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Through the Eyes of a Caregiver

Categories: Professionals

By Paige Salinas, MS, MHA, LCSW, CBIST, Learning Services

Through the years, research has shown that caregivers experience burnout, depression, and anxiety which directly impacts their lives and the care of the brain injury survivors. What does caregiving look like through their eyes? Do they feel seen and heard? What are some things that we can do as healthcare professionals to assist with reducing these challenges?

The changes in roles, responsibilities, and relationships during one’s life can be challenging. Throughout the continuum of care from ICU to post-acute rehabilitation, there is a layer of education and support. However, what happens post-discharge from healthcare facilities? One-third of caregivers are at risk for significant psychological distress to include depression and anxiety, with additional risk factors for the caregiver including disability, unemployment, substance abuse, and amount of hours caregiving (Kreutzer et al., 2009). All of this can lead to poor self-care and deterioration of the caregiver’s health. When persons with brain injury are discharged to their homes, caregivers can often feel unprepared – they may lack knowledge of care needs, have minimal experience navigating the healthcare system, and be unsure of how to access necessary resources. The reality is that caregivers will likely be present in their loved ones’ lives long term as they continue to age with a brain injury. To that point, caregivers age as well and there is a need to ensure that both the individual with brain injury and the caregiver’s medical, physical, social, and psychological needs are met. Research indicates caregivers oftentimes neglecting their need for rest, physical activity, recovery from illnesses, missing their own medications, all of which compromising their own health (Reinhard et al., 2008).    

What can we do as healthcare professionals to mitigate this from occurring?

Discharge planning from healthcare settings should be more than disposition; it should be about support, counseling, and medical guidance for caregivers in addition to individuals with brain injury for (long-term planning) years post-rehabilitation. Multicomponent approaches to include individual and group interventions have shown to be effective with caregiver outcomes. These interventions include counseling, support groups, home visits, social supports, religious supports, and educational opportunities. COVID-19 has taught us a lot including ways to incorporate telehealth services for individuals with brain injury and caregivers. Providing opportunities to have telehealth services can allow for additional support and connection to the caregivers in the community specifically through counseling and support groups. In addition, respite care has proven to decrease depression in caregivers (Reinhard et al., 2008). As individuals with brain injury find purpose and become involved with volunteering, school, or adult day programs, caregivers can have more respite care.

Caregivers are present from beginning to end – not just through the continuum of care while involved in healthcare settings. It is our responsibility as healthcare professionals to equip them for long-term success. We need to find additional ways to support them and be mindful about asking them about what life looks like through their eyes.

Additional Resources

References

  • Kreutzer, J.S., Rapport, L.J., Marwitz, J.H., Harrison-Felix, C., Hart, T., Glenn, M., & Hammond, F. (2009). Caregivers’ well-being after traumatic brain injury: A multicenter prospective investigation. Archives of Physical Medicine and Rehabilitation, 90(6), 939-946.
  • Reinhard, S.C., Given, B., Petlick, N.H., & Bemis, A. (2008). Supporting family caregivers in providing care. Agency for Healthcare Research and Quality.