Chris Helfrich, RN, CDDN, is a certified developmental disabilities (DD) nurse who supports adults living in residential group homes throughout the state of Illinois. As a policy and procedure influencer and frontline educator, Helfrich works tirelessly to improve the delivery of person-centered care for individuals living with disability, including those at risk for or diagnosed with cancer.
Lauren Clark, RN, PhD, FAAN, is a professor and the Shapiro Family Endowed Chair in Developmental Disability Studies at the UCLA School of Nursing. Her work is drawing attention to the big picture of disability, which includes 54 million Americans, or 20% of the population, as well as those with developmental disabilities, intellectual disabilities, or both.1
In recent interviews with Oncology Nursing News
®, Helfrich and Clark discussed some of the healthcare barriers faced by persons with DD and offered practical advice for nurses on how they can help improve the care delivery for this demographic.
ONE STORY, MANY LESSONS
Helfrich has worked with individuals with DD for 20 years. “It was tough in the beginning,” she recalled. “I was the only healthcare professional in the agency. My job involved visiting 1 group home after another and tending to the medical needs of the adults living there. I had no idea what I was doing.”
Helfrich needed guidance. Her search led her to the Developmental Disabilities Nurses Association (DDNA). “Here was this wonderful network of nurses who all provided the same type of care. Resources were few and far between, so we kind of MacGyvered our way through situations and helped each other learn along the way.” Her position now is to hire, teach, and train nurses, in addition to lending assistance with complicated cases. Helfrich is quick to credit her success in the field to the attachment she has maintained with DDNA throughout the years.
When asked what’s it like for someone with DD (or their caregiver) to interact with the healthcare system, Helfrich had a personally meaningful story about a young woman at the ready. “She’s our biggest success, and her story is closest to my heart,” she began. “One day while helping this young woman shower, her caregiver noticed something different—a lump. Her caregiver didn’t know if the lump was a problem or not, but it was new, and anything new or different was supposed to be reported to the nurse. I happened to be the nurse.”
Helfrich explained that the young woman had cerebral palsy and quadriplegia, which affected her physically. Her muscles were contracted and stiff. She used a wheelchair and was unable to perform breast self-exams or notice something was wrong. She had no risk factors, no family history of breast cancer, and was not a candidate for routine screening. She was dependent, as are many individuals with DD, upon others—typically unlicensed, minimum-wage caregivers—for help with basic daily activities, such as dressing, grooming, and bathing.
The caregiver’s actions of recognizing something different and reporting the change to the nurse are commendable, but not common, according to Helfrich. Nurses may rely on caregivers being forthcoming when something is different or out of the ordinary, but she thinks that might be asking a lot. “However, when they do share things with us,” she stressed, “nurses and medical staff need to take it seriously. I could have easily brushed off the comment about the lump. I could have said it was nothing and ignored it—but thankfully, that was not the situation. We pursued it.”
With three barriers overcome —failure to recognize, report, and pursue—the next action was to schedule a mammogram. Although community hospitals may have wheelchairaccessible parking spots, ramps, and doors, most do not have equipment adaptable to patients with DD.3 The nearest place with wheelchairaccessible mammography equipment could be many miles and several hours away. In this case, overcoming the fourth barrier, failure to accommodate, required a 90-minute drive to a facility with equipment that fit.
“Nurses who work with persons with DD know we are dealing with a medical community that doesn’t know how to support them or meet their needs because of the specific challenges they may have,” Helfrich said. Research backs up this sentiment with data that shows adults with disability significantly under-utilize the healthcare system compared to adults without disability.2
Individually and as a group, persons with disability encounter more barriers to care, receive less care, and are given care of poorer quality.
The woman was diagnosed with cancer, and continued to face barriers with the healthcare system.
“Consent for treatment is another example of a barrier to care, especially for people who are cognitively intact but cannot communicate very well—like this young woman,” Helfrich recounted. She explained how frustrating it was trying to advocate on her behalf; she ran into pushback from surgeons who would accept nothing less than verbal consent. “This adult woman was her own guardian. She knew exactly what she signed up for (a double mastectomy), and what to expect. The surgeons refused to accept consent without a medical POA.” They were able to overcome barrier no. 5, failure to acknowledge and accept, and proceed with the lifesaving surgery. This story continues to serve as fuel for Helfrich. “I am committed to advocating for persons with DD to be treated as any other person would be treated.”
