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Finding Support Systems for People with Cancer

Finding Support Systems for People with Cancer

Each cancer diagnosis begins a unique experience, and the path through treatment is a unique journey; sometimes a lonely one. If you or someone you love is coping with cancer, many experts suggest that you may find comfort and strength through support groups, where you can discuss and share your feelings and experiences with others who are facing or have faced common challenges. The goal of cancer support groups is generally to help people cope with the challenges they face by connecting with others and learning how they worked through steps in their treatment process. Group members share what worked for them, often including how they marked milestones along their journey such as starting and completing treatments, and other issues related to their illness or recovery.

"Support groups can be effective in many ways," says Claire J. Casselman, Social Work Coordinator and Complementary Therapies Clinician, University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan. "Meeting and talking with other people whose lives are affected by cancer can create a sense of community or commonness that helps relieve the stress of isolation that many people experience."

Casselman says when participants tell their stories and listen to the stories of others, they may recognize that many of their reactions or questions are "normal." They might also hear a new perspective that helps to broaden their own thoughts. Participants also exchange practical tips for managing day-to-day challenges.

Joining In

You may be apprehensive about joining a support group at first—many people are. "Some people have a fear about opening up and telling others their story or hearing others' experiences," said Joan Hermann, Director of Social Work Services at Fox Chase Cancer Center in Philadelphia, Pennsylvania. "They may think a support group may make them even more depressed."

However, Hermann said that in her experience, support groups offer inspiration to patients and a way that makes them feel less isolated. They quickly learn that others are experiencing similar thoughts and fears, and have similar questions, and that sharing and discussing these issues is worthwhile, Hermann said.

Similarly, Casselman says, the act of offering support can be just as important. Connecting with others in a group can help participants reconnect with their own competencies: empathy, compassion, wisdom, problem-solving skills. She said that by offering these strengths to others, participants can often regain a foothold on the self-efficacy and resourcefulness that patients can easily lose sight of when they become a "cancer patient."

Common Threads

Support groups often explore common threads of cancer experiences.

  1. Coping Strategies. Participants are often given strategies to help cope during cancer treatment. "By sharing, it makes individuals understand that others like them are trying to work through the same experiences," said Greta Greer, Director of Survivor Programs with the American Cancer Society's home office in Atlanta, Georgia. "Through sharing feelings, they can understand that what they are feeling is very common among participants in the group."
  2. Personal Struggles. Participants also discuss strategies for managing personal relationships, with a spouse, caregiver, siblings, friends, and even children. "Through sharing, it is a great way to hear how others relate to those close in their lives," Greer added. "Often, loved ones and friends are afraid or unsure how to act, and may not want to say or do the wrong thing." Greer said that those with a personal investment often have a difficult time opening up and sharing how they feel or how they want to help. Support groups may offer ways to facilitate better communication among patients and their close circle.
  3. At Their Own Pace. Even after deciding to join a support group, you may be hesitant to take an active role. Although each group is different, the experts all noted that participants are not pressured to share before they are comfortable doing so. Sloan B. Karver, MD, Program Leader of the Psychosocial and Palliative Care Program and Assistant Professor in the Department of Oncologic Sciences at Moffitt Cancer Center in Tampa, Florida, said it's certainly acceptable to just listen to what others say to pick up tips. "Participants can listen and observe others and participate at their own comfort level," Dr. Karver said. "If they don't want to participate, they would just say, 'I'm not comfortable sharing at this point.'"

Different Support Groups

The different types of cancer support groups should make it possible for you to find the group that works for you, including:

  1. Patient-only. For some people, attending groups without partners can be liberating and allow them to share, and have validated, their feelings and frustrations.
  2. Patient and Spouse/Caregiver. Alternatively, for some, attending meetings with a partner can strengthen that bond and demonstrate how a commitment to working together can be an added comfort. Meeting with other couples can also be an opportunity to discuss topics common to many partners living with cancer, including frustration and fear of loss.
  3. Spouse or Caregiver. Similarly, a forum where caregivers can discuss their challenges can also be very helpful and effective. Caring about and/or for a cancer patient can be an exhausting and emotionally taxing experience on several levels. Coping and support strategies are often exchanged.
  4. Children. Greer of the American Cancer Society, said children often will appreciate a place where they can open up and share their concerns and fears.

Finding the Right Group

With this variety of support groups available, finding the right one for you might seem to be one more challenge, but it shouldn't be. Often the cancer center, hospital, clinic, or doctor's office where you are receiving treatment will have a listing of available resources, according to Louise Knight, director of the Harry J. Duffey Family Patient and Family Services Program at The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore, Maryland. Many national organizations, including the American Cancer Society, CancerCare, and the Leukemia/Lymphoma Society, will research support groups for callers. See the NCCN Cancer Resources page for contact information for these and other agencies. Local newspapers, libraries, and houses of worship also often offer listings of groups in the area.

As with most things, word of mouth is very useful, said Knight. "Asking the professional caring for you will [often] lead you to the right resource."

Getting tips from these professionals can also help to ensure that any support group you join is reputable and reliable group. In addition, Casselman suggests several basic guidelines. You should look for a group that:

  1. Is facilitated or led by a trained leader with special knowledge of oncology/hematology. Groups are often jointly led by a mental health professional (e.g., social worker) and a medical professional (e.g., nurse, nurse practitioner).
  2. Is sponsored by a cancer center, hospital, or other well-informed, reputable organization (such as, the American Cancer Society, Cancer Support Community, and CancerCare).
  3. Has clearly stated and adhered to policies regarding confidentiality and privacy.
  4. Charges no fees or makes fundraising expectations.

Online Support

Casselman says that oncology professionals are exploring the advantages, limitations, and potential dangers of online forums and support groups. "Current data suggest that attendance at in-person support groups is declining nationally, though the reasons for this aren't entirely clear," she said. "There's a small but growing body of solid research about the benefits of online support resources."

Effective online support groups that are offered by knowledgeable, skilled staff from reputable organizations are available, and these forums can be especially helpful for people in rural areas, those who are too ill to attend a meeting in person, or those who without access to transportation. Online support groups also have the advantage of providing anonymity and 24-hour availability, as well as bringing together individuals from different geographic areas. Furthermore, because they are Internet-based, members can easily share resources such as Web sites, information, and news through emails and posts, providing a venue for knowledge exchange and review .

Keep in mind, though, that not all online support groups are the same. Some key points to consider when looking for virtual support groups:

  1. Due Diligence. Researching online support groups is very important. Explore whether the site have any sort of registration or screening process for participation. Many support groups offer free access, but some charge a small registration fee. Also recognize that password protected online interactions may offer an extra safeguards for confidentially.
  2. Virtual Success. Online offerings by established groups such as the American Cancer Society's Cancer Survivors Network, Cancer Support Community, or CancerCare, or a medical center or cancer care institution, are good starting points. Ask friends or people who have participated in a support group if they have experienced success through this type of outreach.
  3. Credentialed Facilitators. If a group is professionally monitored, online etiquette is better ensured. Postings, questions, and answers are monitored, and an educational component is likely to be added or included. Online support groups are often facilitated by professionals such as social workers, psychologists, or medical doctors.
  4. Individualized Experience. Although general cancer support groups are available, an online group may allow you to choose a forum that deals with your specific cancer, one tailored to your treatment concerns, such as chemotherapy, or one that focuses on your age group, such as for teens or children (these can also be a good resource for parents of children with cancer).

All in all, finding and joining the right support group can be a great asset to people with cancer, and their families, friends, and caregivers.