Communicating Support in the Non-Profit Sector

Communicating Support in the Non-Profit Sector: Examining Support Given to Those with Chronic Illness Brianna Westlake Vanessa Sanchez

Communicating Support in the Non-Profit Sector

Through experience in the field of Communication, the need to examine cultural communication is clear. Without a solid understanding of how subcultures in our own country function, it is more difficult to grasp international cultures. For our study we will explore the world of private sector organizations, or nonprofit organizations in the United States. A nonprofit organization is a business venture where any and all surplus money, beyond reasonable operating expenses, will be spent to provide services and programs, typically for education, social causes, the arts and scientific research (Bryson, 1995). Within the United States and other countries, the issue of disease is a rapidly expanding study. Those who suffer from different diseases reach out to organizations for direction, while large organizations are profiting through their philanthropies. How does our language affect the outcome of the patient? How do constituents receive the message that organizations are sending? Some evidence has suggested that there is a decline in trust in the nonprofit organizations in the United States while other research disagrees with this. The research question we intend to investigate is how do nonprofit organizations in the United States communicate support to patients suffering from chronic or life threatening illness? The research question will be broken into sections to understand the definition of support from nonprofit organizations. The first portion will be how nonprofits which address health financially support patients. How much of the money these groups raise go directly toward patient programs or research? For this section, we want to identify how much money is spent operating support groups, childrens camps, or individual grants for medical expenses. The second portion will address where the organizations operate as a support system for patients. This will include an examination of the cultures where these nonprofits are more

Communicating Support in the Non-Profit Sector

prominent. Are more of these locations found in urban areas? We will answer these types of geographical questions. In addition, we will locate where specifically these organizations support patients. Are they found in institutions? Are they found in individuals homes? The third and final section of our study of nonprofit organization communication is examining how the ideology of support is expressed from these established organizations. In order to do this, we will seek beneficiaries of support from organizations intended to raise awareness and funds for particular diseases. Among these organizations will be the Crohns and Colitis Foundation of America, Susan G. Komen, and the Alzheimer's Association. These three organizations which fund and support very different diseases. Using a critical eye, we can determine the intentions of the organizations. A theory exists that denies the hope of a cure for these organizations because that would put them out of business. Where does this theory apply? Methods: Many donors do not examine where their money goes when they make a

donation. They believe in the mission statement and therefore may not look any farther. The following are the total contributions vs. program expenses, or amount of money spent directly on patient support or programs. Organization The Crohns and Colitis Foundation Susan G. Komen Alzheimers Association www.charitynavigator.com Total Contributions $45,192,467 $357,832,083 $235,714,937 Amount Spent on Patient Programs $38,236,919 $257,449,408 $159,999,113 % Spent on Patient Programs 84.6% 71.9% 67.8%

Communicating Support in the Non-Profit Sector

The mission of the Crohn's & Colitis Foundation of America (CCFA) is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. The foundation does this by encouraging education and patient programs. In addition to programs, a primary focus is on disease awareness. Multiple Sclerosis is a disease that affects 1 in 500 individuals. Crohns and Colitis affect 1 in 200. Yet the community as a whole has a better understanding of MS than they do of Crohns and Colitis. The Crohns and Colitis Foundation - Rocky Mountain Chapter serves the areas of Colorado, Utah, and Wyoming. The single office that manages major programming in these three states is located in Denver. As a result, the executive director Kris Walker stated We dont know whats going on, or even what the biggest newspaper is in Glenwood springs. In this regard, patient services are more widely available to those living in the Suburbs surrounding Denver. A service that CCFA offers to its constituents is Camp Oasis. It is an all cost paid camp for children suffering from the diseases. A major part of the funding CCFA receives goes to these campers. Part of the cost involved with nonprofit organizations is patient programs. A new program being established by the Crohns and Colitis Foundation is called The Power of 2. Though it has been implemented by other chapters, it is brand new to the Rocky Mountain region. The program will allow staff to create a database of trained peer supporters. These are people of different age groups with Crohns disease or Ulcerative Colitis. When a patient is diagnosed, the gastroenterologist will be provided with a list of peer mentors. These peers will share their contact information with the patient and therefore allow the patient to contact them if and when they are in need of support. This new program acknowledges the change

