The Journal of Continuing Education in Nursing

Original Article 

Intellectual Disabilities and Health Care Communication: A Continuing Education Program for Providers

Marlena Seibert Primeau, DNP, RN, FNP-BC, NHDP-BC, BSHECS; Brenda Talley, PhD, RN, NEA-BC

Abstract

Communication with others is a core human imperative; this is especially true in health care. Individuals with intellectual disabilities often face daunting challenges in both health literacy and communicating their health needs and questions. Education for professionals in specialized communication is critical in improving care for their clients with intellectual disabilities. To address this issue, an educational framework, ID-COMMUNICATE, was created to guide improved interactions between health care providers and clients with intellectual disabilities and was further developed into a continuing education program. The modules of the ID-COMMUNICATE program focus on specialized communication techniques and strategies and related professional practice issues. This program can be disseminated in a variety of ways and is easily adapted for professionals in many disciplines. [J Contin Educ Nurs. 2019;50(1):20–25.]

Abstract

Communication with others is a core human imperative; this is especially true in health care. Individuals with intellectual disabilities often face daunting challenges in both health literacy and communicating their health needs and questions. Education for professionals in specialized communication is critical in improving care for their clients with intellectual disabilities. To address this issue, an educational framework, ID-COMMUNICATE, was created to guide improved interactions between health care providers and clients with intellectual disabilities and was further developed into a continuing education program. The modules of the ID-COMMUNICATE program focus on specialized communication techniques and strategies and related professional practice issues. This program can be disseminated in a variety of ways and is easily adapted for professionals in many disciplines. [J Contin Educ Nurs. 2019;50(1):20–25.]

Communication with others is a core human imperative; the capacity to transmit thoughts, ideas, and knowledge is vital for successful interactions and relationships. This is especially true in the realm of health care, where one's ability to convey and understand information can be—literally—a life-or-death concern. Communication is especially critical for individuals with disabilities and other special needs, particularly those with an intellectual disability. That communication may pose challenges does not relieve the health care provider from the obligation of involving each individual in his or her own care and in decision making to the fullest capacity.

The ID-COMMUNICATE model was developed to provide a flexible educational model for nurses and other health care professionals on specialized communication techniques that are useful with adult patients who have communication, literacy, or cognitive issues. This article describes how the authors used the ID-COMMUNICATE educational framework to create a continuing education (CE) program, including curriculum and supporting materials, to facilitate more successful interactions between health care providers and their patients. The model is multifaceted, incorporating 10 components derived from the literature, and is directly related to the communication experience (Primeau, 2012).

Background and Significance

Individuals with intellectual disabilities are those who, to some degree or other, have a cognitive capability that is below that of their typical peers. They also are challenged with lifelong impairments in activities of daily living and with myriad comorbid problems, including communication difficulties, which increases overall health care costs. Worldwide, the prevalence of intellectual disability is believed to be 103.7 per 1,000 individuals (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011). Estimates of the prevalence of intellectual disabilities range widely, often due to differing definitions of intellectual disability. Estimates for the United States are between 8.7 and 36.8 per 1,000 children (Boat & Wu, 2015; Centers for Disease Control and Prevention, 2015). Medicaid expenditures in 2014 reveal that 75% of national Medicaid spending was spent on home and community waivers for long-term services and supports (Eiken, Sredl, Burwell, & Saucier, 2016). In the 2009 Medicaid population, 4.9% of recipients had intellectual disabilities, yet they accounted for 15.7% of total Medicaid expenditures (U.S. Department of Health and Human Services, 2014).

Effective health communication and teaching are core elements of the standards of care for health care professionals, including nurses at all levels (American Nurses Association, 2015). Challenging or ineffective communication in any of its forms is one of the most common barriers to successful health communication and health teaching, especially between patients with intellectual disabilities and the clinicians who assist them (Healy & Walsh, 2007). It is also a primary reason that health promotion and educational needs for adults with intellectual disabilities are often unmet, leading to tremendous health disparities in this population group (Cooper et al., 2011).

Unfortunately, the education and training provided to health care professionals in communication techniques is lacking. Although schooled in basic therapeutic communication, most health care professionals are not taught methods adequate for reaching those whose communication skills are impaired, resulting in health care professionals who may avoid or are uncomfortable working with patients who have an intellectual disability (Hemm, Dagnan, & Meyer, 2015).

