Aging adults from all backgrounds experience disability and reduced quality of life due to chronic pain. However, chronic pain outcomes are worse for older African Americans, who on average have greater pain severity and worse pain-related disability. While an abundance of research has identified pain disparities, relatively fewer studies explore how to best serve communities at highest risk.
Funded by the Helping to End Addiction Long-term® Initiative, or NIH HEAL Initiative®, researchers are exploring family support as a way to protect and manage chronic pain for older African Americans.
Clinical Insights Shape Research
Sarah Woods, Ph.D., Director of Behavioral Health in Family and Community Medicine at UT Southwestern Medical Center, was in the clinic when she became interested in the relationship between family relationships and chronic pain. As a family therapist, Woods says, “I noticed that patients visibly benefited from family support and understanding around how pain impacts quality of life.” This observation led her to design research to inform future interventions that leverage family support.
Other researchers are driven by clinical experience to study the effect of family on health. “As a nurse, you take a holistic approach to care, which includes the family as a patient partner,” says Woods’ colleague, Staja Booker, Ph.D., R.N., who is Assistant Professor of Behavioral Nursing Science at University of Florida College of Nursing, “Leveraging family structures could help mitigate some of the challenges that African Americans encounter when they are seeking pain care.” The team is using large, publicly available datasets to test how family support influences chronic pain risk and outcomes. These datasets – the Midlife in the United States (MIDUS) study and the Health and Retirement Study (HRS) – contain a wealth of information about the physical health, mental health, and social environments of older adults. Probing these massive and complex datasets for answers to specific research questions can be a lengthy and onerous process. Support from HEAL has enabled Woods and her team to dedicate time and personnel to do the work much more efficiently – as well as to search for new scientific questions in an understudied area of research.
What’s in a Name? Defining Family
“We do a lot of research looking at the impacts of marriage on health, but that’s not necessarily the most nuanced way to look at it,” Woods says. “We often ignore all the other kinds of relationships that we have in our lives: parents, kids, siblings, close friends we would describe as family.”
In their analyses, Woods’ team intentionally defines family broadly to capture close relationships between people that may not be related by marriage or blood. In family sciences, this idea is referred to as “chosen family” or “fictive kin” and acknowledges close social relationships based on other factors, such as a shared living space, economic ties, or emotional connection forged by other forms of interaction.
“If we're going to research family relationships, we need to know what that looks like within an African American population,” says Woods. “When we use more limited definitions of family, we not only ignore powerful relationships, but we are also ignoring possible sources of support.”
Traditional metrics to understand the effects of family on health rarely include extended family relationships, which may be particularly important for certain communities. It’s important to take an intergenerational perspective,” explains Booker. “Include the grandchildren or nieces and nephews, or other extended family,” says Booker. “Because then, the impact of the research is going to extend into communities. What we ultimately want to do is improve health for the population, not just for a small group of African Americans.”
Secondary Data Analyses Answer Some Questions, Raise Others
This research project was funded through HEAL’s support for secondary data analyses. Woods emphasized that using secondary data is a strategic initial step, as it allows her team to answer preliminary research questions that can guide culturally tailored research that includes perspectives from older African Americans with chronic pain. The researchers stressed that using general population data that was collected without their specific target population in mind allowed them to identify gaps and think about how to tailor the research methods in future studies. The research team calls this concept the 3Ms of secondary data analysis: misinformation, missing information, and missed information. “Secondary data can help us identify how we have been misinformed by data. It can also help us identify what’s missing from our understanding. It can also illuminate factors we have overlooked,” Woods says.
The overall goal of this research is to inform the development of culturally specific, family-based, intervention for chronic pain, which requires the voice of lived experience. “We can use some of what we learned from this data, but we also need perspectives from people who are experiencing chronic pain,” says Woods. Meaningful interactions are a key component of HEAL-funded research, toward developing effective interventions that overcome health disparities.
“The whole concept of aging while Black has been overlooked,” says Booker. Healthcare providers may assume that the health problems Black older adults experience are the same as for other groups, while this is not always the case. According to Booker, researchers need to listen to Black communities so they can better understand intergenerational experiences that shape how older African Americans approach aging and chronic pain.
The HEAL team hopes their research informs clinical interventions that take a highly personalized, whole-person approach to chronic pain treatment. For example, some patients have supportive families but are not open with them about how their chronic pain is impacting their life. In these cases, healthcare providers might discuss whether confiding in family could help improve a patient’s quality of life and even how they cope with their chronic pain. In other cases, patients may be embedded in stressful family relationships. For these patients, healthcare providers might discuss ways to reduce stress and increase family support.
The researchers also emphasized that there are different types of family support, including emotional physical, spiritual, and even financial. While the research will establish an arsenal of family-based pain management strategies, the most helpful type of family support will likely be different for each patient, says Woods.
“Ultimately, the ideal treatment strategy contextualizes research to meet each patient’s specific situation and needs.”