Cancer Support Community

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The Cancer Support Community (CSC) focuses on three areas of support: direct service delivery, research, and advocacy.

Contents

The organization includes an international network of Affiliates [1] that offer social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. Its Research and Training Institute [2] conducts psychosocial, behavioral and survivorship research. CSC furthers its focus on patient advocacy through the Cancer Policy Institute, [3] informing public policy in Washington D.C. and across the nation.

Individual gifts, corporate and foundation contributions, and educational grants are the major sources of support for CSC.

History

The Cancer Support Community formed in 2009 following the merger of The Wellness Community and Gilda's Club [4] The Wellness Community was founded in 1982 by Harold and Harriet Benjamin with Shannon McGowan in California. [5] They wanted to create something that had previously been missing in cancer care—an organization that would provide social and emotional support to cancer patients, their families, friends and caregivers. [6] Gilda's Club was founded in 1991 in honor of Saturday Night Live comedian and former ovarian cancer patient, Gilda Radner, after her passing, by her husband, Gene Wilder, and Joanna Bull with other friends and family. [7] Gilda's Club opened locations to provide social and emotional support for people living with cancer nationwide while the Wellness Community locations remained on the West Coast.

In 2007 the Institute of Medicine released a pivotal report [8] on the importance of addressing the social and emotional needs of individuals living with cancer, which was a practice both the Wellness Community and Gilda's Club had been implementing for years. Not long after, to be able to better serve more individuals living with cancer, the Wellness Community and Gilda's Club merged to become the Cancer Support Community. [9]

Programs and services

Support

CSC provides a toll-free Cancer Support Helpline [10] which takes calls from patients, families and health professionals seeking information, access to local and national resources, and counseling. An online chat service is also part of the support services. CSC also hosts an online support group called the Living Room. The community includes message boards and professional facilitated online support groups.

Affiliate Network

The Cancer Support Affiliate Network consists of 42 licensed affiliates, 150 satellite locations and a growing number of health care partnerships. [11] [12] Affiliates provide programs free of charge to anyone affected by cancer, including patients, survivors, caregivers, loved ones and children. [13] These programs include support groups, short-term individual counseling, social activities, resource and referral services, educational sessions and health and wellness programs.

Educational resources

CSC produces the Frankly Speaking About Cancer program series in several formats to meet the educational needs of patients and families. The series includes eBooks, print material, videos, webinars and a podcast. [14]

Online support

The Living Room is CSC's online support group in the form of message boards and support groups. [15] People impacted by cancer can join, post to the message boards, or find a support group. [16]

Research

The Cancer Support Community established the Research and Training Institute (RTI) to conduct psychosocial, behavioral and survivorship research for people living with cancer. [17] The goal of the research is to provide improved resources to individuals touched by cancer.

The Cancer Support Community uses evidence-based interventions to improve the patient experience by adding to the body of psychosocial research, developing tools and education resources. [18] [19] [20] [21] [22]

Among their key research programs and services are:

Policy and advocacy

The Cancer Policy Institute at the Cancer Support Community works with advisors and friends to advocate the mandate that comprehensive, quality cancer care includes medical care, as well as social and emotional care. The Cancer Policy Institute has initiatives, [28] training opportunities, learning materials, [29] and events. CSC's Grassroots Advocacy Network is open to anyone to join. The network provides a place to learn more about key issues that are important to cancer patients and their loved ones, and make one's voice heard at a local and national level. CSC positions include: access to care for all patients, quality as a central theme, and research as a critical priority. [30]

Use of funds

In 2015, the Cancer Support Community reported $8,731,796 net assets at the end of the year. In the same year, CSC reported $5,981,094 on expenses. Of those expenses, 82% went to programs and services, 9% went to management and general, and the other 9% went to general fundraising. [11]

Evaluations and ratings

The Cancer Support Community has received numerous high-level charity ratings including the following:

Related Research Articles

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual." In the past, palliative care was a disease specific approach, but today the WHO takes a broader approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness.

Cancer support groups are meetings that offer a safe space for people affected by cancer to share their experiences and emotions with other people who have cancer. People in stressful situations benefit from having a good social support system, and a cancer support group can be part of a support system.

<span class="mw-page-title-main">Mental health</span> Level of psychological well-being

Mental health encompasses emotional, psychological, and social well-being, influencing cognition, perception, and behavior. It likewise determines how an individual handles stress, interpersonal relationships, and decision-making. Mental health includes subjective well-being, perceived self-efficacy, autonomy, competence, intergenerational dependence, and self-actualization of one's intellectual and emotional potential, among others.From the perspectives of positive psychology or holism, mental health may include an individual's ability to enjoy life and to create a balance between life activities and efforts to achieve psychological resilience. Cultural differences, subjective assessments, and competing professional theories all affect how one defines "mental health". Some early signs related to mental health difficulties are sleep irritation, lack of energy, lack of appetite and thinking of harming yourself or others.