Communicating Support in the Non-Profit Sector

from a provider/taker relationship to a community feeling. Instead of taking from the organization, these people are provided a valuable opportunity to give back. Patient programming is an essential part of communicating support to patient constituents. In fact, both interviewees of the Crohns and Colitis Foundation said they wish that the foundation would increase their patient programing. Fundraising plays a significant role in reaching the organizations communication goals. Often times they enlist the help of famous individuals, including Mike McCready of Pearl Jam and David Garrard, Pro Quarterback. Garrard and McCready both suffer from Crohns disease. In 2009, Garrard paired with Centocor Ortho Biotech, a pharmaceutical company. For each touchdown Garrard made, the company donated $10,000 to the CCFA. In addition to utilizing famous faces, CCFA has two other strong fundraising campaigns including Team Challenge and Take Steps. The Susan G. Komen foundation is considered a fundraising giant. They are a highly accessible organization and one fortunate to have secured a very popular color to advertise their products. Their mission statement is The mission of the Susan G. Komen Breast Cancer Foundation is to eradicate breast cancer as a life-threatening disease by advancing research, education, screening, and treatment. They are self-described as a vibrant, grass roots advocacy group with more than 100 affiliates across the United States. This number has grown since the publication of this article in 1998. The organization was created by the sister of Susan G. Komen who lost her battle with breast cancer in 1980. With major fundraising campaigns like Race for the Cure the organization has certainly established its grass roots in contemporary society. Their easy to navigate web page creates an educational environment for everyone who visits. With clear direction, those who were

Communicating Support in the Non-Profit Sector

recently diagnosed, family of the recently diagnosed, and individuals who want more information on the disease all have their own sections of the site. As an observer, the best resource I saw were discussion boards located directly on their webpage. This is a feature that other organizations lack. This promotes community and psychological support to those who may live in a rural area with little access to the organization. Susan G. Komen has also established a database of co-survivors that doctors may reference newly diagnosed patients to. This program is very similar to the Power of 2 program at the Crohns and Colitis Foundation. It allows newly diagnosed patients to receive the support they need from a peer, someone who is not a medical doctor, or a sympathetic family or friend. The rhetoric of co-survivor is also important to the study of communicating support. The Susan G. Komen foundation does an excellent job of acknowledging the disease as a community. The Alzheimers Associations mission statement is To eliminate Alzheimers disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Though a lengthy mission statement, I believe it addresses the true desires of the organization better than Susan G. Komen or the Crohns and Colitis Foundation. An important Service provided for people with the disease by the Alzheimer's Association is a free service that matches individuals with clinical trials based on personal criteria (diagnosis, stage of disease) and location. More than 100 research studies pertaining to Alzheimer's disease and related dementias are underway and recruiting volunteers. Alzheimer's Association TrialMatch lets people search these trials quickly and easily. It also narrows results to those trials where there is a reasonable chance to be accepted for enrollment. This saves

Communicating Support in the Non-Profit Sector

time for both the person with the disease and the researcher. Enrolling the right participants helps researchers accurately measure the effect of a treatment. There are four basic steps to start using the source: Access the TrialMatch tool at the top of this page or call our toll-free number, 1-800-272-3900, 7 a.m.-8:30 p.m. CT, MondayFriday. Complete a brief questionnaire about your diagnosis and current Step 2 treatments, either online or over the phone, to create a profile for the potential clinical trial participant. Based on the specified eligibility criteria (i.e., diagnosis, treatment Step 3 history, location), the Alzheimer's Association will compare your unique profile to its comprehensive, up-to-date clinical trial database. With your permission, an Alzheimer's Association Contact Center specialist will contact you to provide unbiased trial result options and Step 4 trial site contact information. Specialists will not recommend any particular trial, but will help you identify trials that match your specific eligibility criteria. Step 1

Another article we located highlighted the abilities of those with dementia in a way the other organizations lacked. The article is on the Memories in the Making, an art program for people with Alzheimer's disease and related forms of dementia, at Oak Hollow Alzheimer Special Care Center in Bedford, Texas. The program, which was introduced by the North Central Texas Chapter of the Alzheimer's Association, is being offered in many facilities across Tarrant County. Theresa Hocker, executive director of the Alzheimer's Association's North Central Texas Chapter, says they hope that the program will extend the quality of life for people with Alzheimer's disease. Interviews: Though we have compiled the physical data on the Crohns and Colitis

