April 6, 2010 Features

Blueprint for Creating a Successful Head and Neck Cancer Support Group

Online Exclusive

Background

Support group members speaking at local high school
Support group members speaking at local high school: From left to right—Reverend Alvin Bell, Elaine Bell, Sara Chaney, Linda Dollenmeyer, Richard Dollenmeyer

Head and neck cancer (H&N CA) is a deadly condition that has a number of devastating consequences. As a result of H&N CA and its treatment, patients not only have to cope with a life-threatening diagnosis, but also an altered facial appearance and the loss or impairment of important functions such as the ability to taste, smell, swallow, speak, and /or produce saliva. What's more, the individual may require alternate means of nutrition/hydration (via the placement of feeding tube), the use of electronic devices (electrolarynx, augmentative/alternative communication devices) in order to communicate, and/or complete or partial removal of large parts of his/her anatomy (laryngectomy, thyroidectomy, etc.) in order to remove the cancer.  The laryngectomized patient will never regain their natural voice, and still other H&N CA patients may never again be able to fully function as they could prior to cancer diagnosis. These effects make them prone to psychosocial problems and in need of educational and supportive care (De Leeuw et al., 2000).

Head and neck cancers include those of the buccal cavity, larynx, pharynx, thyroid, salivary glands, head and neck subset, and nose/nasal passages—and account for 6% of all malignancies in the United States (National Cancer Institute, 2009).  H&N CA is the 10th most common cancer in the world, and its incidence is increasing (Semple et al., 2007). Despite this increase in incidence, however, mortality rates have remained very low. The doubling in the incidence of thyroid cancer since the early 1970s may be attributable to more sensitive imaging technologies and better biopsy techniques, rather than an increase in the actual number of cases (National Cancer Institute, 2009).  Still, approximately 55,000 people in the United States will have developed H&N CA in 2008, and nearly 13,000 people will die from it (The Yul Brynner Head and Neck Cancer Foundation, 2008). A speech-language pathologist is an integral part in the journey of an individual diagnosed with H&N CA, and this role is not only medically supportive, but also can be an emotionally supportive  through the development of a H&N CA support group. 

Research has shown that cancer patients in general benefit from support group participation (Grand et al., 2006).  Standard cancer treatment protocols, however, may not address patients' psychosocial needs. These unmet needs often can be alleviated by mutual aid (direct assistance, advice-giving, and emotional support) offered by people who share a common experience, enhancing the services of professionals by adding a dimension of support best provided by other members of the group in need (Cella & Yellen, 1993).

Cancer support groups provide a unique sense of community, unconditional acceptance, and information about cancer and its treatment—in contrast to the isolation, rejection, and lack of knowledge about cancer frequently experienced outside the group (Ussher et al., 2006). After participating in the group, support group attendees are somewhat less likely to be depressed than non-attendees (Taylor et al., 1986). Members want to compare emotional and physical progress with others, learn more about their illness, and share concerns with patients and medical professionals (Bauman et al., 1993).

Participants in a study by Hegelson & Cohen (1996) involving a support group that included education (for informational support) and discussion (for emotional support) reported increased  self-esteem and psychosocial adjustment over the study's duration. Ten years later the researchers found that the intervention increased survival by 18 months. When the effects of a group providing education with group discussion were compared to the effects of a group using discussion alone, both groups showed improvements over time, but the group with education and discussion showed greater improvements (Hegelson & Cohen, 1996).

These studies have led the authors to generate a H&N CA support group at the Cincinnati Veteran's Affairs Medical Center (CVAMC) and structure the meetings to incorporate education and group discussion components. Outside of introductory training and information kits, no advanced instruction or support interventions are available on how to start a support group. Because the most valuable support (as determined by previous literature) is tailored to the needs of the individual patient (De Leeuw et al., 2000), it is best to address the patients' perceptions of support groups first, and then follow with investigation into their specific supportive care needs and desires.  Butow et al (2007) concluded that "individual variation suggests that a needs analysis should be made by individual groups." These findings led to the present study and the use of a needs assessment to enhance the CVAMC H&N CA support group. A few examples of common needs among the individuals in the current group were: hope for the future, supplies, faith, and emotional support (see sidebar).  

Support Group Development

The purpose of this project was to develop a support group, describe its evolution over the course of six months, and ultimately serve as a blueprint to help others create and lead a successful H&N CA support group of their own.  

