Q&A: Psychology, multicultural support and cancer disparities
Socioeconomically disadvantaged communities are disproportionately affected by cancer. Individuals from these communities have lower survival rates than their more socioeconomically affluent counterparts, according to the Centers for Disease Control and Prevention (CDC).
In the Boston area, the nonprofit Facing Cancer Together (FCT) is helping provide support to members of lower-socioeconomic-status communities. FCT serves people with all types of cancer at all stages of their disease, regardless of their capacity to pay. Recently, FCT received support from two volunteers to develop and launch of its multicultural cancer support group.
The volunteers were from APA’s Behavioral & Social Science Volunteers (BSSV) program, which is part of its Socioeconomic Status-Related Cancer Disparities Program (SESRCD). SESRCD is a national initiative to build the capacity of community cancer-serving organizations to address socioeconomic health disparities in cancer through the adaptation and use of evidence-based cancer prevention, early-detection and survivorship strategies. The program is funded by a five-year $1.75 million cooperative agreement with the Centers for Disease Control and Prevention.
One of its primary goals is to develop and maintain the network of Behavioral & Social Science Volunteers (BSSVs), whose primary goal is to provide community cancer-serving organizations and stakeholders with individualized capacity building assistance to access, adopt, adapt and use evidence- and practice-based strategies.
In this Q&A, Nancy Gaulin, PsyD of Facing Cancer Together describes the organization’s work and how BSSV has impacted its programming and service delivery.
Can you tell us about the history and mission of Facing Cancer Together?
The primary goal of Facing Cancer Together (FCT) is to serve and provide extraordinary care to people with all types of cancer at all stages of their disease. A mainstay of our mission is to provide support, wellness and educational services to all people affected by cancer, regardless of their capacity to pay. Through these professionally facilitated programs, participants become part of a community that promotes hope, empowerment and a connection to both the person with cancer and their loved ones.FCT utilizes unique programming, such as professionally facilitated peer-led cancer support groups for participants and caregivers, yoga classes, writing for wellness and diagnosis-specific networking groups. Facing Cancer Together seeks to create a community of hope, one that empowers people to achieve the best quality of life possible despite the often devastating effects of cancer. FCT’s unique clinical programming is facilitated by licensed clinicians with extensive training and experience in psychological and social (“psychosocial”) care.
Founded in February 2009, FCT later became a 501(c) 3 nonprofit organization, after the closing of The Wellness Community of Greater Boston. A dedicated group of clinicians, compelled by the understanding that psychosocial support is a critical aspect of care for people with cancer and their family members, decided to build an organization — Facing Cancer Together. Following its inception, FCT quickly began filling the void left by precipitous closing of The Wellness Community, Boston’s premier stand-alone provider of psychosocial support to cancer survivors and their families.
A cancer diagnosis is a traumatic event. After the initial shock, a person with cancer encounters a bewildering range of challenges, not only medical, but also emotional. Their family members experience profound difficulty as well, as they adjust to the impact of their loved one's illness. Sometimes, financial problems also result, such as the loss of employment income, which further exacerbates stress and insecurity.
In meeting the challenges of cancer, psychosocial support, such as that offered by Facing Cancer Together, is an essential complement to medical treatment. The Institute of Medicine notes that the failure to address the psychological and social needs of cancer survivors and their families "is a failure to effectively treat [the] patients' cancer, plain and simple." The Institute of Medicine explains that psychosocial care "addresses the emotional challenges that can accompany a serious illness as well as the life challenges that can prevent good health care and patients' ability to take care of themselves" (Cancer Care for the Whole Patient Report, 2007).
Although The Wellness Community closed suddenly in early 2009, the need for these services did not disappear. According to the U.S. Centers for Disease Control and Prevention, some 36,099 cases of cancer were newly diagnosed in Massachusetts during 2008 (the most recent year for which statistics are available). Due to advances in treatment, people are surviving longer after their cancer diagnoses.
What services do you provide to clients and the community?
Facing Cancer Together offers a diverse spectrum of services with the objectives of promoting quality of life, enhancing effectiveness of medical treatment, and enabling people with cancer to live more fully with the disease.
Cancer Support Programming
Ongoing weekly support groups are offered to survivors and caregivers regardless of the form of cancer or its stage. For example, our weekly LGBT support group provides a safe environment for lesbian, gay, bisexual and transgender people with cancer; this group is offered in association with Fenway Health. In addition, we launched a weekly multicultural cancer support group in fall 2011. This programming was developed with funding and BSSV support from SESRCD specifically to meet the needs of people of color living in Boston.
The support and assistance that our clients need are wide and far reaching. In fact, FCT also hosts a bimonthly bereavement group to assist those people who have recently lost a loved one to cancer.
What is the greatest lesson you’ve learned in providing care and support to women surviving cancer?
It has been an honor to support these individuals as they navigate the rough and calm waters of a cancer diagnosis, treatment and beyond. One of the recurring lessons that I have learned comes when I experience the changes that occur when persons are challenged and changed by a diagnosis of cancer. Some learn to live more thoughtfully, cherishing each day, each moment. Others change their views on what is now deemed important in life: Possessions and things become less important while family, friends and relationships become central, critical and life-sustaining. These lessons affect me in my role as a clinician and how I choose to live my own life, and for that I am grateful.
How did you hear about the SESRCD BSSV program?
In 2011 I attended the full-day free SESRCD workshop, "Reducing Cancer Disparities and Promoting Health Equity among Socioeconomically Disadvantaged Populations," led by Shalini Parekh and hosted by Beth Israel Deaconess Medical Center in Boston.
At this workshop I received vital tools and strategies required to act on, and advocate for, the initiation and/or improvement of cancer prevention and control efforts targeting socioeconomically disadvantaged populations. It was at this same meeting that I learned about the Behavior Social Scientist Volunteer (BSSV) concept. It was the first time that I had heard of this role, and knew immediately how important these consultations would be to the newly developing FCT multi-cultural cancer support group.
What role did SESRCD BSSVs play in your organization, and what was their impact?
FCT received support from two different BSSVs in the development and launch of the multicultural cancer support group. The first was in the form of two conversations with David Victorson, PhD, to help FCT to understand how to develop a community needs assessment. He graciously shared his expertise and listened to our ideas and where we made in-roads in the community. He blended the two and made very practical recommendations that FCT later incorporated in our marketing and outreach plan.
The second BSSV with whom FCT worked was Catherine Schuman, PhD. Through multiple phone contacts and emails, she helped FCT find relevant assessment tools to measure the success of our multicultural cancer support group. We exchanged ideas and then she completed a thorough literature review and made a recommendation of which assessment tools would best fit FCT’s needs. We fully implemented Dr. Schuman’s recommendation and incorporated these metrics at intake, mid-group and one month post-group experience. The results were tabulated and an individual, private discussion will be offered to each of the group’s participants to discuss the results and answer questions.
Our collaboration with the thoughtful and dedicated BSSV’s, ensured that the launch of the multicultural cancer support program was ensconced in integrity and rooted in assessment and measurement. I would highly recommend making use of their services. If FCT has an opportunity to involve them again, we will do so, without reservation.