Your cancer experience may trigger fears about dependency and the loss of autonomy. Acute awareness of your mortality may threaten the values that shape your meaning of life. What do you do when experiences of loss of good health and fear of dying from cancer overwhelm your every thought?
Why not turn to survivors who have been there before? True, their insights and experiences will not be able to prepare you thoroughly for your cancer survivorship experience. After all, your experience is unique to you. You might however get a glimpse of the many ways cancer support groups or individual counseling can help you in what at times might be very tumultuous times.
Cancer support groups and individual counseling can help you potentially improve your quality of life. I just wanted to take a moment to illustrate how cancer patients have used support groups and individual counseling to help them deal with their cancer experience. In no particular order, here are eight studies that speak to why we offer cancer support groups and why we think that you might benefit from our survivorship programs.
The first study expresses the difficulties some cancer patients might face in dealing with the emotional mayhem of diagnosis, treatment, and later survivorship. You might find some similarities to your situation.
One: Addressing Personal Emotional and Coping Difficulties
Nekolaichuk, Turner, Collie, Cumming, and Stevenson (2013) directed a study to understand patients’ experiences of attending an individual psycho-oncology counseling service. Nekolaichuk and colleagues report four themes cancer patients elaborated on while describing their suffering and need for psychosocial and emotional support (Nekolaichuk et al., 2013). Emerging themes were
(a) distress and the need for support,
(b) challenges to service access,
(c) benefits of service access, and
(d) the therapeutic encounter.
Distress and Need for Support
As cancer patients spoke about their need for support four subthemes surfaced. Does any of these themes seem familiar to you?
- Difficult Emotions: Participants reported on the overwhelming impact the diagnosis of cancer had for themselves as well as for those around them (Nekolaichuk et al., 2013).
- Family Burden: Cancer patients worried about the effect of cancer diagnosis on the family. Reports ranged from individual family members becoming depressed. Some reported that the whole family was sad. Cancer patients also felt lonely and isolated as a result of not being able to discuss freely cancer-related issues with family members (Nekolaichuk et al., 2013).
- Breaking Point: Cancer patients sought cancer support groups after reaching a “breaking point” of being emotionally paralyzed or having no one to talk to about cancer before receiving advice (Nekolaichuk et al., 2013).
- Losing the Safety Net: Participants felt overwhelmed after end of treatment. The loss of the “medical safety net” (p. 597) gave much rise to anxiety and persistent dread of tumor recurrence (Nekolaichuk et al., 2013).
Challenges to Service Access
You might have experienced some of the following challenges as well? Although participants acknowledged their distress and the importance for support, patients met challenges or barriers to accessing counseling services. The participants had a difficult time finding out about cancer support groups reporting that information was either not provided at all or too late in the illness trajectory (Nekolaichuk et al., 2013).
If you are feeling “social stigma” because of seeking help, especially if you are a man, you are probably not alone. You might also have difficulties locating cancer support groups or individual counseling that fits your schedule. However, when you finally can get access to support services, research suggest that you might be quite surprised at the benefits of counseling (Nekolaichuk et al., 2013).
Benefits of Service Access
Here are some benefits that you might expect from individual counseling. Group members remarked on how soon their needs were being met. Participants noted that only a couple of sessions helped them to “put everything back in order” and “unlock some of the mental disabilities” (Nekolaichuk et al., 2013, p. 598).
Nekolaichuk et al. (2013) also write that participants viewed the counselor as a key person to usher in much-wanted change.
The Therapeutic Encounter
The participants portrayed an impartial, holistic approach, combined with the counselor’s therapeutic method, as instrumental to explore, adapt, and change. Normalizing emotions allowed participant to marshal their coping resources and attend to self-care more efficiently. They also believed that the opportunity to clarify their thoughts and feelings, and to receive guidance from a counselor, enhanced their coping abilities (Nekolaichuk et al., 2013).
Nekolaichuk and colleagues (2013) close their paper (p. 602)
Our findings highlight the profound value of the early phase of counseling, as well as the types of interventions that help motivate cancer patients to explore, adapt, and move forward with renewed energy.