The administrators, all speech-language pathologists, first prepared a detailed outline that described in detail the process of group development from the moment the idea was conceived through the present. This outline is a step-by-step guide for others wishing to create similar support groups. 

Research

The administrators conducted extensive research on cancer, support groups, H&N CA, patient perceptions of support groups, and H&N CA groups across the country. These included well publicized groups such as the Dallas Veterans Affairs Medical Center, James Cancer Hospital and Solove Research Institute at Ohio State University Medical Center, Beaumont Hospitals in Northern Ohio, University of Southern California H&N CA Support Group, Atlanta Veterans Affairs Medical Center, and the International Association of Laryngectomees.  

Invitation to participate

After researching other successful support groups, the administrators sent an introductory e-mail invitation to CVAMC medical professionals whose participation might benefit the group's success, including additional speech-language pathologists, a nurse manager, social worker, dietician, otolaryngologist and residents, occupational therapist, dentist, psychologist, radiation oncologist, physical therapist, audiologist, and representatives from the smoking cessation and pain clinics. Interested personnel (including the speech-language pathologists, nurse manager, social workers, dietician, radiation oncologists, and a representative from the smoking cessation clinic) met for a planning meeting led by the administrators, which generated extensive collaboration that further aided the group's development. Interdisciplinary involvement is vital to the successful establishment and evolution of a support group.  The need to include a social worker/licensed counselor is evident as emotional issues will arise during group sharing, and involvement of this professional will help guide group discussion and address some of these issues. 

Getting the word out

The administrators developed materials to assist with group development and advertising. Materials included projected meeting timelines/agendas, flyers, brochures, welcome letter, sign-in sheet, list of potential group discussion topics, sign-up sheet for group participation opportunities, and a meeting newsletter. The newsletter included group information/meeting dates, a member spotlight, support resources, recipes and nutrition information, events, quote of the month, thank-you notes, and group contact information.  The administrators posted flyers around the medical center and also provided other medical professionals with brochures to display in therapy rooms. An additional flyer with detailed support group and meeting information also was distributed to assist patients with future planning.  Additionally, the administrators generated and relied on word-of-mouth to create interest and awareness of the support group. They made telephone calls to 121 patients with H&N CA who had undergone surgery within the past three years to inform them of the group's development.  

Assessing Patient Needs

The first meeting was attended by 10 patients/members, the ENT nurse manager, ENT surgeon, speech-language pathologists, dietician, social worker, and a representative from the Stop Smoking Clinic. To better cater the group goals and content to the needs and desires of the patients involved, and to determine the direction of the group according to the interests of the participants, administrators distributed a needs-based assessment at the first meeting. The meeting agenda included an explanation of the purpose of the support group, an introduction of medical professionals and group members present, group discussion, personal experiences, a sharing of tips/ideas amongst the members, distribution of the newsletter and needs-based assessment, sign-up for the group's participation opportunities, a request for members to spread awareness of the group, and socialization time with refreshments.   

Respondents of the needs assessment ranged from those newly diagnosed and currently making the decision about surgery and/or radiation, to one member who was 20 years post-laryngectomy.  However, most of the group members were less than six years post-diagnosis.  Participants were not required to answer every question on the survey and could write in as much or as little as desired (see Results of Needs-Based Assessment).  Patients most commonly looked to the group to gain support, comfort, hope, information, camaraderie, inspiration, communication between the doctor and patients, help from others further along about coping with the daily problems of the cancer, the opportunity to share experiences, to be able to learn tricks from others, and to acquire a realistic view of their situation.  

Respondents expressed the need for the most support with adapting to the situation and/or life-changing circumstances, sharing experiences, learning more to help themselves, learning new technology and methods, gaining hope for the future, hearing clinical stories of survival, and knowing where to go and what to do. 

These responses guided the development of the support group's foundation.  Common themes overall were the members' desire for education (informational support from those in the medical field), and for sharing personal experiences (emotional support from others).  This finding is directly consistent with results of the study by Helgelson & Cohen (1996) previously mentioned in this article. Although individual variation suggests a needs analysis should be made by individual groups (Butow et al, 2007), it is important to also note the shared desires of group members (informational and emotional support).   

