Patients Face Stigma and Emotional Challenges - Nurses Lack Adequate Support Due to Lack of Time and Resources
About This Article
Health care faces challenges, especially in dealing with individuals with long-term health problems. Research indicates there are physical, emotional, and social challenges faced by those with long-term health conditions.
James Kelly
LTC News staff writer specializing in long-term care and aging.
You or someone you love may be living with a chronic illness, a wound, or another long-term health challenge. If so, new research suggests the emotional weight of that experience — including shame and stigma — may be making physical healing harder.
A national survey conducted by Wakefield Research and sponsored by Convatec found that nearly all patients and caregivers surveyed — 99 percent — said stigma could negatively impact or slow perceived healing. And the nurses caring for these patients largely agree.
Stigma Can Affect Healing
The survey included responses from 200 patients or their caregivers and 200 nurses in the United States. Eighty-seven percent of respondents said they felt some degree of stigma associated with their health condition or the condition of the person in their care. Many said they felt too embarrassed to talk openly about their health challenges — 44 percent said so directly, and 43 percent noted that their condition is rarely discussed publicly or represented in the media.
Nurses confirmed the impact. Ninety-six percent of nurses surveyed agreed that a patient's physical healing can be affected by stigma.
Long-term health conditions covered in the survey included living with a stoma or wound, managing diabetes, urinary retention and cancer, among others. While clinical training has traditionally focused on older adults, nurses are increasingly seeing younger patients present with chronic, long-term conditions.
These survey results demonstrate why emotional and mental health is a societal health priority today. We need to do more, as an industry, to help prevent stigma among these patients – by showcasing stories and experiences of how our patients live confidently, by providing peer-to-peer support, and by making conversations easier between friends, family and care teams." — Karim Bitar, the CEO of Convatec.
Convatec is a global medical products and technologies company that focuses on solutions for the management of chronic conditions.
Nurses Need More Time and Resources
The survey found that more than 2 in 3 nurses — 68 percent — felt unable to fully support their patients. Nearly all, 96 percent, said they need more time, resources and education to care for patients effectively.
Specifically:
- 71 percent of nurses said they need more time to spend with patients
- 56 percent said they need more time for learning and continuing education
- 51 percent said they currently lack the resources needed to share directly with patients
Most nurses — 82 percent — said they feel completely or mostly comfortable discussing health challenges with patients. However, 60 percent said they are less than completely comfortable. Among those who are not fully comfortable, 47 percent attributed it to a lack of quality time with patients.
The Financial Reality of Long-Term Care
There is a significant financial dimension to long-term care that families often underestimate — and that the stigma around aging and dependency can make even harder to confront. Medicaid is the largest payer of long-term care services in the United States, but eligibility requires that a person have little or no income or assets. Because it is a government program, reimbursement rates to care providers are low, and quality of care can suffer as a result.
Medicare — including supplement plans — covers very little long-term care. Long-Term Care Insurance provides meaningful financial protection, but many people fail to put a policy in place before they need it. When a plan is not in place, the responsibility falls to unprepared family caregivers or is paid directly out of personal savings.
The cost of care is rising sharply across all settings, driven by growing demand, labor shortages and higher wages. Costs vary significantly by region. You can explore current rates in your area using the LTC News Cost of Care Calculator.
The best time to obtain Long-Term Care Insurance is typically when you are in your 40s or 50s, before health issues arise. LTC Insurance is medically underwritten, meaning that a serious pre-existing condition can make coverage unavailable at any price. Waiting too long eliminates the option for many people.
"(The pandemic) is the greatest financial threat in history for hospitals and health systems and is a serious obstacle to keeping the doors open," said Rick Pollack, president and CEO of the American Hospital Association.
Long-term care largely sits outside the broader health care system. It remains primarily the financial responsibility of individuals and families — with Medicaid as the safety net for those who have spent down their assets, and Long-Term Care Insurance as the planning tool for those who act in time.
Frequently Asked Questions: Stigma, Chronic Illness and Long-Term Care Planning
Can stigma really affect physical healing?
Yes. The survey found that 99 percent of patients, caregivers and nurses believed stigma can negatively impact or slow healing. Feelings of embarrassment, isolation or shame may discourage people from seeking help, discussing symptoms or fully engaging in their care.
Why do people feel stigma about chronic health conditions?
Many chronic conditions remain poorly understood or rarely discussed publicly. Survey respondents reported feeling embarrassed about their condition, while others said their health challenges are not well represented in media or everyday conversations.
What types of health conditions were included in the survey?
The survey included people living with or caring for someone with conditions such as wounds, stomas, diabetes, urinary retention and cancer, along with other long-term health challenges.
Do nurses believe stigma affects patient outcomes?
Yes. Nearly all nurses surveyed agreed that stigma can influence physical healing. Nurses often see how emotional well-being, confidence and social support can affect a person's ability to manage a chronic condition.
Why do nurses say they need more support?
Many nurses reported not having enough time, educational opportunities or patient resources. More than two-thirds said they cannot fully support patients as they would like because of these limitations.