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Lack of Nursing Research in the Field of IDD

Early in my career as a nurse in the field of intellectual and developmental disabilities, the lack of research and available evidence-based practice (EBP) in the field of IDD became apparent. As the first registered nurse in my agency and with no background in IDD, I searched the literature for evidence-based interventions but was discouraged by the shortage of available research. The scarcity of EBP is what drove my passion to advocate for, conduct and seek out opportunities for research in the field of IDD.

The Lack of and Need for Nursing Research

Reports show that IDD nurses design and implement less research than nurses in other areas of practice. There may be several reasons for this, including lack of visibility of IDD nursing within the larger scope of nursing, minimal grant opportunities to fund research, difficulty of nursing caseloads, and lack of IDD nurse researchers to conduct this type of work. Even when IDD nurses undertake research projects, the results often are not published or made widely available to other IDD nurses or other healthcare providers. Together, these factors create a void in needed research.

Nursing interventions derived from research are known as evidence-based practice. EBP is how we apply relevant research to nursing care. Nurses use EBP, along with their own expertise and patient preferences and values, to develop a plan of care.

Impact on Care for Persons With IDD

EBP pairs well with IDD nursing practice as IDD nurses often develop long-term and close relationships with the people they support. These relationships allow the IDD nurse to understand the desires of the person with IDD and to develop a plan of care that respects those desires.

Evidence-based practice is vital to quality care. Without EBP interventions to guide care, IDD nurses lack a reliable framework for their nursing practice. The lack of a reliable framework may lead to IDD nurses developing a “we have always done it this way” mindset, thus stifling innovation and leading to lower-quality outcomes for persons with IDD. Without EBP interventions, persons with IDD do not receive optimal care. Using EBP grounded in research produces better healthcare outcomes for individuals with IDD.

What is Needed

Agency administration should embrace their IDD nurses’ autonomy to improve practice through research and use of EBP. Offering financial support by securing grants and including EBP finances in their annual budgets would help. Agency administration also should ask their nurses what they see as the perceived barriers to conducting research and using EBP. Is it a lack of knowledge, difficult caseloads, a shortage of time or a nonsupportive organizational culture? Then agencies can assist in removing those barriers.

Most importantly, IDD nurses can foster a culture of clinical curiosity grounded in research. We should establish principles of improvement and learning about IDD clinical practice. EBP fits well into the design of IDD nursing—a social aspect of our practice is to help secure the autonomy and desires of each person, and EBP honors peoples’ preferences and ideals.

Lastly, we as IDD nurses should value knowledge from research as much as we value practical knowledge from doing. The use of research and EBP leads to the best “doing” for the people entrusted to our care. IDD nurses are keenly positioned to identify healthcare needs of persons with IDD, conduct research, and trial interventions aimed at improving their healthcare. Let’s get busy!


Person-Centered Health Care for People with IDD

Many healthcare clinicians working with people with IDD follow the medical model of care, which views disability as a "deviation from normal," while most provides take a person-centered approach. Often, it is nurses who most navigate both approaches to provide quality, respectful healthcare.

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