Results

Patients offered positive feedback about the group and their future participation. In the words of one attendee, "Immediately after surgery is an especially scary time; everything is new and different from all you have ever known. Thanks again to all of you guys for taking the time out of your busy day to meet with us. It was good for me and I think we will be able to help out some of the newcomers. Even something as simple as taking a shower is all of a sudden more complicated. Hope I can make it easier for someone else." And it wasn't just positive for the patients. The otolaryngologist residents and other medical professionals also valued the group because it exposed them to an important emotional perspective that is easily overlooked due to the focus on the intense medical issues of the patient with H&N CA.  

As a result of extensive research as well as patient and hospital involvement within the group, the CVAMC's first H&N CA support group began successfully. The goal is that the group will continue to support and educate patients and caregivers, and that the protocol will help others to generate a support group of their own. The results of this study and those previously researched indicate the best way to develop a support group is to cater to the individual needs of the group members.  By doing this, the attendees will maintain interest, feel their needs are being addressed, and gain a sense of guidance and hope from others.  In general, future support group development and continued encouragement will add a critical and valuable dynamic to patient rehabilitation. 

Updates

In spring of 2009, two support group members, their wives, and the group administrator visited local junior high and high schools to speak to students about H&N CA and the dangers of smoking. Students, teachers, and the group members themselves all expressed positive feedback about this experience. Several students stayed after the presentations to talk with the members about experiences with peer pressure and exposure to smoking, fears related to family members who smoke, and also to receive guidance on how to spread awareness of head and neck cancer and the importance of changing lifestyle habits. The teachers praised the presenters, each of whom received hundreds of thank-you letters from students. One teacher remarked, "The frank discussion and willingness to share their stories made a huge impact on our students and hopefully will help them make the right choice not to use tobacco in the future. We are interested in having speakers come back next year in the fall and spring semesters." 

The group members who spoke to the students described this community outreach experience as life-changing, inspiring, and an opportunity to give back. After speaking at one of the schools, a group member commented, "We were very excited about how well it went today.  We went to sleep last night telling each other it had been a good day!"  One of the presenters recently had a recurrence of cancer and his wife remarked, "The support group has meant so much to us. Other members have been to see my husband several times. We just love them. We are so thankful for good friends. The time he spent speaking at schools means so much to him." This same individual expressed, "He made me promise that if he lost his battle I would continue to speak to school-age kids about throat cancer and its relationship to tobacco."   

Sara Chaney, MA, is currently completing her Clinical Fellowship Year in Speech Pathology at the Atlanta VA Medical Center and People First Rehabilitation. She has earned a Bachelor of Science in Speech Pathology/Audiology from Miami University in Ohio and a Master of Arts in Communication Sciences and Disorders from the University of Cincinnati.  Sara is extremely passionate about speech/language pathology, and her specific interests are in head and neck cancer, dysphagia, voice disorders, and CVA.

Kathy Groves-Wright, PhD CCC-SLP, is a speech-language pathologist at the Cincinnati VAMC with expertise in swallowing evaluation and treatment.  She recently completed a Ph.D. at the University of Cincinnati. She works primarily with individuals who have head and neck cancer with resultant voice and swallowing problems.  Her dissertation research investigated perception and acoustics of wet vocal quality in the identification of ingested material in the larynx during swallowing.

Nancy Creaghead, PhD CCC-SLP, is professor and head of the Department of Communication Sciences and Disorders at the University of Cincinnati.  She is responsible teaching in the areas of language acquisition and intervention.  She has had previous experience in preschool classes for language impaired and hearing impaired children and in a special school for learning disabled children.  Her research, publications and presentations have been primarily in the areas of language and phonological acquisition and disorders and classroom communication.  She has lectured at numerous workshops and meetings at the local, state, national and international levels, including the 1978 through 2009 ASHA conventions.  She holds an M.S. from Purdue University and Ph.D. from the University of Cincinnati, is an ASHA Fellow, and has been awarded Honors of the Association.  She was President of the American Speech-Language-Hearing Association in 2002. 

cite as: Chaney, S. , Groves-Wright, K.  & Creaghead, N. (2010, April 06). Blueprint for Creating a Successful Head and Neck Cancer Support Group : Online Exclusive. The ASHA Leader.

References

National Cancer Institute (2009).  A Snapshot of head and neck cancers.  Retrieved March 1, 2010 from http://www.cancer.gov/aboutnci/servingpeople/snapshots/head-neck.pdf [PDF].

The Yul Brynner Head and Neck Cancer Foundation (2008). Retrieved January 30, 2009 from http://www.yulbrynnerfoundation.org/index.htm.  