What about those persons who insist that you keep a positive attitude throughout your entire cancer ordeal? Is there something to it?
Two: Can Cancer Support Groups Help You “Shine a Ray of Light” in Dark Places?
A thought-provoking study conducted by Saarelainen (2012) meant to answer two questions:
- Which kind of inner designs shaped positive adjustment to cancer?
- What kind of external support was looked-for to adapt to the changed life situation?
Inner design, according to Saarelainen (2012, p. 55)
…refers to methods that helped the patients to cope with difficulties…. [which] were products created by a specific situation [cancer]
Positive adjustment is a multifaceted term that necessitates an explanation. Saarelainen’s (2012) research describes positive change through the experiences of the participants themselves. When a patient labeled something as helpful or relevant to his /her coping, it was construed positive change. Saarelainen’s (2012) article is thus about positive adjustment factors.
Vital to show is that there is no one single “inner design” that could guarantee (so to speak) positive change. Saarelainen’s (2012) research however identified several factors that might give rise to positive change. The figure below illustrates the factors for “Inner Designs” and External Support” needed to bring about positive change.
Saarelainen’s (2012) research further hints at the idea that you might benefit tremendously from an organized support system or network that does not end with the end of regular treatment.
Three: Managing Cancer and Living Meaningfully
Lo and colleagues (2014) present early data about the effectiveness of a novel psychotherapy, Managing Cancer And Living Meaningfully (CALM). CALM, a brief, manualized, semi-structured individual psychotherapy for patients with advanced cancer, was devised to help patients with cancer cope with psychosocial challenges. Psychosocial difficulties may contribute to emotional anguish and diminish well-being. Lo and colleagues’ primary outcome measure was depressive symptoms. Secondary outcome measures were death anxiety, attachment security, spiritual well-being and psychological growth.
Lo and colleagues (2014) contend that patients with advanced disease prefer individual psychotherapy. Scheduling sessions with more ease makes individual psychotherapy more accessible to those patients.
Lo et al. (2014) end their paper by writing that CALM is a potential brief intervention to relieve distress and promote psychological growth and well-being in patients with advanced cancer.
This brings me to the next exemplar. There is a lack of cancer support groups for non-breast and non-prostate cancers. However, it is not clear if the lack exists due to the unavailability of groups, or when offered, due to a lack of interest.
Four: Providing Cancer Support Groups Based on Diagnosis
Lung cancer is the leading cause of death in the United States. Lung cancer causes more deaths than the next three common cancers combined (colon, breast and pancreatic).
The lung cancer five-year survival rate (17.8%) is lower than many other leading cancer sites, such as the colon (65.4%), breast (90.5%) and prostate (99.6%) (American Lung Association, n.d.).
The five-year survival rate for lung cancer is 54.0 percent for cases detected when the disease is still localized (within the lungs). However, only 15 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4.0 percent (American Lung Association, n.d.).
As you only can imagine, a diagnosis of cancer of the lung and bronchus carries with it a disheartening prognosis. In 1999, there were 11 lung cancer support groups in existence in the US. McCarthy, Thompson, Rivers, and Jahanzeb (1999) surveyed these 11 groups and asked what they hoped to achieve with their groups. All facilitators gave “patient support” as the reason. Other reasons given were “stigma in conjunction with support” and a “somewhat disenfranchised population” (p.112).
While the situation seems to have improved somewhat, there are only two lung cancer support groups in Michigan. Based on data from the Lung Cancer Alliance, both cancer support groups are on the east side of the state (Lung Cancer Alliance, n.d.)
In Kent, Ottawa and Muskegon counties roughly 577 (State Cancer Profiles, 11/21/14) persons get diagnosed with lung cancer every year? Where do these patients go to seek support?
Lack of access/lack of interest for support groups and individual counseling becomes also clear when looking at support groups for men.
Five: Tailored and Targeted Support for Men
Cancer support groups for men are designed to help build illness-specific knowledge, adapt to illness, manage side effects, distress, and uncertainty, as well as sustain relationships. In spite of this information, a recent review by Wenger, Oliffe, and Bottorff (2014) shows that psychosocial oncology support is primarily accessed by Caucasian, heterosexual, married, middle- to older-age adult men with prostate cancer.
