Dr. Laurel Northouse is Professor Emerita at the School of Nursing, University of Michigan. She 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 & Answers
Our program can be adapted for different types of cancer patients and their caregivers. Since completing the FOCUS Program with prostate cancer patients and their spouse partners, we have implemented the program with patients facing advanced lung, colo-rectal, and breast cancer. We have also implemented the program with a very heterogeneous group of cancer patients in Cancer Support Community sites. In general, the program is likely to be effective with patients various types of cancer and with patients who are either recently diagnosed, have recurrent cancer, or advanced cancer. The FOCUS Program has also been successfully implemented with various types of family caregivers including spousal and non spousal caregivers such as siblings, adult children (age 18 or older), or a parent of the cancer patient. The program is more likely to have significant intervention effects if patients are experiencing a change in health status such as a new diagnosis, recent recurrence, or progression of disease rather than with patients who are long term survivors with few needs for information or support. There are a few things that can be modified in the program. The educational brochures that we used in the prostate program can be changed to other brochures with similar content pertaining to family communication, optimism, coping and symptom management. In addition, we have also adapted the delivery of FOCUS. While it was originally designed as a home based program delivered to an individual dyad by a nurse, it has been successfully implemented in a small group format (3-4 dyads per group) by a masters-prepared social worker in the Cancer Support Community. There is a modified FOCUS Intervention Manual for the small group format would need to be requested from lnortho@umich.edu
The program is facilitated when the implementer is an experienced clinician who is comfortable working with cancer patients and their family caregivers. The implementer also needs a flexible schedule, if offering the home-based program to individual dyads. Intervention sessions often need to be done in the evening or weekend because of dyad's work schedules. Both patient and family caregiver need to attend sessions together to get maximum benefit from the program. Our program is a dyadic program, meaning it is delivered to both patient and caregiver together as the unit of care. If for some reason, one member of the dyad could not attend, we rescheduled the intervention session. Another facilitator is to use the Checklist in the Intervention Manual to be sure that the key interventions are being delivered as expected and to enhance intervention fidelity. If only some of the prescribed interventions are delivered, the program will not significantly improve participants' outcomes.
At a minimum, practitioners should evaluate patient's and caregivers' satisfaction with the program after they complete it. We have a FOCUS Satisfaction Questionnaire in the materials that are available to download from the RTIPs website. Other important instruments to consider are a self-efficacy measure, emotional distress measure and/or quality of life measure. We have consistently found positive change on these instruments when given to patients and caregivers prior to the intervention and again after participants complete the intervention to see if the score improve.
Currently, we are working on ways to disseminate the FOCUS Program using either the nurse-delivered home-based program or small group program. We are also working with researchers in Europe who are implementing the program after making some cultural adaptations to the program. Prior to implementing the FOCUS Program widely, these researchers conducted a series of small pilot studies to be sure that the program was culturally relevant for participants. It is essential to conduct pilot studies prior to implementing FOCUS in different cultural settings to be sure that the program's aims and content are relevant. It would also be useful to contact the FOCUS Program developers (lnortho@umich.edu) prior to conducting a new study of FOCUS for any updates to the intervention manual or program resources. We have also done some preliminary work adapting FOCUS to a web-based program.