Foundation, the Susan G. Komen Foundation, and the Alzheimers Association, it is important to reflect on the actual impact of the organizations on an individual level. To answer our research question, we must speak directly with those receiving support from the nonprofit organizations

Communicating Support in the Non-Profit Sector

we are studying. The questions differ slightly for each organization. The first interview will be conducted with a parent of a child with Ulcerative Colitis, as well as an unrelated adult patient with Ulcerative Colitis. The second interview will be conducted with a patient diagnosed with Breast Cancer who has received support from the Susan G. Komen foundation in some way, be it financial, educational, or emotional. The third interview will be conducted with the daughter of a woman who suffers from Alzheimers disease. The nature of this disease is naturally more sensitive, and therefore a patient with Alzheimers will likely not be appropriate for this study. Interview #1 (Mother of UC Patient) See Appendix A. Interview #2- Breast Cancer Patient Susan G. Komen Foundation See Appendix B. Interview #3- Daughter of Alzheimers patient Alzheimers Association See Appendix C. No one who was involved with these organizations felt that more could be done to improve their overall feelings regarding the organization. In fact, interview #1 and interview #3 said that the organizations had gone above their expectations in the services that were offered to them as a result of their diseases. None of the three women interviewed felt distrust for the organizations that had given them support. For interview 1, support came in the form of a free week long camp for her daughter. They have also awarded her daughter the position of Honored Hero for the Team Challenge team twice, providing travel accommodations for her to be at the race in Las Vegas in 2011. She and daughter received support from the Crohns and Colitis Foundation through life improvement grants rather than direct medical expense grants. Interview #2 has experienced different emotions being supported by the Susan G. Komen foundation. She is in her late seventies and currently lives in assisted living. She was first diagnosed with breast cancer in 2005. It was then she received a large packet in the mail full of

Communicating Support in the Non-Profit Sector

patient support services provided by Susan G. Komen and a small pink bear wearing an even smaller pink logo. This packet gave her access to the online message boards that she frequently uses. The bear still sits next to her bedside, and she keeps it there to remind her not to give up, there are other people who care deeply about her. Interview #3s experience with the Alzheimers Association has been relatively recent. She first researched their programs in 2010. The program that she has been the most thankful for is the Memories in the Making art program. She is a trained artist herself, though her mother always denied the purpose of creative and artistic abilities. Now, a volunteer works with her mother once a month to create paintings. Several times per year professional artists select works of art created in the Memories in the Making program to frame and auction as a fundraiser for the Alzheimers Association. For her, this program has bridged the gap between her passion and her mothers disease. After comparing responses from all questions answered by survey participants, it was obvious that all three women felt highly of their prospective organizations. Frequently we hear messages that organizations financially support their patients, however this was not the case in any of the three interviews. No one had received any grant or funding for their extensive medical bills that all three had incurred. Though this fact was apparent to us, they were just pleased to have a community in which they could belong and feel like progress was being made in the fields of Crohns and Colitis, breast cancer, and Alzheimers research.

Literature Review:

Expanding the idea of perception beyond our three interviewees, we

discovered mixed messages in the ideology of community acceptance. According to the FBI, over 4,000 Katrina Victim Fund websites popped up after the hurricane, many of them were

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fraudulent (Hall, 2005). Upon a literature review of a piece titled Public Confidence in Charitable Nonprofits found in the Nonprofit and Volunteer Sector Quarterly, data was presented which showed correlations between time and faith in nonprofit organizations. Though many of their sources doubted the reliability of modern nonprofit organizations, their data presented a different finding (ONeall, 2009). In our own research, we are attempting to discover how nonprofits communicate support. It would be necessary for constituents to be accepting of this support in order to benefit from the organizations. According to the researches conducting the piece on confidence in charitable nonprofits, there is no data trend suggesting that people in the United States were losing confidence in their charitable organizations, but rather, lacked a general knowledge of the purpose of many of these organizations. Summary: Within the Crohns and Colitis Foundation, the Susan G. Komen Foundation, and

the Alzheimers Association, a common denominator can be found. That is that each has a specific community to serve. With so many valuable and important organizations, people make choices on who to support based upon their own life experiences. With the rhetoric each organization uses, they establish a tone that communicates support. By identifying a needy party, and highlighting what the organization has to give this needy party, they establish a hierarchy. Language like survivor, victim, battle create a communication climate of struggle. The Alzheimers Association has established a peer program that allows well seniors to care for those with dementia. This type of program is also being established by the other two organizations in different formats. This new movement is breaking down the communication in nonprofit health organizations from a parental notion of support to peer support.