Bizarrely, though, few men, in general, take part in online and in-person cancer support groups. Participation rates are inferior to men marginalized by sexual identity, race, and/or limited economic resources.
Wenger et al. (2014) pinpoint a need for more tailored and targeted support groups for men. Attention needs to be given to the experiences of men with nonprostate cancers. Other challenges, according to Wenger and colleagues (2014) are barriers to entry to cancer support groups for men. For example, men might not join support groups due to time constraints, heavy work schedules, and discomfort in being reminded of their cancer. Health restrictions, a lack of interest or want to receive help, or the perception that the intervention will not bring benefit might prevent men from joining a support group also.
We will assess community needs for support groups for men and then, if warranted, offer support groups that meet the needs for these men.
Six: Self-Transcendence
Viktor Frankl suggested that people faced with adversity have an inherent capacity to relate to things outside of themselves and that through reaching out, they find new purpose and meaning in their lives.
He labeled this capacity “self-transcendence.” Frankl submitted that people exceed themselves in several ways. For example, people might give themselves to the world through family, profession, and the creative process. People might also experience the world through receptiveness to others and the environment and through adopting an attitude of acceptance when faced with an unchangeable situation (Coward & Kahn, 2005).
I imagine you are not looking to join a support group for the specific purpose of “self-transcendence?” However, according to Coward and Kahn (2005, p. 280) the work done in such a support group could potentially lead you to
…move beyond the constraints of a difficult situation and transcend feeling like victims to become survivors.
As mentioned above, cancer patients worry about the impact cancer might have on the family. Perhaps rightly so, as a diagnosis of cancer impacts the entire family. That is why it is important to consider also caregivers when designing a support program.
Seven: Cancer Support Groups Prepare Family Caregivers
As illustrated by the Trussel’s cartoon above, family members are perhaps ill prepared to take on and embrace the caregiver role. That is despite the trend that health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness (Henriksson, Arestedt, Benzein, Ternestedt, & Andershed, 2013).
Caretakers are called upon to take on tasks previously undertaken by specialists. The responsibilities of care may include complex physical and medical tasks, as well as patient advocacy, decision-making, emotional support, and coordination of care. The very real consequences of taking on the role of a family caregiver include an increased risk of anxiety and depression, as well as physical health problems (Henriksson et al., 2013).
The report by Henriksson and colleagues (2013) shows that cancer support groups for caretakers can increase feelings of preparedness, competence and reward among family caregivers.
From the information shared thus far, it seems that cancer support groups are an excellent idea. It seems that cancer patients, as well as family members, and other caregivers can benefit from cancer support groups if they can find them.
There still seems to be much validity to the conclusion drawn by Cunningham in his 2002 paper.
Eight: Cancer Support Groups Need to Become an Integral Part of Cancer Care
Cunningham (2002) writes that advocating for cancer support groups needs to help patients and not being left to the patient to ask for them. Furthermore, to allow for differences in preferences and abilities, different modes of help should ideally be made available. Cunningham argues for organizing the delivery of coping strategies in a progressive way to encourage the development of greater coping skills.
Cunningham (2002) argues (p. 68) that psychosocial care, especially in the form of group support
…needs to evolve from being an optional extra to becoming an integral part of management of cancer.
Conclusion
Cancer comes with many challenges, including multiple physical symptoms and progressive physical deterioration. These may trigger fears about dependency and the loss of autonomy, mortality and may threaten the values that shape meaning in life (Lo et al., 2014).
Disease burden and a variety of psychological and social factors have been associated with depression and demoralization, death anxiety and the loss of a sense of meaning and purpose (Lo et al., 2014).
In the unfortunate event of finding yourself near the end of life, you may be focused on life closure and death preparation. If you find yourself entering long-term survivorship, you might still be facing the strains of your illness. For you, the challenge will be to find a balance between awareness of your impending mortality and an awareness of uncertainty of tumor recurrence. Coupling this with trying to live in the present moment has been termed “double awareness” (Lo et al., 2014).