<span class="mw-page-title-main">Gilda's Club</span> Community organization for cancer patients, survivors, and their families and friends

Gilda's Club is a community organization for people with cancer, their families and friends. Local chapters provide meeting places where those who have cancer, their families, and friends can join with others to build emotional and social support as a supplement to medical care. Free of charge and nonprofit, Gilda's Club chapters offer support and networking groups, lectures, workshops and social events in a nonresidential, homelike setting. The club was named in honor of the original Saturday Night Live cast member Gilda Radner, who died of ovarian cancer in 1989.

Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other. It commonly refers to an initiative consisting of trained supporters, and can take a number of forms such as peer mentoring, reflective listening, or counseling. Peer support is also used to refer to initiatives where colleagues, members of self-help organizations and others meet, in person or online, as equals to give each other connection and support on a reciprocal basis.

Residential care refers to long-term care given to adults or children who stay in a residential setting rather than in their own home or family home.

<span class="mw-page-title-main">Adult daycare center</span>

An adult daycare center is typically a non-residential facility that supports the health, nutritional, social, and daily living needs of adults in a professionally staffed, group setting. These facilities provide adults with transitional care and short-term rehabilitation following hospital discharge. The majority of centers provide meals, meaningful activities, and general supervision. The care provided is often a social model or a medical model provided in order to improve participants health and guide their progress in the right direction. Demand for adult daycare centers is increasing with the need for assistance in old age or guidance to reintegrate into society after injury, illness or addiction, and accommodation to return to their former lives or improve upon their quality of life.

Psycho-oncology is an interdisciplinary field at the intersection of physical, psychological, social, and behavioral aspects of the cancer experience for both patients and caregivers. Also known as psychiatric oncology or psychosocial oncology, researchers and practitioners in the field are concerned with aspects of individuals' experience with cancer beyond medical treatment, and across the cancer trajectory, including at diagnosis, during treatment, transitioning to and throughout survivorship, and approaching the end-of-life. Founded by Jimmie Holland in 1977 via the incorporation of a psychiatric service within the Memorial Sloan Kettering Cancer Center in New York, the field has expanded drastically since and is now universally recognized as an integral component of quality cancer care. Cancer centers in major academic medical centers across the country now uniformly incorporate a psycho-oncology service into their clinical care, and provide infrastructure to support research efforts to advance knowledge in the field.

Patient advocacy is a process in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, concerned with healthcare standards or with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates are independent and some work for the organizations that are directly responsible for the patient's care.

Psychiatric rehabilitation, also known as psych social rehabilitation, and sometimes simplified to psych rehab by providers, is the process of restoration of community functioning and well-being of an individual diagnosed in mental health or emotional disorder and who may be considered to have a psychiatric disability.

<span class="mw-page-title-main">Caregiver</span> Person helping another with activities of daily living

A caregiver or carer is a paid or unpaid member of a person's social network who helps them with activities of daily living. Since they have no specific professional training, they are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.

As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall cost and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.

Family caregivers are “relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services.”

The Wellness Community (TWC) is an international, non-profit organization that provides support and education to people with cancer and those who care for them. It was founded in Santa Monica in 1982 by Harold Benjamin, his wife Harriet Benjamin and Shannon McGowan. In addition to providing support groups, education and other programs, TWC conducts research to quantify and document the benefits of psychosocial support for people with cancer. Research is done in collaboration with Catholic University, M.D. Anderson Cancer Center, Rutgers University, Stanford University, University of California, Los Angeles, and University of California, San Francisco. In 2009, it merged with Gilda's Club to form the Cancer Support Community.

An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:

The Pancreatic Cancer Action Network (PanCAN) is a United States-based 501(c)(3) charity that funds research, provides patient/caregiver support, conducts community outreach and advocates for increased federal research funding for those affected by pancreatic cancer.

Caregiving by country is the regional variation of caregiving practices as distinguished among countries.

The San Francisco model of AIDS care began in 1983 in wards 86 and 5B of San Francisco General Hospital. The focus of this model was not only on the health of each patient with AIDS, but also on the well-being of each person. As AIDS was beginning to be treated as a significant epidemic, San Francisco General Hospital recognized the need to create new standards of care for a disease that had never before been experienced. Compassionate care has now become a priority worldwide and an expected standard in hospitals as there places a greater emphasis on the social, psychological, and economic aspects of treatment in addition to the medicine.

<span class="mw-page-title-main">Imerman Angels</span> American non-profit organization

Imerman Angels is a non-profit organization founded in the United States in 2006 that provides guidance and resources with an emphasis on one-on-one support for cancer fighters and caregivers. Jonny Imerman founded the organization after being diagnosed with testicular cancer in 2003 and realizing the need for one-on-one mental support. Imerman Angels connects cancer patients with cancer survivors to provide support through their journey from having cancer to being cancer-free. Patients are connected with nearby mentors through a database of over 6,000 cancer survivors.

