Support groups for cancer

DEFINITION: Cancer support groups are designed to provide comfort, information, and education within a confidential group setting. They are intended to provide a safe place for individuals with common cancer-related concerns to experience mutually provided emotional support.

The need for support: At critical points in the course of cancer, such as designation of high-risk status, diagnosis, initiation or cessation of treatment, and recurrence, patients face challenges that can be overwhelming. They may find that their usual coping methods are ineffective and that talking to family and friends is difficult. Commonly, patients want to protect their family and friends from their pain or are reluctant to admit how scared they feel.

Support groups can help patients feel less isolated, improve their coping skills, and allow expressing concerns to others with similar problems. The group format provides multiple perspectives on many issues; thus, participants can acquire new information, learn new skills, and observe firsthand better ways to manage problems they would not have thought of independently.

Cancer support groups can also assist with managing practical aspects of cancer, such as providing patients with knowledge of innovative ways to manage treatment effects or tips about returning to work after treatment. In the United States, the National Cancer Institute lists hundreds of cancer-related patient support and advocacy groups, and many have been instrumental in assisting people affected by cancer.

Goals of groups: The general goals of cancer support groups include the following:

• Provision of support among homogeneous groups affected by cancer
• Improvement of morale and self-esteem
• Enhancement of coping skills, personal control, and problem-solving abilities
• Reduction of emotional distress
• Provision of education regarding cancer and treatment-specific issues
• Clarification of medical information that may be missed in other settings because of anxiety
• Clarification of misconceptions and misinformation regarding cancer and its treatment
• Normalizing emotional reactions that occur throughout the patient’s cancer

The disease-specific or role-specific membership of cancer support groups and the nonmedical environment in which they meet often enhance the attainment of group goals.

Types of groups and therapeutic approaches: Cancer support groups employ various psychotherapeutic techniques. They vary widely in structure, focus, and activities. Some are time-limited with specific content and goals or teach a particular skill targeted to improving quality of life. In general, these types are called psycho-educational groups.

Other cancer groups may be ongoing, patient-centered, and focused on the general expression of fears and concerns that may be too painful for patients to reveal to family and friends. These groups are called psychotherapy groups. Psychotherapy groups should be run by professionals with special training in both mental health and group intervention modalities relevant to patients with cancer.

Some cancer support groups combine education, group interaction, support, and behavioral training. Behavioral training teaches new skills, such as progressive muscle relaxation, meditation, or biofeedback, which can effectively reduce stress and minimize treatment side effects. Learning and self-administering behavioral skills can improve symptom management, self-efficacy, and quality of life.

Cancer-specific versus general support groups: General psychotherapy groups tend to explore a range of life experiences, often promote confrontation among members to identify and eradicate maladaptive communication styles and relationship patterns, and may focus on past rather than current experiences to examine the origin of destructive relationship patterns. However, groups specifically for people with cancer typically maintain a focus on the cancer diagnosis, including its meaning and implications, and offer education and support specific to cancer-related topics. They are usually time-limited and use a brief therapy, supportive, or crisis-intervention model. Normalizing emotional distress, providing realistic reassurance, bolstering strengths and positive coping skills, and gently suggesting behavioral alternatives to replace destructive methods of coping are essential components of the cancer support group’s process and goals. Cancer support groups offer participants a range of perspectives on cancer-specific topics within the context of guidance, protection, and boundaries provided by a knowledgeable leader. Confrontational communication, exploration of past trauma, and problems not directly relevant to current issues are usually not addressed. This approach's rationale is based on enhancing coping skills and keeping stress within manageable limits.

Group composition: Cancer support groups exist for a range of individuals affected by cancer. Usually, membership is limited to individuals with similar characteristics and problems. For example, the advent of genetic technologies has given rise to groups for those at risk but not yet diagnosed with cancer. These groups offer multiple perspectives and education about genetic testing, the risks and benefits of testing, and various prevention and screening practices. Membership may be centered on characteristics including cancer site, point in the course of cancer, and relationship to the patient (for example, parents with an affected child, children with an affected parent). The benefit of a homogeneous group is the focus on similar content and themes relevant to all participants; thus, members are protected from painful experiences that do not pertain to them and could overwhelm and undermine instead of enhancing their coping skills.

