Imagine not being able to communicate effectively with your doctor, being misunderstood, and even devalued? The voices of patients matter in the creation of programs, services, and health care delivery — and yet often the patient voice is unheard or misunderstood, especially when language barriers and cultural barriers exist.
“We know from the literature and clinical experience that there are significant disparities in outcomes for Latinx rheumatoid arthritis patients,” says study author Anna Balakrishnan, LMSW, Social Work Researcher in the Inflammatory Arthritis Support and Education Programs, at Hospital for Special Surgery. Delays in receiving a diagnosis from a rheumatologist combined with communication gaps as well as cultural lens contribute to Hispanic/Latino(a)/Latinx patients with RA experiencing increased pain, fatigue, disability, and depression.
Balakrishnan and her colleague Adena Batterman, LCSW, Senior Manager, Inflammatory Arthritis Support and Education Programs and Patient-Centered Qualitative Research, along with researchers from the Global Healthy Living Foundation, set out to take a closer look at these communication barriers and better understand the unique education and support needs of Hispanic/Latino(a)/Latinx patients with RA.
“Patients benefit when providers customize care for their patients based on their needs,” says Balakrishnan. “We hope that the information learned through this study can help providers approach care in culturally tailored ways.”
About the Study
To better understand the patient perspective, researchers interviewed 17 Hispanic RA patients via Zoom – in either English or Spanish (depending on their preference). The questions focused on the impact RA has on their emotional health and family life as well as the level of support they have (and need), cultural influence of medication and illness beliefs, and their main barriers to care. Interviews were semi-structured permitting patients to share freely via a video call. Recruitment for patients is still in progress.
“Extensive research supports the need to include patients and patient input in the development of these types of programs early in the process,” says Batterman. “This study is an effort to incorporate and honor patient voices to inform all stages of this program’s development.”
After the interviews, the researchers analyzed the preliminary data and identified nine major themes.
- RA’s impact on emotional health (connected to pain, loss of roles and abilities, stress)
- Willingness to seek mental health care
- Medication and illness beliefs affecting patients’ approach to RA management
- Essential features of a good patient-provider relationship, such as trust, kindness, and consistency
- Value of participating in a support group
- Impact on family
- Patient experience of systemic barriers to care
- Varied preferences on structure and format
- Varied preferences on outreach strategies
The preliminary study findings were presented at the 2022 American College of Rheumatology Convergence (ACR).
“We’re looking forward to final data analysis…and incorporating these findings into the development of our program and sharing these findings with the rheumatology community,” says Balakrishnan. “This program will join our successful models of support and education interventions for people living with RA that are grounded in evidence-based practice and patient perspective.”
As researchers continue data analysis, they plan to provide culturally tailored support and disease-specific education for Latinx RA patients to support their self-management in ways most relevant to their experience, adds Batterman.
Be Part of Research with ArthritisPower
Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. Learn more and sign up here.
Balakrishnan A, et al. Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention. Arthritis & Rheumatology. December 2022. https://acrabstracts.org/abstract/patient-perspective-of-unique-support-and-education-needs-of-latinx-latinoa-hispanic-rheumatoid-arthritis-patients-implications-for-a-culturally-tailored-and-disease-specific-intervention/.