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Engaging Family Members in Adult Integrated Care Settings

Posted By Irina Kolobova, Jennifer Hodgson, Tuesday, September 02, 2014
For football teams to score points, multiple members of the team, such as the quarterback and the skill players (i.e., wide receivers and running backs) must work together with the support and direction of the coaching team. Similarly, in integrated care settings, the patient (quarterback), family members (skill players) and the healthcare team (the coaching staff) need to work together to meet treatment goals (score points). It requires the collaboration of all of these parts of the system. Without the skill players, the quarterback and coaching staff can design plays but may struggle to execute them. Similarly, without family members’ engagement, patients and healthcare providers may struggle to successfully meet treatment goals.
 

 

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

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

1.  Shifting our View

Family members serve as an extension of the healthcare team 

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

 

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

2. Engaging Family Members on Site

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

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

3. Reaching out Beyond the Exam Room

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

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

 

4. Caring for the Caregiver

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

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

References


References marked with an asterisk (*) are highly recommended

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

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

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

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

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

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

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

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

 

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