Bauman, L.J., Gervey, R., & Siegel, K. (1993). Factors associated with cancer patients' participation in support groups. Journal of Psychosocial Oncology, 10(3), 1–20. 

Butow, P.N., Kirsten, L.T., Ussher, J.M., Wain, G.V., Sandoval, M., Hobbs, K.M., et al. (2007). What is the ideal support group? Views of Australian people with cancer and their carers. Psycho-Oncology, 16(11), 1039–1045. 

Cella, D.F., & Yellen, S.B. (1993). Cancer support groups: The state of the art. Cancer Practice, 1, 56–61. 

De Leeuw, J.R.J., DeGraeff, A., Ros, W.J.G., Hordijk, G.J., Blijham, G.H., & Winnubst, J.A.M. (2000). Negative and positive influences of social support on depression in patients with head and neck cancer: A prospective study. Psycho-Oncology, 9(1), 20–28. 

Goldstein, N.E., Genden, E., Morrison, R.S. (2008). Palliative care for patients with head and neck cancer. Journal of the American Medical Association, 299(15), 1818–1825.  

Grande, G.E., Myers, L.B., & Sutton, S.R. (2006). How do patients who participate in cancer support groups differ from those who do not? Psycho-Oncology, 15(4), 321–334. 

Helgeson, V.S. & Cohen, S. (1996). Social support and adjustment to cancer: Reconciling descriptive, correlational, and intervention research. Health Psychology, 15(2),135–148. 

Manning, D.L., Dickens, C. (2007). Cancer information and support centres: Fixing parts cancer drugs cannot reach. European Journal of Cancer Care, 16, 33–38. 

Price, M.F., Butow, P., Kirsten, L. (2006). Support and training needs of cancer support group leaders: A review. Psycho-Oncology, 15(8),651–653. 

Semple, C.J., Sullivan, K., Dunwoody, L., & Kernohan, W. G. (2007). Psychosocial interventions for patients with head and neck cancer: Past, present, and future. Cancer Nursing, 27(6), 434–441. 

Taylor, S.E., Falke, R.L., Shoptaw, S.J., Lichtman, R.R. (1986). Social support, support groups, and the cancer patient. Journal of Consulting and Clinical Psychology, 54(5), 608–615. 

Ussher, J., Kirsten, L., Butow, P., & Sandoval, M. (2006). What do cancer support groups provide which other supportive relationships do not? The experiences of peer support groups for people with cancer. Social Sciences & Medicine, 62(10), 2565–2576. 



Results of Needs-Based Assessment

What would you most like to get out of this support group?

Support/comfort (3); to share experiences (3); hope (2); to learn tricks from others (2); information (1); camaraderie (1); inspiration (1); reality of the situation (1); communication between the doctor & patients (1); help from others further along about coping with the daily problems of the cancer (1)

What are your immediate needs at this time?

Hope for the future (2); supplies (2); faith (1); emotional support (1); help with mouth/saliva/throat/mucus issues (1); need for nothing presently but wanted to help others (1)

In what areas do you feel you need the most support?

Adapting to the situation/life-changing circumstances (2); sharing experiences (2); learning more to help self (2); learning new technology and methods (2); gaining hope for the future (1); hearing clinical stories of survival (1); knowing where to go and what to do (1)

What do you want to learn more about?

Others' similar experiences (2); laryngectomy/stoma (2); a chest flap pectoral pull-up (1); living with terminal cancer (1); new treatments/ideas (1); prevalence of the condition (1); frequency of re-occurrence (1); cleaning tips (1)

What are some ideas you might have for our support group?

To ask the group what they want (2); share experiences of self and others (2); use a story board or flip chart (1); find patients with similar cancers (1); facilitate two-way discussion (1); get doctor input (1); have patient input (1); have access to textbooks/resources (1)

What are some ideas you might have for events you would like to see the club put on or speakers you'd like to come to meetings?

effective speakers with a clear message that connects to group (5); ways to keep the hardness cleared/cleaning (3); the Stop Smoking Clinic/smoking cessation program (2)

What are your interests? Would you like to teach the club a skill?

Meeting others who live the way we do (1); not sure yet (1); individual use of material (1); putting in a catheter and suction use (1); any way to help the group (1)

How would you like to be involved in this group?

Participation (5); helping others before and after surgery (4); any way possible (2); did not yet know (2)

Are you interested in receiving a weekly small e-mail newsletter?

All respondents showed interest.



  

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