What Veterans Want Us to Know That We're Not Asking
HSR&D’s monthly publication Veterans’ Perspectives highlights research conducted by HSR&D and/or QUERI investigators, showcasing the importance of research for Veterans – and the importance of Veterans for research.
In the January-February 2023 Issue:
Homeless Patient Aligned Care Teams (H-PACTs) provide homeless Veterans with medical care, case management, housing, and social services to help them obtain and stay in permanent housing, which reduces their emergency department use and hospitalizations while improving factors that can contribute to chronic disease.
Homelessness has major implications for the individuals who experience it and for public health. Studies have shown, for example, that homelessness is associated with higher mortality, increased hospital use, and poorer overall health.
Recent research focuses on whether tailoring services for homeless people can engage and improve care for this population, and VA initiatives such as Homeless Patient Aligned Care Teams (H-PACTs) may improve patient experience and satisfaction. But understanding whether a new service makes a difference to a population depends on learning not just about the population’s experiences with the service but also about the health and social concerns of the population.
In responding to surveys, people experiencing homelessness sometimes offer comments that highlight health and social concerns that investigators failed to anticipate and that standard question batteries miss. Careful study of unprompted qualitative responses to a widely distributed survey can mitigate the risks of oversight, deliver a more holistic understanding of concepts queried in the survey, direct future inquiry, and enable researchers to better understand patient perspectives, which in turn can improve care.
This study analyzed the unprompted comments offered by Veterans—H-PACT clients with homeless experience—in the margins of a national, paper-based Primary Care Quality-Homeless Services Tailoring survey consisting of 85 close-ended items that covered health and social functioning as well as healthcare experiences. The survey was designed to solicit social and psychological experiences, health conditions, and patient ratings of primary care.
Of the 5,377 Veterans who responded to the survey, 657 (1 in 8) offered 1,933 unprompted comments across nearly all queried domains such as demographics, primary care, and social environment. Overall, respondents used comments to tell the research team when questions called for more nuanced response options—especially for sensitive topics such as substance use—by inserting, for example, “sometimes” or “not applicable” for yes/no questions and elaborating on negative and positive care experiences.
Researchers categorized respondents’ comments according to themes that emerged: primary care; social environment; substance use; homelessness; sociodemographics; and health, quality of life, and pain. On the topic of primary care, one respondent wrote:
"I have been trying to contact my healthcare pro for over a week now. Seven days ago, I filled out a request form to get a call or talk to her and I am still waiting. The nurse says it is on her desk, but nothing. That’s how the service is around here."
Some commenters praised their VA provider:
"To Whom It May Concern, [clinician name] is the best doctor I have ever had. It would be a shame if the VA was to ever lose her. She cares very deeply about her patients and is very devoted to meeting their needs. Please do whatever it takes to keep her on staff at the VA."
Survey respondents frequently commented on questions related to substance use, noting the specific substances they had used, for example, or explaining why they used alcohol or drugs. One Veteran wrote:
"Marijuana to ease with my pain. Because they took my pain meds."
Those who made comments about previously stopping substance use often noted when they had stopped, suggesting a value placed on recovery, which the survey items did not explicitly query.
"I am in AA four years. No drinking or drugs for 30 years. I think about alcohol every day, and what can happen if I start drinking again or pick up that first drink."
Questions related to pain also drew many comments. In response to a question on chronic pain, for example ("Do you currently have bodily pain that has lasted for more than 3 months?"), survey respondents often commented on the reasons for their pain: "Sciatica," "Screw in knee while in US Airforce," and "Arthritis in hands." They inserted additional detail on the length of time past 3 months, ranging from 1 to 46 years. When asked to rate the degree to which pain had interfered with their enjoyment of life on a scale from 0 to 10, some Veterans noted the activities they were unable to do, like sleeping or jogging. Many commented that their pain exceeded the maximum on the provided scale by noting, for example, "plus 4" or "11+."
Respondents offered a great deal of descriptive information on questions related to homelessness, and the study team recorded many (n=95) general comments not related to any survey item, such as compliments or complaints about the VA hospital or clinic where respondents received care.
Members of vulnerable populations want to provide additional detail about their lives and care experiences—particularly regarding complex topics such as pain and substance use—in ways that transcend the boundaries of close-ended survey questions. Adding an open-ended text response option, conducting qualitative interviews with a subset of respondents, and co-producing research tools with prospective participants could help ensure that surveys adequately capture the patient experience, and that analyses and dissemination of research data are relevant and patient-driven.
Varley A, Hoge A, Kertesz S, et al. What do Veterans with homeless experience want us to know that we are not asking? Health & Social Care in the Community. July 22, 2022; online ahead of print.
Drs. Varley and Kertesz were featured in an HSR&D podcast.
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