We are researchers working to understand the context of caregiving.
Our hope is to intervene in supportive, context-sensitive ways to improve outcomes for both patients and caregivers. We have met with close to 100 caregivers of advanced heart failure patients and seen inequities in action.
Here’s what we’ve learned so far.
Caregiving experiences vary
The experiences and outcomes differ by caregiving relationship, degree of illness, identity, and many social determinants of health. For example, caregiving is highly gendered, with women comprising 60 to 80 percent of caregivers.
A recent study reported that Black caregivers are more likely than White caregivers to provide over 40 hours of care per week. Black caregivers also experienced higher financial strain, but were less likely to report emotional difficulty. While these findings may seem counter-intuitive, research suggests that culture may play a role in how caregivers describe their experience, particularly of burden.
A call to action
The American Heart Association (AHA) wrote a call to action detailing the role structural racism and inequity play in cardiovascular disease. These concerns extend beyond patients to their families and caregivers as well.
We cannot understand disparities in caregiving if we do not consider what structural influences create unjust and avoidable differences in health outcomes.
We as researchers must ask questions that expand our understanding of the disparities caregivers experience as well as those that patients experience, considering multiple domains of racism (structural, interpersonal, cultural and anti-Black). We cannot understand disparities in caregiving if we do not consider what structural influences create unjust and avoidable differences in health outcomes.
Guiding principles to conduct equitable research with caregivers:
In light of the challenges that our field faces in conducting equitable research with caregivers, we suggest several guiding principles:
#1 Commitment to respect and establishing trust.
The research team, from study coordinator and recruiter to interventionist and principal investigator, must treat caregivers with respect. Not simply respect for their role as a caregiver but also for their time, viewpoints, and values. The commitment to respect develops trust between the caregiver-participant and the entire study team.
#2 The caregiver is the expert on their own context, values, and experience.
In the same way clinicians may prescribe treatments that are not feasible for their patients because they do not fit the context of their lives (for example social or financial), we must be conscious of the context of caregivers’ lives as we build interventions. Understanding context is essential to finding solutions that work for families in their homes.
#3 One size does not fit all.
Our interventions need to be tailored, person-driven approaches to engage with individuals of different genders, races, financial circumstances, and other social determinants of health. That means we must balance research fidelity with humility and responsiveness to needs.
#4 Equity does not mean “more intervention,” it means “thoughtful intervention.”
Our goal is to thoughtfully supports caregivers to live their healthiest lives in ways that are meaningful to them. Equitable research occurs when we respond to the context and needs of a caregiver in a thoughtful and deliberate manner. It may mean more resources are provided, but is not solely defined by quantity.
Looking forward
As our community works to promote access to and engagement in opportunities that help people live their healthiest lives, we hope these thoughts will guide tailored and scalable research with caregivers.
Caregiving is a complex experience of joy, challenge, reward, and burden, situated within structures that create the fabric of our society. Our work can honor that complexity, while helping dismantle structures that create inequity to improve the caregiving experience.
This blog is a part of the “Dialogues in Health Equity” series by the Health Equity Faculty Interest Group. They are committed to decreasing health disparities experienced by local and global communities by promoting social justice and health equity through nursing practice, research, education, and service.
Read more:
- Death and Dying, with Cultural Humility
- Providing Clarity on Health Care
- Q&A With Dr. Kupiri Ackerman-Barger: Skills to Become Equity-Minded
- Addressing Social Determinants of Health: A Nursing Imperative to Achieve Health Equity During the COVID-19 Pandemic and Beyond
ABOUT THE AUTHOR: MARTHA ABSHIRE SAYLOR
Martha Abshire Saylor is an assistant professor on the research/education track at the Johns Hopkins School of Nursing. Her clinical experience in cardiac and critical care has been the foundation of her teaching, and she earned the 2020 Teaching Excellence Award from the Johns Hopkins Nursing Alumni Association. Her research interests include an emphasis on psychosocial sequelae of advanced illness, advanced heart failure management, biomarkers of stress, and patient-reported outcomes. Dr. Martha Abshire Saylor has current funding to develop interventions that use a strengths-based approach to support caregivers through goal-setting, instrumental and social support. Dr. Martha Abshire Saylor has methodological expertise in using mixed quantitative and qualitative methods to understand complex phenomena. In addition, Dr. Martha Abshire Saylor is a collaborator on several studies with faculty at the Johns Hopkins Schools of Medicine and Public Health that examine palliative care and end of life decision making.
ABOUT THE AUTHOR: CATHERINE CLAIR
Catherine Clair, MHS, is currently a PhD student in Health, Behavior & Society at The Johns Hopkins Bloomberg School of Public Health (JHSPH). After graduating from JHSPH in 2017 with an Master of Health Science in Mental Health, she worked as an analyst at the National Committee for Quality Assurance (NCQA) in their Performance Measurement and Research departments. After seeing the challenges experienced by older adults and their caregivers in navigating the health care system during her time at NCQA, she returned to Johns Hopkins to pursue further education in promoting person-centered care and research for these populations. She is currently co-advised by Dr. Amy Knowlton and Dr. Karin Tobin at JHSPH for her PhD training.
