Interview: The untapped potential of family and peer engagement in healthcare
Family and peer engagement has emerged as an essential strategy to help improve outcomes, experiences, and affordability, especially for individuals with behavioral health and palliative care needs. Two clinical leaders share their perspectives on what’s behind this strategy – and what’s possible when healthcare organizations embed it within their business.
Healthcare organizations are recognizing the positive impact that family and peers have on healthcare experiences, outcomes, and costs. With the right guidance, both family and peers can provide a stabilizing influence, help individuals find necessary resources within the healthcare system, reduce stress, and improve treatment adherence.
Impacts like these are particularly powerful for individuals with behavioral health or palliative care needs. For those facing behavioral health challenges, family and peers can help their loved ones build resilience and navigate them to the support they need. Similarly, when individuals receiving palliative care have family member or caregiver support, they are likely to have a more comfortable experience, report higher satisfaction, and avoid the care that can erode both, such as visits to the ER or long hospitalizations.
In the interview below, two of our leaders with experience in these specialties —Clarence Jordan, CPS, MBA, Director of Clinical Programs within Carelon Behavioral Health, and Simeon Kwan, DO, MBA, West Region Medical Officer for Carelon Health Palliative Care — share why healthcare organizations are increasingly engaging family and peers to support members with serious whole-health challenges.
What roles are family and peers playing in an individual's care today?
Clarence Jordan, CPS, MBA, Director of Clinical Programs, Carelon Behavioral Health: Behavioral health often has a lot of stigma associated with it. A new diagnosis can be daunting. Many families and individuals believe the first and the worst thing when they initially receive a diagnosis. And often, a family may not fully understand what the individual is experiencing, who to turn to for help, or where to go to for additional information.
However, many families want to better understand how to navigate care, how to advocate for the individual, and how to help. That understanding often requires education or guidance, especially from a peer who’s been in that situation before.
Simeon Kwan, DO, MBA, West Region Medical Officer, Carelon Health Palliative Care: Typically, the role of family in an individual’s palliative care depends on whether the individual has the cognitive ability to make decisions about their care.
In cases when an individual has full cognitive abilities but is facing severe illness, like cancer or lung disease, family or caregivers serve in a supportive role because the individual is making their own care decisions. However, usually these individuals make care decisions in conjunction with their family or caregiver. This ensures everyone is on the same page to prevent misunderstandings about the individual’s wishes, should their illness progress.
On the other hand, in cases when the individual cannot make decisions, we rely on family and caregivers for decisions on advance care planning and directives. These are key care decisions, such as whether to pursue aggressive hospitalization and whether they want intubation or artificial feeding.
Why are healthcare organizations turning to family or peers to help improve experiences and outcomes?
Simeon Kwan, DO, MBA: Healthcare organizations who care for individuals with complex illnesses are realizing that individuals with serious illness don't want to be isolated. They need and want support. They want to feel connected. When healthcare organizations engage family or caregivers early in that individual's journey, the individual can better manage their illness and care decisions, as well as potentially see better outcomes.
When family and caregivers are better engaged, they can better support the individual in countless ways. For example, they can assist with administrative paperwork, navigate appointments, and provide emotional support to help prevent isolation or loneliness.
Engaging family and caregivers also enables them to become another set of eyes and ears to resolve health concerns early. For example, a family member may be the first to find a wound that needs to be addressed quickly to avoid complications. Once alerted to a problem, we can then address the issue and prevent it from worsening. The earlier we know of challenges or symptoms, the better care we can provide.
Clarence Jordan, CPS, MBA: Like Dr. Kwan mentioned, healthcare organizations are engaging family and peers to help bridge knowledge gaps and guide them to appropriate resources to navigate their situation for better outcomes. In a lot of communities, including communities of color or underserved communities with limited resources, mental health conditions and suicidal ideation can become an acute challenge. Many families dealing with a family mental health crisis have limited knowledge and awareness of the condition. They also may not be aware of the support systems available other than 988.
Simeon Kwan, DO, MBA: I'd also add, behavioral health and palliative care have a large overlap because individuals with serious illness may also have anxiety and depression. So, we often integrate different types of support based on the individual's situation into our care plans. This may include counseling or therapy as an adjunct to our social work teams. We may also find other community members to serve in support roles, such as a community spiritual leader, depending on the individual's needs.
How should healthcare organizations think about engaging family and peers? What's necessary to succeed?
Clarence Jordan, CPS, MBA: Health plans are in a particularly great position to take advantage of what family and peer engagement can offer. The trajectory of chronic illness is complex. For example, coping with a chronic condition, such as diabetes, may lead to behavioral health concerns, like depression or anxiety. A peer with lived experience can help a health plan better understand what an individual with a chronic disorder is experiencing. They can help plans understand the relationships between a person's physical and mental well-being and how to support their whole health for better outcomes in the long term.
Simeon Kwan, DO, MBA: Earning trust in the beginning is essential. As a palliative care provider, often we’re not initially part of an individual’s original care team, like their primary care provider. Instead, we’re viewed as a new service that's coming into a fragile time in the individual’s life. We have to quickly gain trust from the family and the individual and show we can help them. Otherwise, the individual may not fully rely on us or call when symptoms first arise. That might mean increased use of an emergency department.
The family’s or caregiver's trust enables us to guide them through the best path of care. It's vital for discussions on treatment decisions and goals. All these aspects require very early trust and buy-in. Without trust, the odds of success can diminish.
How does an individual’s social drivers of health and culture influence family and peer engagement?
Simeon Kwan, DO, MBA: Levels of care and support can vary dramatically based on an individual's life circumstances and their culture. For example, in some cultures that are patriarchal, male family members often make the care decisions. When a healthcare organization engages family or caregivers, they need to understand social and cultural dynamics to provide more effective treatment planning and care.
Clarence Jordan, CPS, MBA: The culture the individual was raised in, their age, their neighborhood, and their access to healthcare can impact engagement, care experiences, and outcomes. Often, there is little understanding of how the dynamics of various social drivers play in the life of the individual who is receiving care or receiving help.
Demographic and social-drivers data and insights are changing that, and they can guide and improve engagement efforts. They can also help to match an individual with a behavioral health condition to a peer who has had similar social or cultural experiences.
When healthcare organizations engage family or peers in an individual's treatment or healthcare plan, what positive impacts are possible?
Clarence Jordan, CPS, MBA: The positive impacts are numerous. Involving family and peer support in treatment plans can result in healthier communities overall. Individuals are better able to fulfill their life goals and make positive contributions to their community and society. Engaging family and peers in an individual’s treatment can also provide stability within the family, help generate a more positive outlook, and create a better healthcare experience.
Simeon Kwan, DO, MBA: Within palliative care, involving families when an individual faces a serious diagnosis can help prevent unnecessary hospitalizations. It also helps match the right level of care with what the individual and their family want. For example, younger individuals without extensive family support might have very different goals than those who are on the other spectrum of life and might not have as aggressive care goals.
Reshaping the healthcare experience through family and peer engagement
By acknowledging the importance of family and peer engagement, healthcare organizations are taking a proactive approach to support individuals serious health challenges. This trend of engaging family and peers is driven by a recognition that whole health encompasses not only clinical needs but also social and emotional well-being.
The collaborative efforts between healthcare professionals, individuals, and their support networks contribute to more personalized and effective care, and better healthcare experiences. As healthcare organizations increasingly embrace this inclusive model, there's a promising shift toward building trust, fostering resilience, and ensuring that individuals receive the ongoing and evolving support that they need.
