It's amazing what nurses routinely accomplish in the course of a shift-providing care for too many patients with complex needs, documenting that care, working with outdated technologies, coordinating care with other departments-and doing all this day in and day out, 24-7. Most nurses I know strive to do their best to provide high-quality individualized care, and take pride in doing so. So it can be difficult for us to acknowledge when we fall short.
This month's original research article, "Interactions of People with Disabilities and Nursing Staff During Hospitalization," reports on a qualitative study by Suzanne C. Smeltzer and colleagues that sought to provide insight into how nurses and unlicensed assistive personnel (UAPs) fare in meeting the needs of people with disabilities who are hospitalized. The researchers conducted six focus groups at three sites, interviewing 35 men and women with diverse disabilities. Although the participants did cite some positive interactions with nurses and UAPs, these were rare. They reported largely negative experiences, many stemming from staff failures to ask how we can best help or to listen when patients tell us what works for them. Many participants said they were often treated "as if they knew nothing about their own disabilities, despite the fact that many of them had lived their entire lives with their disability." The study uncovered themes of poor communication, compromised care, staff's negative attitudes, and participants' fears about quality of care. These findings are consistent with earlier research on the experiences of people with disabilities in health care. It's disheartening, and I hope these findings serve as a wake-up call.
A companion piece, "Hard Lessons from a Long Hospital Stay," offers an account from a patient's viewpoint. One of the authors, Michael Ogg, an Oxford-educated physicist who is quadriplegic as a result of primary progressive multiple sclerosis (MS), lives independently in his own home. Although he spends most of his waking hours in a powered wheelchair, he needs the assistance of paid caregivers to help him out of bed in the morning and into bed at night (visit http://bit.ly/yKAyd8 for his recent article in Health Affairs on his usual daily routines). The other author, physician Lisa I. Iezzoni, also has MS and is Ogg's friend and advocate. Told in alternating voices, their story describes Ogg's frustrating journey through several institutions during a recent medical crisis. The recurrent themes of his four hospitalizations were the staff's inadequate understanding of Ogg's disability, how he managed basic activities, and what care was crucial to helping him maintain independence. He went from being mostly independent, shaving himself daily and traveling about in his wheelchair, to often being left unshaven, unfed, and stranded in bed, waiting hours for help in transferring to a wheelchair.
How could this have happened, not once but repeatedly over the course of several hospitalizations? One factor may be that most nurses and UAPs have insufficient education and experience in providing care to people with disabilities. Smeltzer and colleagues cite one study of 500 nurses in which 60% reported having little or no education about or experience with people with developmental disabilities-yet 87% had encountered such patients. According to the National Center for Health Statistics, during the years 2001 to 2005, over 62 million U.S. adults were living with some form of disability, making it highly likely that at some point, most nurses will find themselves providing care to this population. And as the U.S. population ages, the number of people living with disabilities will surely increase.
There's a clear imperative for nursing schools and institutions to provide better education and training to students, nurses, and UAPs, and to conduct research to evaluate its effects, if we are to meet the needs of this population. Those of us currently practicing also need to be willing to take a hard look at where we might fall short, and find ways to acquire the education and experience needed. Above all, we need to respect our patients' extensive expertise in living with disability, and listen to what they tell us. Anything less risks the independence they have worked so hard to achieve.