The current health care environment is characterized by uncertainty, reduced resources, and a degree of instability. At the same time health care funding is shrinking, worldwide attention is focused on reducing or eliminating health disparities among population groups, reflecting a dissonance in priorities. Health disparities must be addressed as both a funding issue and an ethical concern. People with disabilities, as a group, have minimal political influence and have been poorly served in the health care arena, with barriers to care ranging from health literacy to limited access, both physical and economic.

Healthy People 2020 (U.S. Department of Health and Human Services, 2010) documents the health disparities existing for those with disabilities and identifies the reduction of barriers to primary and preventative care for this population as a priority national issue. The World Health Organization's (WHO) Commission on Social Determinants of Health identifies the reduction of health inequities as an “ethical imperative” (WHO, 2008, p. 256). Health promotion and health teaching have been shown to be one of the most effective means of increasing population health while containing costs (WHO, 2007).

Unfortunately, the communication challenge between clinicians and patients with intellectual disabilities has served to further isolate an already marginalized population. Health care professionals are often uncomfortable around intellectually disabled individuals, citing both the inability to understand their patients' speech and a knowledge deficit on how best to help them (Tracy & Iacono, 2008). Education and training for clinicians in appropriate communication and time management techniques is crucial in meeting national and worldwide objectives and improving care for those with intellectual disabilities. The inherent time and financial constraints of a busy primary care practice can impede the professional's ability to effectively address the educational needs of patients with intellectual disabilities (Healy & Walsh, 2007). Teaching sessions, for example, may require a slower pace and a more relaxed atmosphere (Primeau & Frith, 2013). Issues of reimbursement and scheduling related to communicating become apparent with patients with intellectual disabilities, which is an aspect of care that often may not be considered but that is critical to success. A related issue for health care providers is knowledge of the unique physical and emotional needs of the intellectual disability population being served. Many with intellectual disabilities have comorbid conditions or symptoms of the disability itself that can greatly impact the communication methods used by the clinician.

Literature Review and Analysis

Despite an increase in recent research involving those with intellectual disabilities in the health care system, relatively little research focuses specifically on health communication with adults with intellectual disabilities. However, the reported results across the studies that do exist are remarkably similar (Focht-New, 2012; Healy & Walsh, 2007; Lennox, Diggens, & Ugoni, 1997; Sowney & Barr, 2007; Tracy & Iacono, 2008; Tuffrey-Wijne, Hollins, & Curfs, 2005; Ziviani, Lennox, Allison, Lyons, & Del Mar, 2004). Many of the sources in the literature are classic works from the past two decades; these sources, although older, continue to provide essential and fundamental knowledge about this sparsely researched topic.

The available research identified certain issues as crucial; Table 1 details issues discovered by pertinent studies. Communication issues were acknowledged by all as a primary barrier to quality care for adults with intellectual disabilities, and all studies recognized social and environmental supports, collaborative practice, an atmosphere of acceptance, increased reimbursement for longer appointments, and the development of mutual respect and trust as vital components of a successful relationship. A large majority of the studies also identified additional deficiencies related to both education of health care professionals and gaps in client responsibilities. Provider deficiencies include the lack of knowledge and understanding about the client's specific disability and the need for specialized communication training. Client knowledge gaps include the need for increased family, caregiver, and advocate involvement; adequate preparation for clinic visits; and satisfactory home monitoring of the treatment regimen. In addition to the research studies, there are guidelines available from both governmental (federal and state) and nongovernmental agencies; these guidelines are consistent with the noted research.

Literature Review Related to Issues for Health Care Providers and Patients with Intellectual Disabilities

Table 1:

Literature Review Related to Issues for Health Care Providers and Patients with Intellectual Disabilities

Conceptual Foundation

Currently, research on the population of individuals with intellectual disabilities emerges from two distinct foundational beliefs. One faction works from the vulnerable population's perspective, incorporating the core belief that intellectually disabled populations are vulnerable and fragile and therefore need directed and managed care, often with little active participation by the individuals themselves (Fisher, Green, Orkin, & Chinchilli, 2009). Many health care professionals with this perception focus primarily on the patient's deficits, dysfunction, and pathology (Cowger, 1994). Another faction focuses on the strengths perspective, applying the theory's fundamental principle that the most effective care is based on recognition and utilization of individual strengths and resiliency (Feeley & Gottlieb, 2000). Strengths perspective is based on the belief that clients possess strengths that can be used to motivate and improve quality of life, that the clinician–client relationship can facilitate the client's use of innate resources, that strengths can be discovered even in the most adverse circumstances, and that all environments contain useful and usable resources (Eimers, 2006).