Groups for cancer caregivers: Family and friends may benefit from participating in a cancer support group, especially if they love, depend on, or care for the affected person. Family members may need help dealing with stresses, such as family disruptions, financial worries, and changing roles.

To help meet these needs, some support groups are designed just for family members of cancer patients. There has been an increase in the number of groups designed for family cancer caregivers that combine education, support, and links to community services. However, far more caregiver resources are needed. This rapidly growing need is based on changes in healthcare financing and delivery and resultant trends that have displaced a large burden of cancer care onto family members. Patients are discharged from hospitals while still needing some care; they often require highly technical, complex care that at one time was performed by professionals in a clinical setting.

For example, it has become common practice for a breast cancer patient to be discharged from the hospital on the day of a mastectomy. Drains are still in place, pain management and risk for infection are primary concerns, and the need for monitoring, direct care, functional assistance, and support is constant. Coupled with dramatic reductions in third-party reimbursement for home health services, the burden of this complex care falls to family and friends who typically are not equipped, from an educational or emotional standpoint, to manage it. Stress may be compounded among caregivers who work and depend on maintaining their income, have others who depend on them, such as children or other ill or elderly family members, have limited finances or people available to provide assistance and respite, are ill themselves, or are experiencing countless other issues.

Caregiver burden and the need for additional services promise to be critical well into the future. The practical and emotional needs of family caregivers and the far-reaching impact of these issues on the social and economic welfare of the United States and its citizens are immense. There are support groups specific to professional caregivers' needs, although more resources are needed in this area. Professional caregiver support groups are valuable for countless reasons, not the least of which are validation of the stressful nature of the work and stress management in maintaining professional morale and promoting and maintaining high-quality oncology care.

Research regarding efficacy: One of the most critical predictors regarding the effectiveness of any behavioral or group technique is whether the person receiving the treatment believes it will be helpful. That is a significant limitation to studies examining the efficacy of cancer support group treatments. Although several studies have demonstrated positive outcomes, from increased survival time to improved quality of life among support group members, subjects are primarily self-selected, meaning they participate in the support group because they start believing it will benefit them. The consensus among researchers is that cancer support groups enhance the quality of life by providing information, reducing isolation and helplessness, and normalizing emotions. Studies have shown that participation in cancer support groups promotes positive coping; reduces symptoms, such as tension, anxiety, fatigue, and confusion; and improves compliance with cancer treatment.

One of the most widely publicized studies regarding the efficacy of cancer support group treatment was a 1989 clinical trial of women with metastatic breast cancer conducted by physician David Spiegel. Study findings suggested that women who participated in a cancer support group lived eighteen months longer than a control group of women who did not participate. The study was later criticized because average rather than median survival was used to compare group survival differences. Averages can be dramatically skewed in one direction or another by just one early death or long-term survivor in a particular group. Therefore, it was concluded that the study findings were misleading. A subsequent clinical trial that followed a sample of women with breast cancer found no survival differences between support group participants and nonparticipants, and yet another study reported that patients with melanoma who had taken part in a psycho-educational cancer group lived longer than those who did not take part.

A 2005 review of four studies of women with breast cancer found no relationship between support group participation and survival other than that reported in Spiegel’s study. Limitations of studies that have examined the link between support group participation and survival include the self-selective nature of research samples and the group’s impact on treatment compliance, which directly impacted survival. One study at the Ontario Cancer Institute found that women with breast cancer who lacked support from their families and friends were helped the most by support groups; therefore, there may be factors that predispose some patients to benefit from participation in support groups. Finally, some data link cancer support group participation with negative consequences.

