Empowering the Patient Through Education and Resources

BY AMANDA WARD, BSN RN

After a new diagnosis or hospital admission, patients and caregivers can often feel a wide range of emotions. Anxiety over new challenges at home or work due to their illness. Concern about their prognosis, new or future limitations, or financial and social strain due to demands of disease processes and treatment plans. Confusion about what exactly is going on with their health, how to take care of themselves, and how to navigate their life now.

The flurry of activity during an inpatient stay, and the compounding effect that illness or stress can have on one’s ability to learn and process new information, can make it difficult for patients and caregivers to absorb education in real time while actively admitted or sick. By providing multiple sources of education and resources to patients and caregivers while admitted, newly diagnosed with a medical problem, and in the weeks or months following these events, the case manager not only ensures they have the understanding of their disease process and medical treatments, but can also empower patients and caregivers to actively take a role in their own care management, engage with others in their community facing similar challenges, and use available resources to help with other struggles they may face in their lives.

But what kinds of education and resources should a case manager use? How can case managers decide what types of education or resources the patient may need or benefit from? How can a case manager be sure these are vetted, accessible for non-medical persons, and easy to understand and use?

When talking to patients, case managers should ask questions beyond the standard assessment that could help them understand their patient’s needs, challenges, and areas in which case management could help them. Consider the context of your interaction with your patient and what challenges they may be facing beyond what is medically obvious.

Helpful Questions to Ask:

• “Could you describe in your own words how your disease works and how you are being treated medically for this?”
• “What are your biggest stress factors right now? Are they just your health issues, or do you also have stress related to family, friends, financial issues, work issues, or other issues?”
• “Are there any challenges you face that keep you from being able to attend appointments, take your medication as prescribed, or follow your medical treatment plan?”
• “Do you have any barriers that affect your ability to learn? Like dyslexia, trouble reading, or other impairments?”
• “What do you think you need help with most right now?”

These kinds of questions help patients describe to their case managers areas in which they may need help, their ability to learn, understand, and follow their medical plan, and their commitment to participating in their own care. Case managers can use the information gathered from these questions to find supportive education and resources beyond the standard cut-and-dry printable handouts provided by their facility.

Providing written education from trusted sources that use patient-friendly terms and avoid heavy medical jargon is an essential part of a case manager’s role when a patient has a new diagnosis or recent illness. Trusted, evidence-based, and easy to read handouts can be found online depending on what your patient needs. MedlinePlus is a service of the National Library of Medicine that offers free, reliable education in many languages on many medical topics. The Merck Manual provides free online or printable education for patients that can help them understand their treatment options and diagnosis. For more specialized education, researching sources from the federal government or large professional membership organizations and nonprofit organizations like the American Academy of Pediatrics, the National Cancer Institute, or the American Heart Association can allow the case manager to find detailed and patient specific education that may have specific information the patient might need.

There are disease-based and treatment-specific resources from these types of large, vetted institutions and organizations that can provide different types of assistance, guidance, and support for patients that some case managers might not have considered before. For instance, Blood Cancer United (previously called the Leukemia and Lymphoma Society) not only has education and financial support available to patients but also has peer-to-peer support groups, seminars, and guided meditations that could help provide additional support to patients undergoing treatment for blood cancer. The Renal Support Network has online meetings to educate patients, a peer support hotline where patients can speak to someone who knows what it is like to be on dialysis, get listed for and undergo transplant, and manage kidney disease, as well as video presentations, a magazine, podcast, blog, health library, transplant dashboard to see national and local statistics, and online support groups.

There are some resources that provide searchable databases of resources for people depending on their location and needs beyond strictly medical-related issues. FindHelp.org is a national database that provides resources by zip code, including assistance related to financial needs, food, medical needs, transportation, work related needs, legal issues, and assistance, and more. The Patient Advocate Foundation has a National Financial Resource Directory, which includes a long list of available resources for patients, including financial assistance, lodging assistance, general financial resources, copay relief, and disease specific funds. The Healthcare Hospitality Network and Joe’s House offer searchable databases for free or discounted lodging for qualifying patients.

There are also resources for caregivers who may be facing their own challenges when caring for patients at home. The Caregiver Action Network has tips for caregiving, peer support, and more. CaringInfo.org can benefit both patients and caregivers with its information on advanced directives, palliative care, hospice care, Medicare and Medicaid, and more to ensure patients and caregivers understand their choices, know how to prepare and plan, and being present.

When researching education and resources to provide for the patient, case managers should avoid sources that are outdated, lack clinical or legal rigor, or promote subjective biases rather than evidence-based practices. Always consider the credibility, relevance, and context of each new source found. If a source is in doubt, try to find a more trusted resource for the patient.

Case managers provide crucial support for patients and caregivers during their journey through their own healthcare needs. By providing sources like these the case manager can improve their patient’s understanding of their diagnosis and treatment plans and empower them to utilize resources they may not have known were available for their individual needs.

References

American Academy of Pediatrics. (2023). Pediatric Patient Education. Aap.org. https://publications.aap.org/patiented?autologincheck=redirected

American Heart Association . (2023). American Heart Association . American Heart Association. https://www.heart.org/

Blood Cancer United. (2025). We are all about blood cancer | Blood Cancer United. Bloodcancerunited.org. https://bloodcancerunited.org/

Caregiver Action Network. (2026). Home. Caregiver Action Network. https://www.caregiveraction.org/

FindHelp. (2020). findhelp.org by findhelp – Search and Connect to Social Care. Findhelp.org. https://findhelp.org/

Healthcare Hospitality Network. (2024, November 5). Home. Healthcare Hospitality Network. https://www.hhnetwork.org/

Joe’s House. (2026). Joes House – a Lodging Guide for Cancer Patients. Www.joeshouse.org. https://www.joeshouse.org/

Merck & Co. (2018). Merck Manuals Consumer Version. Merck Manuals Consumer Version. https://www.merckmanuals.com/home

National Alliance for Care at Home. (2024). CaringInfo: Resources for serious illness and end-of-life care decision-making and caregiving. CaringInfo. https://www.caringinfo.org/

National Cancer Institute. (2019, February 28). Patient Education Publications. National Cancer Institute; Cancer.gov. https://www.cancer.gov/publications/patient-education

National Library of Medicine. (2025). MedlinePlus. Medlineplus.gov. https://medlineplus.gov/

Patient Advocate Foundation. (2019). National Financial Resource Directory. Patient Advocate Foundation. https://www.patientadvocate.org/explore-our-resources/national-financial-resource-directory/

Renal Support Network. (2017). Renal Support Network. Renal Support Network. https://www.rsnhope.org/

Amanda Ward, BSN, RN, is a transplant nurse case manager. Amanda specialized in hepatology and liver transplant for over 8 years as a transplant coordinator in Texas and Washington State. For the past 5 years she has been working as a nurse case manager specializing in solid organ and blood and marrow transplants, working with patients across the nation to provide support, education, and interdisciplinary coordination to improve outcomes for each patient.