ONE MORE STORY, AND A PREVENTABLE LOSS
Clark’s passion for understanding the needs and experiences of persons with developmental disabilities is evident and inspiring. Although she has been in her position at the UCLA School of Nursing for less than a year, it seems a perfect fit. She is a treasure trove of information and believes that the more nurses know about developmental disability, the better prepared they will be to meet the needs of patients with DD.
“Developmental disability, by definition, occurs before the age of 22. It includes ADHD, learning disability, intellectual disability, autism spectrum disorder, Down syndrome, seizure disorder, cerebral palsy, spina bifida, fetal alcohol syndrome, hearing and vision impairment—it’s a big group of people,” Clark said. She added, “Some of those disabilities could happen before age 22 as a result of childhood cancer treatment—like hearing loss or intellectual disability. Or in reverse, persons with pre-existing developmental disabilities can also get cancer.”
Clark said it is important for nurses to understand that there are sets and subsets of disability and differences between them. The populations are distinct but overlapping and often confusing. Unlike DD, which occurs before age 22, intellectual disability happens before age 18. It is defined as impairment in intellectual functioning and adaptive behavior, which includes social and practical skills.3
When it comes to the experiences of individuals with DD in the healthcare system, Clark shared the story of a man in his late 40s who lived in a group home in England. He had complained that it hurt to urinate, which the doctor attributed to a UTI, and he was prescribed antibiotics to take. He finished the medication but continued to complain. The staff at the group home shrugged it off, saying he just loved attention. His complaints continued. On a return visit, his doctor diagnosed him with penile cancer. The tumor was the size of a small melon. Sadly, this young man died.
“Unfortunately,” Clark said, “what happened to him is so common it has a name: diagnostic overshadowing.” Diagnostic overshadowing happens when physical signs and symptoms are falsely attributed to the disability, rather than investigated as a new, perhaps serious problem.4 Clarke admitted, “Caregivers may be well-meaning when telling the person to hush up and stop bothering the nurse, but disregarding complaints, signs, or symptoms leads to detrimental outcomes.”
WHAT ONCOLOGY NURSES CAN DO
Clark encourages oncology nurses to give extra care and attention to persons with disabilities and offers these tips:
• Humanize oncology care, and get to know the person with a disability, such as their favorite pet, food, and movie.
• Listen: Enter their world and find out what gives their life value.
• Recognize your biases.
• Mark progress through treatment using visual aids.
• Make the person comfortable: Offer food, bathroom visits, a favorite blanket, or activities for self-soothing. Address unexpected sounds or a noisy environment.
• Suggest someone familiar remain in the room with the patient.
• Communicate without interruptions; use simple words, speak slowly, and do not shout. Pause to avoid word overload.
• Support decision-making.
Helfrich suggests that oncology nurses take a proactive approach with individuals with disabilities, such as:
• Obtain their medical history prior to the appointment.
• Ask about communication needs, behaviors, and mannerisms.
• Inquire about their responses to anxiety and fear.
• Find out what to expect and how to address the person. • Ask questions directly to the patient, not the caregiver.
• Talk to adults as adults.
• Ask for a passport of information. This is a growing trend.
Importantly, continue to ask to what extent nurses and other healthcare professionals can better the life of persons with developmental disability. Whereas for able-bodied individuals, quality of life might include longevity, time with family, and the ability to pass on wisdom, for persons with DD, such as the young woman who is surviving breast cancer, quality of life may be as simple and rich as being able to wake up and see friends.
- Havercamp SM, Scott HM. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disabil Health J. 2015;8(2):165-172. doi:10.1016/j.dhjo.2014.1002.
- Merten JW, Pomeranz JL, King JL, Moorhouse M, Wynn RD. Barriers to cancer screening for people with disabilities: a literature review. Disabil Health J. 2015;8(1):9-16. doi:10.1016/j.dhjo.2014.06.004.
- AAIDD website. Frequently asked questions on Intellectual Disability www.aaidd.org/intellectual-disability/definition/faqs-on-intellectual-disability. Accessed March 17, 2020.
- Blair J. Diagnostic overshadowing: see beyond the diagnosis. University of Hertfordshire Intellectual Disability and Health website. www.intellectualdisability.info/changing-values/diagnostic-overshadowing-see-beyond-the-diagnosis. Accessed March 18, 2020.