ID-COMMUNICATE Educational Model and CE Program

After an extensive review of the literature, it was apparent that no one model currently existed to address the issue of effective health communication and adults with intellectual disabilities. Based on the literature and the theoretical framework of the strengths perspective, an educational model was created by one of the authors (M.S.P.) (Figure 1).

ID-COMMUNICATE framework.

Figure 1.

ID-COMMUNICATE framework.

ID-COMMUNICATE Educational Model. Information was synthesized from a wide variety of current interdisciplinary research, with a focus on effective interaction with adults with intellectual disabilities. Information on some

ID-COMMUNICATE topics, such as verbal and nonverbal communication, was more readily available in the literature, whereas other topics, such as time and reimbursement or environmental issues, required a more extensive search and consolidation of information. Entitled ID-COMMUNICATE, the model was designed to guide content and formation of an education program for health care providers. The information from the literature was divided into discrete groups of related information, and categories were developed that were critical for effective health communication with this population. The ID-COMMUNICATE model was organized into 10 distinct components.

ID-COMMUNICATE CE Program. The components of the ID-COMMUNICATE model were expanded and enhanced to develop a modular continuing education program, the ID-COMMUNICATE CE Program, with 10 learning modules (Table 2). Learning needs and objectives were identified and addressed as measurable outcomes for both individual modules and the overall program. Each module was designed to flow logically and was supplemented with resources and pertinent author-created graphics, teaching aids, and mnemonics to augment readability, comprehension, and learner attention. Fonts and a high school reading level were chosen for easy comprehension by health care professionals at all levels and ages (Burke & Greenberg, 2010).

ID-Communicate Continuing Education ProgramID-Communicate Continuing Education Program

Table 2:

ID-Communicate Continuing Education Program

Provision of information within each module was carefully assembled to facilitate flexibility of program presentation. The program was designed so materials could be presented in several formats, including print, online, and in person. The ID-COMMUNICATE CE Program can be used as an individualized self-study, as a group program, or as part of an educational curricula. Modules can be selected individually, or the entire CE program can be completed. It is applicable to all levels and types of health care professionals.

Evaluation. Initial validation of the ID-COMMUNICATE model and CE Program was accomplished through a content expert review and a pilot study of the CE Program. Evaluation tools created included a blueprint for the content expert analysis, a demographic information form, and a pretest–posttest instrument. Analysis of the ID-COMMUNICATE CE Program pilot study covered a variety of topics, including length, readability, pretest–posttest suitability, and questions on quality, appropriateness, and utility. These answers revealed a positive response overall, both in terms of knowledge gained and in relevance and usefulness of the material. Most of the pilot study participants indicated they had little prior knowledge about people with intellectual disabilities but found the CE program to be easy to follow, concise, clearly presented, and entertaining enough to capture and keep their interest (Primeau, 2012).

Feedback from participants in the pilot study indicates that the information gained was helpful in increasing clinician comfort when working with patients with intellectual disabilities and that the knowledge was useful in finding ways to effectively communicate, as well as ways to address the practical professional issues. Several barriers were identified during the creation, implementation, and evaluation of the CE Program, with the most pertinent barrier being the lack of available research in the literature. The ID-COMMUNICATE model and the ID-COMMUNICATE CE Program are in the initial stages of validation as important and useful tools for health care professionals.

Application to Practice. A primary aim of the ID-COMMUNICATE model and CE Program was to provide increased, evidence-based knowledge about an oftenmarginalized population. Increased interaction facilitates increased comfort, and increased comfort facilitates better communication. Better communication between health care professionals and individuals with intellectual disabilities may lead to a sustainable increase in health literacy and an ongoing decrease in health disparities (U.S. Department of Health and Human Services, n.d.). The flexibility of use of the ID-COMMUNICATE model facilitates the varying needs of individual clinicians and can be easily adapted and used by professionals in other disciplines as well.

