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Partnering with Oncology Providers and their Patients: Lessons Learned

Posted By Laura Lynch, Maureen Davey, Tuesday, January 21, 2014

(This blog post is a follow up to an earlier piece. To read the first post, click here)

We recently described our pilot study which was designed to evaluate an Emotionally Focused Therapy "Hold Me Tight” couple support group that was adapted with Dr. Ting Liu and Dr. Lydia Komarnicky to help couples in which one partner has been diagnosed with cancer. Our study’s design and recruitment strategies have required consistent collaboration with a diverse group of providers embedded in a busy oncology clinic. We believe that the lessons we have learned may be helpful to other medical family therapy researchers who want to help patients and families who are coping with a chronic illness like cancer.

We chose to partner with Drexel University’s Radiation Oncology Clinic for this pilot project for two reasons. Most importantly, this cancer center provides access to the patient population we wanted to study: racially diverse patients who are coping with cancer and their partners. Additionally, we had developed a positive working relationship with the staff and providers through previous oncology support group intervention studies; therefore, we felt we would be able to effectively partner with them again to conduct this study. When we explained the purpose of our pilot study to the staff and providers at several group meetings, and identified how it could benefit their patients, they were more than willing to help us get the word out and recruit patients in their oncology practices.

Due to HIPAA regulations (which protect patients’ rights to keep their cancer diagnoses and treatment private), our research team is not able to directly approach cancer patients about this study. So, our study is first being presented to patients by Drexel Radiation Oncology personnel, including oncology providers, social workers, family therapy interns, nurses, a creative arts therapist, and a nurse navigator. Once patients express an interest in the study and sign a waiver permitting their diagnosis and contact information to be shared with our team, they are contacted and screened for inclusion in the study. Our research team has had to maintain consistent communication with these busy providers who are recruiting for us. We do this through weekly email check-ins and reminders, and in-person meetings. We invite and incorporate feedback from providers as well. For example, we ask how to best support each of them in recruitment (e.g., how and when to best reach out to them for check-ins), and want to hear about cancer patients’ responses to the study when it is presented to them. The challenge of not being able to directly approach oncology patients is that providers are often very busy and study recruitment is not their first priority. Yet, the benefit of partnering with this multidisciplinary team is that patients are able to hear about the intervention study from trusted providers with whom they already have a relationship. In order to build rapport, engage, and join with cancer patients and their partners, the principal investigator (Maureen Davey) makes the first call to all patients after they sign the waiver to be contacted. She stays in contact with cancer patients and their partners by mailing cards, sending emails, calling, and sending text message reminders, based on the patients’ preferences. She also provides them with her contact information and makes herself available for any follow up questions or concerns patients and partners may have.

There are several challenges we have experienced conducting this ongoing study. Many of the patients at the clinic are of lower socioeconomic status, which can make consistent participation in a multi-week intervention study (6 two-hour bi-monthly sessions over a period 12 weeks) a challenge because of financial barriers. Additionally, the cancer and side-effects from treatment (e.g., fatigue, nausea) can interfere with regular participation. Therefore we have made it a priority to remove as many potential barriers as possible and remain flexible. We provide public transit tokens or parking validation for participants, as well as free childcare for participants’ children during the group intervention sessions. We received IRB approval to pay each individual participant 10 dollars ($20 per couple) per session for the 6 sessions, so they are given a small financial remuneration for their time. We also budgeted for food so we that we are able to provide snacks for participants during the sessions; we first ask participants for their food and beverage preferences and do our best to accommodate them. Before each support group begins, we ask all participating couples about their preferences for the days and times of the group (e.g., weekends versus weekday evenings). The scheduling of the group sessions is based on consensus. If a couple misses a session (e.g., the partner with cancer is too ill to attend because of the treatment side effects), we work with the couple’s schedule to do a makeup sessions so that they can continue with their cohort for the remainder of the intervention sessions. We believe that it is essential to warmly join, engage, and collaborate with all participating couples to ensure that we are serving their unique needs as much as possible.
Building successful partnerships will take time, flexibility, and patience

Regarding lessons we learned, we recommend that family therapy researchers who want to partner with medical systems need to first identify one or more medical providers who understand the importance of family therapy interventions and who can be a champion by helping the researchers make connections with other providers who have access to the patient population. Clinical researchers should meet with providers whenever their busy schedules allow and explain how the intervention can benefit both cancer patients and the providers. It is also essential to elicit ongoing feedback from providers in order to make any necessary adjustments to better partner with them. Inviting this ongoing feedback also lets providers know that they are valued stakeholders in the research process. Ultimately, building successful partnerships will take time, flexibility, and patience. As medical family therapy researchers, it is important to demonstrate to providers that you will not abandon them once your study is completed, but rather you will be a long-term partner with the goal of supporting providers and helping to meet the needs of the patients and their families. Before you start planning any study in a medical system, take the time to familiarize yourself with the system so you can understand how patients are assessed at intake and evaluated, as well as any potential barriers to treatment that need to be overcome. If medical family therapy researchers first take these steps and remain patient, flexible, and consistent, then successful collaborations with medical clinics are more likely to be successful and sustained.

Laura Lynch, M.S. is a doctoral candidate in her third year at Drexel University’s Department of Couple and Family Therapy. She received her Master’s degree in Marriage and Family Therapy at the University of Rochester. Laura’s clinical research focuses on developing interventions to help couples and families cope with chronic illness. In collaboration with Dr. Maureen Davey and Dr. Ting Liu, she is currently conducting her dissertation study to adapt and evaluate Hold Me Tight for a diverse sample of couples coping with cancer. She is also completing her doctoral clinical internship at Drexel Medicine’s primary care practice. Her research interests include addressing health disparities by developing culturally sensitive relational interventions, examining how chronic illness affects couple relationships, and children’s experience of parental illness, in particular parental cancer and diabetes.

Dr. Maureen Davey is a licensed marriage and family therapist in the state of Pennsylvania, an AAMFT approved clinical supervisor, and associate professor at Drexel University in the Department of Couple and Family Therapy. Her clinical research examines how different relational and cultural contexts contribute to the experience of health disparities. She has been the PI on several state level foundation intervention grants designed to develop culturally sensitive family interventions for families coping with parental cancer and is now working on securing funding to further develop the intervention with African American families coping with parental cancer. In collaboration with Dr. Ting Liu, Dr. Lydia Komarnicky, and Laura Lynch, she is currently conducting a pilot study to adapt Hold Me Tight for couples coping with cancer.

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