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Non-profits stepping up:
Stories of continued support amidst rapid organizational change
By Scott Burg
The COVID-19 pandemic has altered our lives in ways that were unimaginable just a short time ago. In the blink of an eye, many of us are sheltered in place, away from family, friends, and experiences that never felt at all life threatening, or at risk of being expunged from our day-day existence. We have had to alter our habits and daily rhythms to adjust to the new normal for however long that may be.
The pandemic has also forced organizations and institutions that support our educational, health, information and cultural needs to reassess how they do their work. Leaders are rapidly tackling how they can continue to support and maintain connections with their audiences they serve, and, very bottom line, how they will continue to stay in business. As stated in a recent New York Times article, ‘Most institutions are familiar with what happens if a storm or strike interrupts their operations, but a viral epidemic is new territory.’
As a qualitative evaluator I work with a variety of non-profit organizations including schools, museums, patient support groups and public media to assess the impact of their programs on diverse audiences across the country. In conversations program staff over the past month, I’ve discovered that rather than capitulate to external forces, these same organizations, many of whom are extremely under-resourced and understaffed, are pivoting to address the new reality. What we’re seeing in organizations large and small, is a rejection of the old playbook of how things are done, and the emergence of a level of experimentation, reinvention, and disruption unheard of in recent memory.
- CancerCare: Supporting the unique needs of cancer patients
- KQED: Changing the practices of disaster reporting
- PBS Education and SFJAZZ: Leveraging technology to provide education and instruction to students at a distance
This is the first in a series of short articles on how non-profit organizations across different sectors are leveraging institutional knowledge and experience to meet new and challenging demands both externally and internally.
Supporting the needs of cancer patients
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CancerCare, Inc. is a 76-year old nonprofit organization dedicated to helping people handle the crisis of cancer. CancerCare’s comprehensive services include psychosocial support over the phone, online and in-person; educational workshops and publications; and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts.
In 2017, a series of devastating hurricanes wreaked havoc across the southern US and Puerto Rico. Major storms or natural disasters can have extremely negative impacts on patient access to critical care. Patients with illnesses such as cardiovascular disease, diabetes, respiratory conditions, and cancer are some of the most vulnerable groups after natural disasters. Despite the increasing frequency of these events, there are currently limited best practices for preserving patient access to care during a natural disaster.
Cancer patients are especially susceptible to the disruptions that natural disasters can cause. Lapses in treatment can have an effect on treatment outcomes. Damage to infrastructure, communication systems, lack of access to medication, and medical record losses substantially disrupt oncology care.
In responding to the need of these cancer patients during the natural disasters of 2017, CancerCare staff provided critical financial assistance, transportation aid, and mental health support to thousands of cancer patients across stricken regions of Puerto Rico, Florida, and Texas. In our evaluation of CancerCare activities during this period we concluded that CancerCare’s staff demonstrated agility, commitment, creative problem solving, and an ability to facilitate logistics with multiple public and private organizations in oncology and patient care. Cancer patients responding to an online survey we administered to those receiving support indicated that they were extremely pleased and grateful for financial aid and other assistance provided by CancerCare during and after hurricanes impacted their regions.
Acknowledging that no one agency has the resources to adequately carry out these activities, in May 2018, CancerCare convened a group of 18 premier oncology and other organizations involved in disaster response to create a coalition that addresses the many challenges that cancer patients and providers face in preparing for and responding to natural disasters. At that time, the coalition determined that their focus of support would rest with addressing natural disasters such as hurricanes, earthquakes, and wildfires. They have since redefined the guidelines to include epidemics and pandemics.
Fast forward to 2020, and a new kind of disaster confronting cancer patients has appeared. In addition to facing dilemmas similar to those experienced in natural disasters, cancer patients across the entire country are having to balance their need for treatment with the risk that they could contract the novel coronavirus, the highly contagious respiratory virus that causes the COVID-19 disease. To free up valuable medical resources or to avoid having cancer patients being exposed to COVID-19, many cancer facilities are being forced to conduct certain patient visits by telemedicine and even delay certain cancer treatments such as surgeries.
Patients whose treatments cannot be delayed and need to come into the hospital or outpatient cancer practice must abide by new rules around social distancing. That can be an added stressor as cancer patients typically have support from friends and family during their treatments, such as chemotherapy sessions.
Informed by their experiences in providing support to cancer patients during the hurricanes of 2017, and the wildfires of 2019, CancerCare and their partners are marshaling even more resources to confront this very new and dangerous disaster. In early 2020 CancerCare launched a fund to support cancer patients in active treatment impacted by COVID-19. Types of support include food, medication, transportation, homecare, and child care, depending upon the grantors’ requirements.
While many types of support that CancerCare has provided to cancer patients during natural disasters apply here (financial aid, etc.), there are concerns and issues unique to the pandemic that the organization must learn to address. As CancerCare’s masters-prepared oncology social workers speak to more and more individuals, every patient story brings a new piece of knowledge to help provide support and expand the organization’s base of understanding.
As a result, both social workers and the cancer patients they support have had to become knowledgeable about different issues impacting care and treatment options in environments where patients are sheltered-in-place, are experiencing reduced access to physicians and medical facilities, have limited public and private transportation options, and are practicing social distancing, all designed to limit the possibility of infection to themselves and others.
The range of stories reflect the new kinds of challenges that cancer patients are facing:
- Rising unemployment has forced many patients to choose between food, rent, and continuing treatments. Many were previously working while undergoing treatment but have lost their jobs.
- Patients are experiencing stress navigating changing treatments to oral chemotherapy or spreading out treatments further. They are unsure what to do.
- Patients feel isolated and anxious because they cannot be around family, friends or caregivers. This is leading to greater levels of mental stress.
- Patients are unable to afford online access for virtual appointments (oncologists are not seeing patients in person at some treatment centers).
In fact, some of CancerCare’s New York City-based staff have reported that they feel the COVID-19 pandemic is more stressful for cancer patients than 9/11 was.
To disseminate information support more broadly, CancerCare has produced a series of educational webinars with experts in oncology, public health and patient support to provide guidance for people living with cancer. Topics include methods of protection against COVID-19, follow-up care and quality of life concerns, advanced directives, and tips for managing the practical, emotional and financial stresses.
According to one CancerCare staff member, the magnitude of the pandemic is forcing people to take being prepared for this, and other kinds of disasters, much more seriously. Because so many individuals across the country and across the world are being impacted, the hope is that there may be some small silver lining to COVID-19: the recognition of the need for cancer patients and providers to be ready for any eventuality. The larger story is gaining more traction.