Curia | Empowering Cancer Patients

Finding support through cancer communities

Finding support through cancer communities

cancer-communities

The first reaction to getting diagnosed with cancer often evokes questions around, “Why Me?” and by thoughts drawn more out of the ‘fear’ of the unknown. Gradually, the ‘hard to accept’ fact translates into life-changing treatment decisions. 

Therefore, seeking the right information1 and the source of such information becomes crucial for patients and their caregivers. 

Interpreting Fear 

However, the information needs to transition into actionable long-term treatment goals. Guidance from the medical fraternity reaffirms that there is an entire 2ecosystem that can be tapped to cope with the disease. Patients often consume all possible data and information on managing their ‘cancer.’ But this can be an exhausting task especially with the r that no two cancer conditions are identical. 

Besides, the fear of loneliness in combating the condition is a life-long battle. Terminal stage cancer patients 3experience more anxiety which can trigger pessimism about the future. They usually fear the onset of death, anticipate greater pain parameters, and suffer from a loss of reputation, with the progress of their disease. 

Besides, the anticipated isolation, psychological4, financial, and social implications can be overwhelming for both patients and their caregivers. 5Research has indicated that patients with cancer must be positive in the present moment. This requires an understanding of what to expect from the treatment pathways, also educating one’s immediate family and community. 

Patients with chronic illness receive high social support, therefore, manage their health better. This has given rise to 6psycho-oncology, especially in the management of breast cancer where social support helps alleviate distress, depression while reducing the risk of recurrence.

Peer Dynamics 

The aspect of seeking, hearing, and benefitting from other cancer patients undergoing similar treatment dilemmas or social sensitization is encouraged. 7Research on peer-group dynamics has studied data generated from one-on-one interactions via face-to-face connections, telephone conversations, and also group talks. 

Recently, Candlelighters Childhood Cancer Foundation of Nevada rooted for Batman, Wonder Woman, Superman, and other community heroes for their annual fundraiser campaign in their battle against Childhood Cancer at Superhero 5K. Not a new idea, yet continues to bring forth the courageous spirit, and bravery of individuals and families in dealing with cancer. 

Support is garnered from within communities and families, outreach organizations, the healthcare fraternity, and in recent times through online communities8 and app-based tools. 

9Researchers have categorized the ‘life cycle’ of a community into 4 stages – inception, establishment, maturity, and mitosis representing distinct traits and needs. They have taken such community management strategies, resources, and expertise in building and maintaining a vibrant online health community too, along with other offline support mechanisms. 

Community Connections

Cancer Patients – Buddy support systems can be in the form of personal experiences leading to a more practical approach in sharing information. This informal method offers relief in finding the ‘silver lining’ in the healing process. 

Cancer Survivors – Seeking local cancer support programs and organisations enables emotional and medical management. Participation through workshops helps healing and stepping up possibilities for a managed cure. 

Doctors – The virtual world has thrown open more opportunities to connect to the medical fraternity in seeking second opinions and also aligning to a bespoke doctor-patient model for inclusive treatments. 

Clinicians and Researchers – They hold the ‘root’ directory leading to possible cures, which might be inaccessible to regular cancer patients. One way forward is through the doctor-led model that can guide a patient towards research organisations and suitable clinical trials as another line of treatment. 

Caregivers – The community of caregivers can encompass anyone – family, friends, and relatives who care for the patient’s wellbeing. With the progression of a cancer can be for a lifetime for patients as well as their caregivers. It is equally important for caregivers to find intermittent respite in overcoming their fatigue. 

Conclusion 

While each experience of malignancy would be different, sustainable communication is the key for patients suffering cognitive distortions when sharing disease-related information with doctors or caregivers. Such vulnerability termed as the ‘Injured Self’ can be avoided through a supportive community, medical and caregiver interventions. 

References: 

  1. Phin Chua, G., Khoon Tan, H., & Gandhi, M. (2018, September 25). What information do cancer patients want and how well are their needs being met? NCBI Resources. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6214674/
  2. Young, C. (2013, June 11). Community Management That Works: How to Build and Sustain a Thriving Online Health Community. JMIR Publications. https://www.jmir.org/2013/6/e119/?fb_action_ids=10201038089052250&fb_action_types=og.likes&fb_source=other_multiline&action_object_map=%7B%2210201038089052250%22%3A474505472637092%7D&action_type_map=%7B%2210201038089052250%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D
  3. ÇıRacı, Y., Nural, N., & Saltürk, Z. (2016, March 23). Loneliness of oncology patients at the end of life. NIH National Library of Medicine. Retrieved August 24, 2016, from https://pubmed.ncbi.nlm.nih.gov/27007284/
  4. Campbell, H. S., Phaneuf, M. R., & Deane, K. (2004, January 24). Cancer peer support programs—do they work? ScienceDirect. Retrieved January 29, 2003, from https://www.sciencedirect.com/science/article/abs/pii/S073839910300301X?via%3Dihub
  5. Wilkes, L., & O’Baugh, J. (2003, May). Positive Attitude in Cancer: Patients’ Perspectives. ResearchGate. https://www.researchgate.net/publication/10782897_Positive_Attitude_in_Cancer_Patients’_Perspectives
  6. Sebri, V., Mazzoni, D., Triberti, S., & Pravettoni, G. (2021, September 20). The Impact of Unsupportive Social Support on the Injured Self in Breast Cancer Patients. Frontiers in Psychology. https://www.frontiersin.org/articles/10.3389/fpsyg.2021.722211/full
  7. Hoeya, L. M., Ieropolia, S. C., Whitea, V. M., & Jefford, M. (2007, July 20). Systematic review of peer-support programs for people with cancer. Researchgate.Net. Retrieved November 23, 2007, from https://www.researchgate.net/publication/7875996_Peer_support_for_cancer_patients
  8. Frost, J., Vermeulen, I. E., & Beekers, N. (2014, May 15). Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities. JMIR Publications. https://www.jmir.org/2014/5/e126
  9. Young, C. (2013, June 11). Community Management That Works: How to Build and Sustain a Thriving Online Health Community. JMIR Publications. https://www.jmir.org/2013/6/e119/?fb_action_ids=10201038089052250&fb_action_types=og.likes&fb_source=other_multiline&action_object_map=%7B%2210201038089052250%22%3A474505472637092%7D&action_type_map=%7B%2210201038089052250%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D

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