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 ways of coping are ineffective and find it difficult to talk to family and friends. 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 afford the opportunity to express concerns to others who share 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 that they would not have thought of on their own.
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 over one hundred cancer-related patient support and advocacy groups, and many have been instrumental in providing assistance to people affected by cancer.
Goals of groups: 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 course of the patient’s cancer
Attainment of group goals is often enhanced by the disease-specific or role-specific membership of cancer support groups and the nonmedical environment in which they meet.
Types of groups and therapeutic approaches: Cancer support groups employ a variety of psychotherapeutic approaches. They vary widely in structure, focus, and activities. Some are time limited with specific content and goals, or teach a specific skill targeted to improving quality of life. In general the these types are called psycho-educational groups.
Other cancer groups may be ongoing, patient-centered, and focused on 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 a professional with special training in both mental health and group intervention modalities relevant to patients with cancer.
Some cancer support groups include a combination of education, group interaction, support, and behavioral training. Behavioral training teaches new skills such as progressive muscle relaxation, meditation, or biofeedback, which can be effective in reducing stress and minimizing treatment side effects. The fact that behavioral skills are learned and self-administered is of benefit in improving 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 in an effort to identify and eradicate maladaptive communication styles and relationship patterns, and may focus on past rather that 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 about 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. Obviously, the rationale for this approach is based on the goal of 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, new genetic technologies have given rise to groups for those at risk but not yet diagnosed with cancer. These groups offer multiple perspectives and education about issues such as genetic testing, 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 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 that are relevant to all participants; thus members are protected from painful experiences that do not pertain to them and could overwhelm and undermine rather that enhance 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 take care of the affected person. Family members may need help in 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, although far more caregiver resources are needed. This rapidly growing need is based on changes in health care 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 maintenance of 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 the needs of professional caregivers, 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 the service of maintaining professional morale and promoting and maintaining high-quality oncology care.
Research regarding efficacy: One of the most important predictors regarding the efficacy of any behavioral or group technique is whether the person receiving the treatment believes it will be helpful. That is a major limitation to studies examining 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 largely self-selected, meaning that they participate in the support group because they start out with the belief that it will benefit them. The consensus among researchers is that cancer support groups enhance 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 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 the statistic 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 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 malignant
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: Recent years have seen an explosion of Internet sites designed to provide information, support, and education for individuals affected by cancer. They usually involve interaction in real time among individuals who communicate via computer in chat rooms. Other sites are informational in nature. Questions can be posed and answers received at a future time, or individuals may be directed to a number of question-specific predetermined resources.
Internet-based groups vary widely in content, process, and quality. Some are led by moderators; others are not moderated or monitored at all. At present, there is scant empirical evidence supporting the efficacy of Internet-based cancer support. Even more problematic is that there are no quality control measures to ensure 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 limitation of the 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 has 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 other website. The virtual explosion of technology, websites, unclear laws, and the ability of Internet sites to disappear and emerge overnight under new names makes their regulation difficult. Further, the technological expertise of unscrupulous website administrators often surpasses that of law enforcement, although that gap is closing. Therefore, the safety, accuracy, and ethics of Internet support groups and the validity of their informational content will remain a formidable challenge.
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