Nearly half of American adults have at least one chronic health problem —and whether their disease worsens rapidly or over time, many have spouses or children who tend to their needs. But how badly do those problems emotionally affect otherwise healthy caregivers? And does spirituality make things easier?
These are questions that an effort among Baylor entities could start answering within the year. Funded by a $50,000 Collaborative Faculty Research Investment Program (CFRIP) grant, a preliminary research study is jointly launched by Baylor Scott & White Health and Baylor University and involves a series of online and offline surveys to better understand how to improve the health of patient/caregiver pairs.
“Millions of Americans are afflicted by chronic disease, which are typically progressive in nature and are associated with reduced functional and/or cognitive abilities, as well as reduced quality of life,” said study authors, Kristen M. Tecson, PhD, graduate intern for STEEEP analytics at Baylor Scott & White Health and Lindsay R. Wilkinson, PhD, assistant professor of sociology for Baylor University, in the grant application abstract.
“As primary skills diminish, the need for assistance to complete daily tasks emerges… The struggle of watching a loved one decline, coupled with the time and financial burdens associated with being a caregiver pose a cyclical threat to the well-being of the caregiver and patient.”
While previous studies explored caregivers’ and patients’ health independently of disease type, this study would be among the first to look at the link between caregivers’ and patients’ well-being together from an aggregated perspective.
The Role of Religion and Other Factors
A custom-crafted survey sent to 75 patient/caregiver pairs (150 participants) will drive the project, and through survey responses, Dr. Tecson and Dr. Wilkinson hope to glean three things:
- The link between patient/caregiver well-being
- The association of chronic disease to that well-being
- The roles spirituality and other factors—such as age, gender, race and time since diagnosis—play in quality of life and coping
Previous research has linked spirituality with quality of life. In a 2014 study which appeared in the Journal of Religion and Health, subjects who chose religious counseling services self-reported improved quality of life compared to patients who chose non-religious counseling.
For many people, spirituality can represent hope, healing, peace, support and even an increased sense of community.
“[That study] reiterated the need to study spirituality as a potential factor of well-being,” Dr. Tecson said. “If/when the time comes to develop an intervention, we would want it to yield the best possible results, and for many people, spirituality can represent hope, healing, peace, support and even an increased sense of community. For these reasons, I suspect that a positive relationship may be detected.”
Intervening for the Benefit of Patient/Caregiver Pairs
Through statistical analysis of survey results, the researchers aim to build an intervention that improves patient/caregiver well-being. Similar studies have implemented such actions as encouraging journaling among patients/caregivers and offering religious-based counseling to patients who choose them.
This project would expand on those previous studies to potentially build new programming focused on patient/caregiver pairs.
“Developing an intervention will require intensive research at the conclusion of this project, but studies have shown that interventions ranging from 20-minute expressive writings to the more-intensive counseling sessions are effective at reducing anxiety and depression,” Dr. Tecson said. “Our study is unique in that it assesses the relationship of well-being between patients and caregivers, so we will need to determine whether the intervention will be most beneficial if developed for the pair or for the patient and caregiver individually.”
The Future of Patient/Caregiver Research
For now, the results of this pilot survey study will help inform those inventions down the road. But in the future, the researchers plan to continue exploring this topic—for the benefit of both the millions of Americans suffering and the millions more who care for them.
“After this preliminary year-long study is complete, we plan to submit to the National Institutes of Health for a grant that will enable us to develop and implement an intervention to increase the well-being of the participants,” Dr. Tecson said. “Additionally, I would like to raise awareness for this topic and make the survey tool available for use at other institutions.”