Treat sensitive topics, such as sex and substance use, as routine questions for all patients, using non-judgmental tone and body language1
  • With youth, use the mnemonic H.E.A.D.S.2 for taking social and behavioral history
  • Normalize questions about gender and sexuality, and don't make assumptions
    • Use questions and statements like:
    • I am going to ask you some questions about yourself and I want you to tell me how you feel, not how you think others see you or how others think you should feel. These are questions I ask all my patients.1
    • Are you attracted to boys/men, girls/women, or both? 1
    • How do you feel about your attractions?1
    • What words do you use to describe your sexual identity?1
    • What gender do you consider yourself to be regardless of what body parts you may have?1
    • How do you feel about your gender? 1

 

LGBT patients may lack a social support system due to family and/or community cultural values or religious beliefs that do not accept, tolerate, or embrace LGBT identification

  • Screen for support needs in a respectful way by inquiring about the presence and types of social supports of patients
  • Create opportunities for disclosure of relationships and supports, including respectfully inquiring about patients’ relationships with others accompanying them at appointments, keeping in mind it may or may not be family members or local friends/family
  • Connect patients with LGBT community resources and trained behavioral health specialists in LGBT care, as needed
  • Connect patients with supportive online/social media LGBT resources
  • Use validation and normalization statements to increase LGBT patients’ communion with others from the broader LGBT community and local healthcare center
  • Utilize Motivational Interviewing3 techniques to assess and promote different ways patients’ may exercise their agency within their context. Examples may include:
    • Use open-ended questions to help patients verbalize how they are making meaning about the possible discrepancies between their personal identification and cultural or family or religious values
    • Provide affirmations to patients’ strengths throughout the encounter, such as his/her courage to self-disclose in healthcare center

     

LGBT patients quit taking medications for symptoms (such as depression or anxiety) because they do not believe the medications will help treat the root of their problems (i.e., stress of identifying as a sexual or gender orientation minority, family rejection, community isolation, etc.)

  • Be respectfully curious about the reason they have stopped taking their medication
  • Provide validation for patients’ experiences without expressing agreement
  • Assess for possible additional personal or cultural biases related to medications that may inhibit their willingness to adhere to treatment (i.e., medication = disease, illness)
  • Educate patients on the health risks associated with stopping medication, stress, and lack of social support
  • Discuss alternatives to medication, including journaling, meditation, increasing activity levels, individual and family counseling, and offer LGBT community resources and supports

 

 

Think about a patient you’ve seen in the past that you may or may not have asked about their sexuality or gender identity. How did knowing or not knowing this information impact the care you provided? Were you curious about their sources of support? Did you make assumptions about the sources of support they had, or did you ask about it? How did it help to know the answer, or why do you wish you would have known?

 

If you didn’t ask about these things, what do you think got in the way? What do you think it will take for you to be able to ask these questions?

 

Regardless of our beliefs, we need to be prepared to have conversations that foster openness and understanding with all patients. The healthcare team is uniquely positioned to assess for social support needs and work with patients and their families or families of choice to access the care and services they need for whole health. Take a moment to think about your office and the ways you can better create a safe space for your LGBT patients and their families, help patients utilize social support for better health and healing, reduce the health disparities and discrimination, and promote every aspect of our LGBT patients’ health.

 

Additional resources for providers support LGBT adults and their social support networks:

- Fredriksen-Goldsen, K. I., Hoy-Ellis, C. P., Goldsen, J., Emlet, C. A., & Hooyman, N. R. (2014). Creating a vision for the future: Key competencies and strategies for culturally competent practice with lesbian, gay, bisexual, and transgender (LGBT) older adults in the health and human services. Journal of Gerontological Social Work,57(2-4), 80-107.

- Lim, F. A., Brown Jr, D. V., & Kim, S. M. J. (2014). CE: Addressing health care disparities in the lesbian, gay, bisexual, and transgender population: A review of best practices.AJN The American Journal of Nursing,114(6), 24-34.


Additional resources for providers supporting LGBT youth and their families:

- Ryan, C. (2009). Supportive families, healthy children: Helping families with lesbian, gay, bisexual & transgender children. San Francisco, CA: Family Acceptance Project, Marian Wright Edelman Institute, San Francisco State University.

- Ryan, C., & Monasterio, E. (2011). Providers’ guide for using the FAPrisk screener for family rejection & related health risks in LGBT youth. San Francisco, CA: Marian Wright Edelman Institute, San Francisco State University.

- Substance Abuse and Mental Health Services Administration (SAMHSA). (2014). A practitioner’s resource guide: Helping families to support their LGBT children. HHS Publication No. PEP14-LGBTKIDS. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014.

 

References

1The National LGBT Health Education Center. Caring for LGBTQ youth in clinical settings. Retrieved August 8, 2016 from http://www.lgbthealtheducation.org/training/learning-modules/

2Goldenring, J. M., & Rosen, D. S. (2004). Getting into adolescent heads: an essential update.CONTEMPORARY PEDIATRICS-MONTVALE-,21(1), 64-92.

3Miller, W. R., & Rollnick, S. (2012). Motivational interviewing: Helping people change. New York: Guilford Press.

4The National LGBT Health Education Center. Resources and suggested readings. Retrieved September 19, 2016 from http://www.lgbthealtheducation.org/lgbt-education/lgbt-health-resources/

5Bouris, A., Guilamo-Ramos, V., Pickard, A., Shiu, C., Loosier, P.S., Dittus, P., Gloppen, K., & Waldmiller, J.M. (2010). A systematic review of parental influences on the health and well-being of lesbian, gay, and bisexual youth: Time for a new public health research and practice agenda. Journal of Primary Prevention, 31, 273-309. doi:10.1007/s10935-010- 0229-1

6Ryan, C., & Chen-Hayes, S. (2013). 13 Educating and Empowering Families.Creating Safe and Supportive Learning Environments: A Guide for Working With Lesbian, Gay, Bisexual, Transgender, and Questioning Youth and Families, 209.

7Ryan, C., Huebner, D., Diaz, R.M., & Sanchez, J. (2009). Family rejection as a predictor of negative health outcomes in white and Latino lesbian, gay, and bisexual young adults. Pediatrics, 123, 346-352. doi: 10.1542/peds.2007-3524

8Ryan, C., Russell, S. T., Huebner, D., Diaz, R., & Sanchez, J. (2010). Family acceptance in adolescence and the health of LGBT young adults.Journal of Child and Adolescent Psychiatric Nursing,23(4), 205-213.



Jessica Goodman received her M.S. in Family Therapy from the University of Massachusetts in Boston. She is currently a Ph.D. Student in the Medical Family Therapy program at East Carolina University. Her present research goal is to develop an evidence-based integrated care protocol for the ED to reduce health disparities among minority and underserved populations experiencing diverse concerns in an emergency setting. 

Erin Sesemann is a current Ph.D. Student in Medical Family Therapy at East Carolina University. She has experience working in community mental health agencies, private practice, and integrated behavioral health care in primary care. She graduated with her M.S. in Marriage and Family Therapy from Oklahoma State University in Stillwater, OK.


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