At this point, there is insufficient evidence to support the efficacy of cancer support group interventions. Nonetheless, there is abundant anecdotal evidence to support the benefits of attending if participants believe the experience will help and are not unduly stressed by exposure to the feelings and problems of others, and their needs are met by the group’s content, goals, and activities.

Internet-based groups: As the twenty-first century progressed, an explosion of Internet sites designed to provide information, support, and education for individuals affected by cancer occurred. These sites usually involve real-time interaction among individuals who communicate via computer over instant and direct messaging, email, and chat rooms. Other sites are informational. Questions can be posed, answers received at a future time, or individuals may be directed to several question-specific predetermined resources. Social media has added to the Internet content related to cancer support.

Internet and social media-based groups vary widely in content, process, and quality. Moderators lead some; others are not moderated or monitored at all. Researchers are still determining the efficacy of Internet-based cancer support, and cancer support over the Internet and social media is fraught with the traditional perils of this medium, including no quality control measures to ensure the accuracy of information, nor are there procedures to screen or assist those who may be upset or otherwise harmed by content.

Tension between patient advocacy groups, clinicians, and groups devoted to freedom of information has prevented the limited content of Internet sites or access to sites by specific vulnerable populations. Although many cancer-related sites provided by respected institutions and organizations, such as the American Cancer Society and the National Cancer Institute, are of excellent quality and aim to assist patients in every way, the Internet and social media sites have provided a breeding ground for unscrupulous practices. Vulnerable patients, especially those with progressive illness or those not faring well with conventional treatment, can fall prey to false hope and financial as well as psychological exploitation, whether visiting an unmonitored support group or another website. The virtual explosion of technology, websites, unclear laws, and the ability of the Internet and social media sites to disappear and emerge overnight under new names makes their regulation difficult. Further, the technological expertise of unscrupulous website administrators often surpasses law enforcement, although that gap is closing. Therefore, Internet support groups' safety, accuracy, and ethics and the validity of their informational content will remain a formidable challenge. 

Bibliography

Amer. Cancer Soc. Cancer Support Groups: A Guide for Facilitators. Atlanta: ACS, 2013.

Breitbart, W. “Spirituality and Meaning in Supportive Care: Spirituality- and Meaning-Centered Group Psychotherapy Interventions in Advanced Cancer.” Journal of Supportive Care in Cancer, vol. 10.4, 2002, pp. 272–280.

“Coping – Cancer Support Groups.” National Cancer Institute, 22 Sept. 2023, www.cancer.gov/about-cancer/coping/adjusting-to-cancer/support-groups. Accessed 4 July 2024.

Cunningham, A. J., et al. “A Randomized Controlled Trial of the Effects of Group Psychological Therapy on Survival in Women with Metastatic Breast Cancer.” Psycho-Oncology, vol. 7, 1998, pp. 508–517.

Edmonds, C. V., G. A. Lockwood, and A. J. Cunningham. “Psychological Response to Long-Term Group Therapy: A Randomized Trial with Metastatic Breast Cancer Patients.” Psycho-Oncology, vol. 8, 1999, pp. 74–91.

Fawzy, F. I., N. W. Fawzy, L. A. Arndt, and R. O. Pasnau. “Critical Review of Psychosocial Interventions in Cancer Care.” Archives of General Psychiatry, vol. 52, 1995, pp. 100–113.

Goodwin, Pamela J. “Support Groups in Advanced Breast Cancer.” Cancer, vol. 104, suppl. 11, 2005, pp. 2596–2601.

Goodwin, Pamela J. “Support Groups in Breast Cancer: When a Negative Result Is Positive.” Jour. of Clinical Oncology, vol. 22.21, 2004, pp. 4244–4246.

“Support and Online Communities.” American Cancer Society, www.cancer.org/support-programs-and-services/online-communities.html. Accessed 4 July 2024.

Zabalegui, A., S. Sanchez, P. D. Sanchez, and C. Juando. “Nursing and Cancer Support Groups.” Jour. of Advanced Nursing, vol. 51.4, 2005, pp. 369–381.