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Conclusion:

Overall, these three organizations have implemented important programs for

the communities they serve. The Crohns and Colitis Foundation of America, the Susan G. Komen Foundation, and the Alzheimers association communicate support through substantial funding of research and patient education programs, as well as communicating support through programs which allow constituents to feel they are a part of a community. Marginalized communities like those with chronic and terminal illness lack a connection to the rest of the world, and the foundations we studied bridge the gap between illness and life, struggle and productivity. In the future it will be necessary to reflect upon the public opinion of nonprofit organizations. These studies should be conducted by third party groups not affiliated with a political, business, or social interest. Though the study we examined showed that support has not dwindled, it will be important to fulfill a need in the community and be perceived as a worthwhile cause in order to maintain quality patient programs.

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Appendix A. 1. How did you first discover the Crohns and Colitis Foundation? 2. Describe your first interaction with a staff member of the organization. 3. Has the Crohns and Colitis Foundation assisted you financially? Please provide details. 4. Has the Crohns and Colitis Foundation provided information that may have had an outcome on disease treatment? i.e. an article on a new type of medical intervention that you pursued. 5. Have you ever had an experience that led to poor feelings about the Crohns and Colitis Foundation? 6. What services do you utilize that are organized by the Crohns and Colitis Foundation? 7. What would you change about the organization or the services they offer? 8. Overall, do you feel confident that the organization is adhering to the principles highlighted in their mission statement? Appendix B 1. How were you first introduced to the Susan G. Komen Foundation? 2. Describe your first interaction with a staff member of the organization. 3. Has the Susan G. Komen Foundation assisted you financially? 4. Has the Susan G. Komen Foundation provided information that may have had an outcome on disease treatment? i.e. an article on a new type of medical intervention that you pursued. 5. Have you ever had an experience that led to poor feelings about the Susan G. Komen Foundation? 6. What services do you utilize that are organized by the foundation? 7. What would you change about the organization or the services they offer? 8. Overall, do you feel confident that the organization is adhering to their mission? 9. Are you aware of any controversy within your organization? If so, please describe how this controversy affects your perception of the organization.

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Appendix C 1. How did you first discover the Alzheimers Association ? 2. Describe your first interaction with a staff member of the organization. 3. Has the Alzheimers Association assisted you financially? Please provide details. 4. Has the Alzheimers Association provided information that may have had an outcome on disease treatment? i.e. an article on a new type of medical intervention that you pursued. 5. Have you ever had an experience that led to poor feelings about the Association? 6. What services do you utilize that are organized by the Alzheimers Association? 7. What would you change about the organization or the services they offer? 8. Overall, do you feel confident that the organization is adhering to the principles highlighted in their mission statement?

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References Brinker, N. G. (2005). When society meets science. Nature Medicine, 11(10), 1040-1042. doi:10.1038/nm1005-1040 Brinker, N., & Braun, S. (1998). The Susan G. Komen Breast Cancer Foundation. Breast Disease, 10(5/6), 23 Bruce, J. (1993). Creating more dynamic senior companion programs. Aging, (365), 36 alz.org about alzheimer's association trialmatch. (n.d.). Retrieved from http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp Bryson, J. M. (1995). Strategic Planning for Public and Nonprofit Organizations : A Guide to Strengthening and Sustaining Organizational Achievement. Jossey-Bass Publishers. Dillard, B. (2009). Art program helps people with Alzheimer's tell their stories. Fort Worth Business Press, 24(35), 10. Hall, H. (2005). After the Hurricane, Online Charity Scams Grow in Number and Sophistication. Chronicle Of Philanthropy, 17(24), 12. Hoffman, M. K. (2009). Pro Quarterback Scores Big For Crohn's Disease. Jet, 116(19), 34 O'Neill, M. (2009). Public Confidence in Charitable Nonprofits. Nonprofit & Voluntary Sector Quarterly, 38(2), 237-269.