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National Cancer Institute

Late Effects After Cancer

“Psychosocial Interventions for Cancer Survivors, Caregivers and Family Members—One Size Does Not Fit All: My Perspective as a Young Adult Survivor, Advocate and Oncology Social Worker” a personal reflection by Mary Grace Bontempo

Support Program Facilitator, Kimmel Cancer Center at Jefferson University

As a young adult survivor of head and neck cancer, an oncology social worker, and a cancer survivorship advocate, it was with great interest and enthusiasm that I participated in the first Survivor-Researcher Mentor Program of the Survivorship Conference: Pathways to Health After Treatment. Co-sponsored by the National Cancer Institute and the American Cancer Society, this meeting brought together leading minds in the field of survivorship science, survivors, caregivers, and advocates. Plenary sessions, breakout sessions, and poster presentations featured the emerging science and research in cancer survivorship. Topics included, but were not limited to, late effects of cancer and its treatment, interventions to address them, understudied populations, and national priorities in addressing cancer survivorship. The Lance Armstrong Foundation made it possible for 20 (including myself) survivors, caregivers, or advocates to attend this conference as part of the Survivor-Researcher Mentor Program, enabling us to interact with and learn from leaders in the survivorship field. In turn, the mentors had the opportunity to learn about the participants’ experiences as survivors, advocates, caregivers, and health professionals. It was a unique and enlightening experience.

As an 8-year survivor of head and neck cancer, oncology social worker, and cancer advocate, I have experienced firsthand or through my work with patients many of the challenges and psychosocial issues that survivors confront. Grief, anxiety, depression, altered body image, fears of recurrence or second malignancies, and losses in terms of previous life roles and aspirations are just some of these, and can create significant distress. Psychological distress was highlighted in the conference breakout session that I attended, as well as several of the poster presentations and the President’s Cancer Panel 2003 Annual Report. A common theme underlying all of these is that it is important not just that survivors live, but how they live. Quality of life in survivorship is of great significance. As many presenters illustrated, supportive interventions and support groups are effective and often essential tools for easing psychological distress. In her study of psychological interventions for breast cancer patients in the re-entry phase, Annette L. Stanton, Ph.D., from UCLA, stressed that “one size does not fit all” and that the effects of interventions vary as a function of the characteristics of the participant. Further research should be undertaken to focus interventions on those most in need and to tailor the content to the specific characteristics of the individuals to whom they are geared.

Several poster presentations echoed this theme of tailoring specific interventions to the characteristics of those they intend to serve. One by Anne E. Kazak, Ph.D., of the Children’s Hospital of Philadelphia, on the treatment of post-traumatic stress symptoms in adolescent survivors of childhood cancer highlighted the need for innovative models of intervention that both reduce symptoms and promote resiliency and competency. Another by Lora Rhodes of the Kimmel Cancer Center illustrated the promise of one-on-one peer support as an alternative to traditional support groups for those who otherwise could not or would not participate in such groups. In addition to improving social and emotional quality of life in participants, this intervention also proved to be as acceptable or even more acceptable to men, a trend not usually seen in traditional support groups.

Another poster presented the efficacy of a telephone-based expressive writing program for spouse/partner caregivers of hematopoietic stem cell transplant survivors. This group often reports significant social constraint, as well as a reluctance to share their own feelings at a time when most medical and psychosocial attention is focused on the survivor. The expressive writing intervention was designed with these caregiver characteristics in consideration, and thus provided a feasible and comfortable outlet for thoughts and feelings without social constraints, as well as a few moments devoted to their own needs—time which they had previously been reluctant to create for themselves. This poster, as well as the others mentioned and several others not discussed, all reflect the importance of targeting the intervention to the specific characteristics and needs of those it is meant to serve. As we develop and implement supportive interventions and programs, it is essential to bear in mind that “one size does not fit all.”

This notion of designing supports tailored to the specific needs, concerns, and characteristics of the recipients also relates, in my opinion, to the idea of understudied populations—specifically, the population of young adult survivors. While I truly believe that cancer survivors from across the life span equally deserve research, attention, and supportive interventions, it does not seem that the young adult survivor population has received as much focus as it might. While it was encouraging to see that several of the sessions and posters at this conference addressed the “orphaned cohort,” these presentations largely focused on young adult survivors of childhood cancers. Research and information on those actually diagnosed as young adults, roughly between the ages of 18-35, was less prevalent. At a time when most are attending college or graduate school; establishing new careers, relationships and independence; buying homes; starting families, etc.; a cancer diagnosis proves to be an abrupt interruption that thrusts the young adult into a tumultuous and unfamiliar world that brings numerous concerns. Some of these include acute and long-term effects; fear of recurrence or death; depression; altered self-esteem; fertility; dating and relationships; and difficulty obtaining health and life insurance, employment, and adequate follow-up surveillance. While some of these concerns overlap with those of others across the life span, many of the challenges are specific to this age group and assistance is often needed in navigating the foreign territory of cancer diagnosis and survivorship.

Over the past 10 years, awareness of the unique concerns facing young adult survivors has gradually been brought to the forefront thanks to the dedication and success of organizations such as The Lance Armstrong Foundation, the Ulman Fund for Young Adults, Planet Cancer, Vital Options International, the Young Survival Coalition and Fertile Hope. Still, though, more can be done to heighten awareness and develop supportive interventions and programs, particularly at the institutional and community levels. Sometimes it takes connection to a program or person in the center or community in which a young adult is being treated for him or her to learn about helpful organizations such as these. Programs and services directly geared toward the specific needs of young adult survivors should be available at health care institutions and community levels, serving as first-line supports and liaisons to the other essential organizations that I have mentioned above. As a young adult survivor, advocate, and oncology social worker, I plan to continue to develop, support, and encourage such programs and supportive interventions within my own institution and community to continue to address and heighten awareness of the unique needs and challenges confronted by those diagnosed with cancer as young adults.

The views and opinions expressed do not necessarily state or reflect those of the United States Government and they may not be used for advertising or product endorsement purposes.