There is no doubt that cancer support groups that focus on discussing problems and expression of emotion can be useful. The exemplars highlighted here however point to evidence that participants benefit more if they can also learn coping skills in addition to receiving emotional support.
The eight studies from which we drew our examples for cancer support groups and individual counseling highlight the following benefits:
- Put everything back in order
- Unlock some of the mental disabilities
- Mobilize coping resources
- Helped positively adjust to cancer
- Spiritual well-being and psychological growth
- Relieve distress and promote psychological well-being
- Transcend feeling like a victim
- Caretaker groups increase feelings of preparedness, competence, and reward
While at first, the learning of new skills may not appeal to you, because it requires extra effort on your part, the sensible thing is to incorporate skill building into group support.
The cancer support groups and mind-body skill building groups we are offering at the Absenger Cancer Education Foundation are all designed to offer support while incorporating essential skill building techniques for enhanced self-care.
The Absenger Cancer Education Foundation is West Michigan’s only organization dedicated to integrating evidence-based mind-body medicine interventions designed and tailored to guide and support you and your family’s survivorship needs.
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References:
Coward, D. D., & Kahn, D. L. (2005). Transcending Breast Cancer: Making Meaning From Diagnosis and Treatment. Journal of Holistic Nursing, 23(3), 264–283. doi:10.1177/0898010105277649
Cunningham, A. J. (2002). Group Psychological Therapy: An Integral Part of Care for Cancer Patients. Integrative Cancer Therapies, 1(1), 67–75. doi:10.1177/153473540200100116
Henriksson, A., Arestedt, K., Benzein, E., Ternestedt, B.-M., & Andershed, B. (2013). Effects of a support group programme for patients with life-threatening illness during ongoing palliative care. Palliative Medicine, 27(3), 257–264. doi:10.1177/0269216312446103
Lo, C., Hales, S., Jung, J., Chiu, A., Panday, T., Rydall, A., … Rodin, G. (2014). Managing Cancer And Living Meaningfully (CALM): Phase 2 trial of a brief individual psychotherapy for patients with advanced cancer. Palliative Medicine, 28(3), 234–242. doi:10.1177/0269216313507757
Lung Cancer Fact Sheet – American Lung Association. (n.d.). Retrieved November 20, 2014, from http://www.lung.org/lung-disease/lung-cancer/resources/facts-figures/lung-cancer-fact-sheet.html
McCarthy, M. M., Thompson, A., Rivers, S., & Jahanzeb, M. (1999). The Benefits of Support Group Participation to Lung Cancer Survivors — An Evaluation. Clinical Lung Cancer, 1(2), 110–117. doi:10.3816/CLC.1999.n.008
Nekolaichuk, C. L., Turner, J., Collie, K., Cumming, C., & Stevenson, A. (2013). Cancer Patients’ Experiences of the Early Phase of Individual Counseling in an Outpatient Psycho-Oncology Setting. Qualitative Health Research, 23(5), 592–604. doi:10.1177/1049732312470567
Saarelainen, S. (2012). Positive Adjustment to Cancer – Meaning of Inner Design and External Support. Procedia – Social and Behavioral Sciences, 45, 54–64. doi:10.1016/j.sbspro.2012.06.542
State Cancer Profiles > > Table. (n.d.). Retrieved November 20, 2014, from http://statecancerprofiles.cancer.gov/incidencerates/index.php?stateFIPS=26&cancer=047&race=00&sex=0&age=001&type=incd&sortVariableName=count&sortOrder=desc
Support Groups – Lung Cancer Alliance. (n.d.). Retrieved November 20, 2014, from http://www.lungcanceralliance.org/get-help-and-support/coping-with-lung-cancer/support-groups/
Wenger, L. M., Oliffe, J. L., & Bottorff, J. L. (2014). Psychosocial Oncology Supports for Men: A Scoping Review and Recommendations. American Journal of Men’s Health. doi:10.1177/1557988314555361