Coordinated Specialty Care (CSC) is a recovery-oriented treatment program designed for people with first episode psychosis (FEP). CSC consists of collaborative treatment planning between the client and the client's care team, consisting of mental health clinicians, psychiatrists, and case managers. CSC includes individual and family therapy, medication management, psychoeducation and support, case management, and support surrounding education and employment goals. The program is considered an early psychosis intervention and is intended to be used shortly after symptoms onset.

References

  1. ↑ "Find a Cancer Support Community Affiliate" . Retrieved 2017-07-19.
  2. ↑ "Cancer Research Institute | Cancer Support Community" . Retrieved 2017-07-19.
  3. ↑ "Cancer Policy Institute Aims and Positions | Cancer Support Community" . Retrieved 2017-07-19.
  4. ↑ AUBERT, AMY (2016-08-30). "Cancer support group honors Gene Wilder, Gilda Radner for ongoing legacy". Wjla.com. Retrieved 2016-11-07.
  5. ↑ "Harriet Benjamin, Wellness Community Co-Founder, 85 - Obituaries". Jewishjournal.com. Retrieved 2016-11-07.
  6. ↑ "Harold Benjamin 80 Founder of Wellness Community Dies". The New York Times . 25 December 2004. Retrieved 2016-11-07.
  7. ↑ Williams, Lena (1994-11-03). "Gilda's Club for Cancer Patients Is Rising". The New York Times. New York City. Retrieved 2016-11-07.
  8. ↑ "Archived copy" (PDF). Archived from the original (PDF) on 2016-11-07. Retrieved 2016-11-07.{{cite web}}: CS1 maint: archived copy as title (link)
  9. ↑ "Merger With The Wellness Community » Gildas Club QC". Gildasclubqc.org. Archived from the original on 2016-11-07. Retrieved 2016-11-07.
  10. ↑ "Cancer Support Helpline - Get Help Now" . Retrieved 2017-07-19.
  11. 1 2 "Redefining the Cancer Experience" (PDF). Cancersupportcommunity.org. Retrieved 2016-11-07.
  12. ↑ "Financials | Cancer Support Community" . Retrieved 2017-07-14.
  13. ↑ KWQC Staff (30 August 2016). "Gilda's Club Quad Cities statement on the passing of Gene Wilder". Kwqc.com. Archived from the original on 7 November 2016. Retrieved 2016-11-07.
  14. ↑ "Cancer Education: Frankly Speaking About Cancer Series" . Retrieved 2017-07-19.
  15. ↑ "The Living Room". Cancersupportcommunity.org. Retrieved 2016-11-07.
  16. ↑ "Mesothelioma Support Groups - Benefits and Resources". Mesotheliomagroup.com. Retrieved 2016-11-07.
  17. ↑ "Member Spotlight: Cancer Support Community". 7 July 2016.
  18. ↑ "Cancer Survival: Longer Lives Bring Long-Term Issues". ABC News. 12 October 2011.
  19. ↑ "Evolving Strategies for the Management of Multiple Myeloma : A Managed Care Perspective" (PDF). Cancersupportcommunity.org. Retrieved 2016-11-07.
  20. ↑ "Attitudinal barriers to participation in oncology clinical trials: factor analysis and correlates of barriers" (PDF). Cancersupportcommunity.org. Retrieved 2016-11-07.
  21. ↑ "Insight into Patient Access to Care in Cancer" (PDF). Cancersupportcommunity.org. Retrieved 2016-11-07.
  22. ↑ "Study of breast #cancer patients finds discrepancy in definition of value in care".
  23. ↑ Community, Cancer Support (2016-02-02). "New Registry to Examine Full Impact of Stomach Cancer".
  24. ↑ AM, Linda Marsa On 7/23/15 at 6:37 (23 July 2015). "The High Cost of Cancer Care: Your Money or Your Life?". Newsweek .
  25. ↑ "Cancer Support Community's new service". 2012-07-21.
  26. ↑ Landro, Laura (27 August 2012). "To Treat the Cancer, Treat the Distress". Wall Street Journal.
  27. ↑ Landro, Laura (2012-08-28). "New Help for Distressed Cancer Patients". Wall Street Journal.
  28. ↑ Admin. "CSC Teams Up with EHE International for Cancer Awareness Campaign". Archived from the original on 2016-11-08. Retrieved 2016-11-07.
  29. ↑ Printz, Carrie (1 July 2014). "Cancer and the affordable care act: Despite some challenges, most cancer experts say the new law benefits patients and survivors". Cancer. 120 (13): 1911–1912. doi:10.1002/cncr.28838. PMID   24939458. S2CID   37782179.
  30. ↑ "Cancer Policy Institute Aims and Positions - Cancer Support Community".
  31. ↑ "Cancer Support Community - GuideStar Profile".
  32. ↑ "Charity Navigator - Rating for Cancer Support Community".
  33. ↑ "So That No One Faces Cancer Alone" (PDF). Cancersupportcommunity.org. Retrieved 2016-11-07.
  34. ↑ "National Cancer 2011 Top Nonprofit Ranking".
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