However, several challenges remain. Although gaining some ground, research on this topic is still sparse. In addition, it is important that affective and socialization education of clinicians be included, especially for clinicians who may have limited contact with patients with intellectual disabilities. Also, for knowledge gained through the ID-COMMUNICATE program to be useful in the workplace, clinicians must be able to successfully adapt general program guidelines for the specific special needs of their clients, schedule sufficient visit time around often strict clinical time constraints, and effectively address the impact to financial reimbursement. Further studies could assist in more concisely identifying benefits to clinicians, and follow-up studies would facilitate assessment of long-term changes in effectiveness of health care communication with people with intellectual disabilities.

Conclusion

Inadequate communication between clinicians and adult clients with intellectual disabilities can result in poor quality health care, ineffective health coaching, and increased health disparities. Although most nursing professionals have education and experience in general therapeutic communication, the intricacies of effective, specialized communication are not commonly taught or known. CE programs on this topic can improve client outcomes for this complex population, but they are not currently available in any concise, comprehensive, and usable format. The ultimate goal of the ID-COMMUNICATE CE Program is to improve individual client outcomes and decrease overall health disparities through increased knowledge and competency in nursing practice.

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Literature Review Related to Issues for Health Care Providers and Patients with Intellectual Disabilities

Identified IssueStudy (Year)
Problematic communicationFocht-New (2012)
Social and environmental supportHealy & Walsh (2007)
Collaborative practiceLennox, Diggens, & Ugoni (1997)
Atmosphere of acceptance, respect, and trustSowney & Barr (2007)
Increased reimbursement for longer visitsTracy & Iacono (2008)
Tuffrey-Wijne, Hollins, & Curfs (2005)
Ziviani, Lennox, Allison, Lyons, & Del Mar (2004)
Lack of knowledge and understanding of client's disabilityHealy & Walsh (2007)
Need for specialized communication training for health care professionalsLennox et al. (1997)
Sowney & Barr (2007)
Tracy & Iacono (2008)
Tuffrey-Wijne et al. (2005)
Ziviani et al. (2004)
Need for increased family, caregiver, or advocate involvementHealy & Walsh (2007)
Adequate preparation for clinic visitsSowney & Barr (2007)
Satisfactory home monitoring of treatment regimenTuffrey-Wijne et al. (2005)
Ziviani et al. (2004)
Clinical practice guidelinesCenters for Disease Control and Prevention (2002)
North Carolina Office on Disability and Health (2002)
Therapeutic Guidelines (2012)
U.S. Department of Health and Human Services (2011)

ID-Communicate Continuing Education Program

Learning ModuleTitleContent
IntroductionKey facts Program objectives Pretest
Module 1Visit time/reimbursementPacing and rhythm Needed skill set Resources
Module 2Disability knowledgeStrengths perspective Client characteristics/issuesCommon consultation issues Client communication Resources
Module 3Clinician attitudesCommon issues Common client complaints Resources
Module 4EnvironmentFacility considerations Facility layout Resources
Module 5Provision of informationHealth literacy Age appropriateness Situational relevance Task teaching Confirmation of learning Clear communication techniques Resources
Module 6LanguagePlain language techniques Word meanings People first language Resources
Module 7Listening skillsClient attitudes Confirmation of learning Resources
Module 8Verbal communicationSpeaking skills Active voice Age appropriateness Clarification and repetition Resources
Module 9Nonverbal communicationWays to communicate Clinician expressions Resources
Module 10Teaching/communication aidsGeneral teaching strategies Session length Readability and plain language Communication aids Teaching evaluation Resources
ResourcesDisability resources/websites Post test Selected references
Authors

Dr. Primeau is Clinical Associate Professor, Coordinator Study Abroad Program, and Faculty, and Dr. Talley is Clinical Associate Professor and Part-Time Faculty, College of Nursing, University of Alabama in Huntsville, Huntsville, Alabama.

Dr. Primeau received a small research grant from Sigma Theta Tau International Beta Phi Chapter for her original doctoral research.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Marlena Seibert Primeau, DNP, RN, FNPBC, NHDP-BC, BSHECS, Clinical Associate Professor, Coordinator Study Abroad Program, and Faculty, College of Nursing, University of Alabama in Huntsville, 301 Sparkman Drive, NB 321, Huntsville, AL 35899; e-mail: primeam@uah.edu.

Received: November 23, 2017
Accepted: September 06, 2018

10.3928/00220124-20190102-06

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