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The R2R team recently had the honor of interviewing Dr. Laurel Northouse, a researcher and practitioner who not only created an intervention to improve quality of life among men with prostate cancer and their caregivers, but who also conducted a pilot effectiveness study of implementing this program at a Cancer Support Community affiliate.

 

Dr. Northouse and her colleagues created the FOCUS program in 2007 and received high ratings on NCI’s Research-tested Intervention Programs website. More information about the program, and relevant materials, are available here. You can read more about the pilot effectiveness study published in 2016 here.

 

Scroll down to read more about Dr. Northouse’s experience creating, studying, and implementing this psychoeducational program, and chime in with your views in the associated discussion below.

 

 

Laurel L. Northouse, PhD, RN, FAAN 

Professor Emerita, School of Nursing, University of Michigan, Ann Arbor, MI

Dr. Laurel Northouse has conducted research with cancer patients and their family caregivers for over 25 years. Building on extensive experience conducting longitudinal and multivariate studies, Dr. Northouse and colleagues developed a psycho-educational intervention, called the FOCUS Program, to help cancer patients and their family caregivers cope with cancer and maintain their quality of life. The FOCUS Program has been tested for efficacy in three randomized clinical trials with patients and their family caregivers who were managing breast, prostate, lung or colorectal cancer. Based on the positive effects of the program on patient and caregiver outcomes across the series of trials (e.g., higher self-efficacy, better dyadic communication, more effective coping, less uncertainty about the illness, and higher HRQOL), they translated the FOCUS Program to an Internet-based delivery format. They also implemented the program in a small group format at the Cancer Support Community (CSC) in Ann Arbor, MI. and are completing another implementation study in two additional CSC sites in different geographical areas in the U.S.

 

Faculty website http://nursing.umich.edu/faculty-staff/laurel-northouse

Questions and Answers

Did you notice any difference in efficacy of FOCUS when tested in a clinical setting and effectiveness when used in a community setting?
It is difficult to compare across settings and studies because the characteristics of participants in the studies differed somewhat in terms of cancer type and stage. The interventionists’ professional background also differed. In our RCTs, FOCUS was delivered by nurses and in the implementation study it was delivered by agency social workers. However, the findings were similar. In both studies, aspects of quality of life improved (i.e., emotional well-being), perceived benefits of illness increased (i.e., finding meaning in the illness), and participants felt more confidence (self-efficacy) in their ability to manage the illness and caregiving after they participated in the FOCUS Program.
Were there any surprising findings or experiences in either your prior randomized clinical trials (RCTs) or implementation study of FOCUS?
A recurring theme across studies was that patients and caregivers had difficulty at times discussing cancer with one another. They often didn’t know what the other person was thinking or feeling. During our intervention sessions, it was common for the patient and/or partner to look at the other person and say, “I didn’t know you felt that way.” An important aspect of the FOCUS intervention is that patients and their primary caregivers are in the intervention together. It helped them to gain more understanding of one another and work better as a team. In our prior RCTs, we delivered FOCUS to individual pairs of patients and caregivers at home, but in our community implementation study we used a group delivery format (3-4 pairs or dyads per group). The reason we switched to the group format was that all of the programs in the community agency (Cancer Support Community) were delivered as groups, and our program delivery needed to be consistent with other agency programs. However, we were glad we moved to a group format because we found that the patients and caregivers really liked participating in the program with other couples/dyads. We found that the groups seemed to be more cohesive when participants were dealing with the same type or stage of cancer, but it wasn’t always possible to have that happen.
What were some of the challenges you faced in implementing this program in a community setting?
Recruitment is always a challenge and it was more difficult to recruit patients and caregivers (dyads) to a group program because of the difficulty in finding a common time for the group members (both patients and caregivers) to meet for six consecutive weeks. Another challenge was for agency staff, who were also excellent therapists, to follow the very structured evidence-based intervention protocol. They were used to running less structured support groups. We discussed the importance of following the intervention protocol so that FOCUS was implemented with fidelity consistently across therapists and groups.
Do you have any thoughts on what aspects of the program would be most appropriate for program managers to adapt? Which aspects should stay the same?
Originally, we thought that this program would always be delivered by nurses. But because of the implementation study, we now know that the program can be delivered very effectively by professionals from other backgrounds such as a counseling, psychology, or social work. One thing that needs to remain the same is the dyadic and psycho-educational nature of the program. Patients and family caregivers consistently say they like participating in the program with one another. They also like the program content which addresses both education and support.
Who do you think this program is most appropriate for? Other than men with prostate cancer and their spouses/partners, are there any attributes of the population or setting that should be considered?
We have delivered the program to people with various types of cancer. Our RCTs were mainly with large samples of patients with breast, prostate, colorectal, or lung cancer. But our implementation study with FOCUS included patients with other types of cancer as well such as ovarian, pancreatic, lymphoma, and these patients and their caregivers also found the program to be helpful. We have also had a variety of types of caregivers, most often spouses, but also adult daughters and sons, and other relatives or close friends. FOCUS was designed for patients and caregivers who were facing a difficult transition of some kind such as a new diagnosis of the disease, recurrence, progression, change of treatment etc. These transition points are often difficult for patients and family members and it is during these times that they are more likely to want to participate in the program and can benefit from it.

Featured Discussion

Learn more about Family-based Interventions (The FOCUS Program) for Men with Prostate Cancer and Their Caregivers!

This program is designed to improve the quality of life of men diagnosed with prostate cancer and their caregivers during all phases of the illness.

Read More

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