Adults with intellectual and developmental disabilities have medical conditions similar to those among the general population but with more complex presentation, a extended life expectancy, and increased risk of morbidity and mortality. These adults' health education has been inadequate. In this qualitative study, the author describes the experiences of 23 registered nurses who provide health teaching to adults with intellectual and developmental disabilities, selection of and health topics taught, and teaching activities put into practice. The author used a rigorous descriptive, naturalistic inquiry design with purposive (n = 22) and snowball (n = 1) sampling. Data were gathered through individual interviews, focus groups, and nonparticipant observations, and analyzed with a constant comparative method. Findings concerned the educators' developmental process, use of a social context to teach, and health-teaching activities. Registered nurses s described their transformation from insecure, novice health educators to confident and passionate educators of adults with intellectual and developmental disabilities. Findings apply to multiple disciplines.
Middle-aged and older adults with intellectual and developmental disabilities (IDD) grew up in a time of discrimination, isolation, and segregation (Graham, 2005). These adults were children in a time when education was not assured for all. The Education for All Handicapped Children Act (EHA) of 1975 was a response to the limited opportunities for children with a variety of disabilities and made education possible for all children with disabilities (U.S. Department of Education, 2007). Those children with IDD are now adults. Many have not had quality education, and even fewer have been exposed to health information (Fisher, 2004).
At the same time, this population has a complex profile of physical and mental health conditions, often as a consequence of the neurological impact of their disability (Rehm & Bradley, 2005). This disability is influenced by inadequate health care (Lakin, 2006), long-term and multiple medications (Patja, Livanainen, Vesala, Oksanen, & Ruoppila, 2000), and numerous traumas experienced at the hands of health, education, and other professionals (Seybert, 2000). The outcome is a greater risk of morbidity and mortality.
This complex neurological platform is compounded by the development of common medical conditions that occur with aging (U.S. Public Health Service, 2006). Individuals with disability may experience premature mortality (Rehm & Bradley, 2005). However, their life expectancy is expanding (Fisher, 2004), now approaching that of people in the general population (Lakin, 2006).
A longer life, more complex health profile, common medical conditions, premature mortality, and limited education mean that this population of adults has a greater need for health education. Additionally, deinstitutionalization of individuals nationally has resulted in calls for increased community-based health care services and resources (Bruininks et al., 2007). People with IDD are also progressing in the area of self-advocacy, which may be influenced by a limited knowledge base about health.
Although IDD nursing has been recognized as a specialty by the American Nurses Association (Nehring, 1999), all nurses are in a position to act as resources for providing health teaching. Unfortunately, many nurses have not been adequately educated or have no experience working with this population of adults (Sanders et al., 2006). The stigma of having an IDD diagnosis is based on a long history of marginalization of this population, resulting in reluctance to provide this needed education (Ziviani, Lennox, Allison, Lyons, & Del Mar, 2004). I found few publications describing health teaching by registered nurses (RNs) for adults with IDD and no literature describing RNs' experiences of teaching. In this qualitative, descriptive study, I address this gap in the literature.
Health-teaching Literature Reviewed
I conducted a literature review before this study regarding the extent of health teaching for adults with IDD. Three electronic databases were accessed to complete this literature review: Academic Search Premier, 1984–2008; CINAHL, 2004–2008; and ERIC, 2003–2008. These databases focus on interdisciplinary subjects, nursing, and education literature, respectively. In addition, I obtained information about various organizations through Web sites, personal communication, and journals or books that I accessed in hard copy. Numerous articles reviewed the significance of morbidity, mortality, complexity of health conditions, limited education in the population with IDD and in the field of nursing, and the impact of deinstitutionalization. A minimal four studies contributed information about the health education of adults with IDD.
Aronow and Hahn (2005) conducted a pilot study to examine people with IDD (N = 201) at risk for health conditions and their response to two interventions, a health-risk appraisal (HRA) and follow-up visits with education. Health risks were multidimensional (social, psychological, medical, and functional). Increasing health strengths decreased risks with the intervention of both assessment and education. Aronow and Hahn further pointed out that people with IDD could benefit from participation in health education.
A second article published by Hahn and Aronow (2005), based on the same pilot study, presented findings from the follow-up visits. This intervention involved an individualized plan, at least two follow-up visits, and education. The total number of problems identified and recommendations made were significantly correlated (r = .65, p < .001). The most frequent recommendation was for preventive or health maintenance activities.
The attention paid to the health of women with IDD and their need for education has been deficient (Lunsky, Straiko, & Armstrong, 2003). Lunsky et al. (2003) observed that women with IDD do not have awareness of their bodies. Their study involved 22 women with mild to moderate IDD who participated in an 8-week education program with pre- and postgroup assessment interviews. Participants showed significant gains in health knowledge (p < .005), healthy behaviors (p < .05), and coping strategies (p < .005). Lunsky et al. reported that the greatest challenge was obtaining caregivers' continued participation in the health-teaching activities.
Blackford, Richardson, and Grieve (2000) evaluated prenatal education (N = 8) by means of a semistructured interview of mothers with disability in Canada using a qualitative approach. Overall, their interview data showed that the mothers described having satisfactory education. The areas in which the mothers' needs were not completely met were self-care information, adapted approaches to caring for the baby, anxiety with co-occurring chronic illness and pregnancy, encouragement of mutual support between healthy mothers and mothers with chronic illness, education of partners and family members, information about postnatal care, individualized needs, and advocacy by nurses. Blackford et al. suggested that nursing prenatal curricula include disability education.
The prevalence of dementia in adults with IDD is twice as high as in the general population and 6 times as high for people with Down syndrome (Lynggaard & Alexander, 2004). Lynggaard and Alexander developed a support group for four adults with IDD living with two individuals with dementia to help them better understand their housemate's changes. The groups met weekly for six 1-hr sessions. Teaching methods included group exercises, role plays, and discussion. Semistructured interviews of group members and staff occurred before sessions and at 1 and 6 months after the end of the sixth group. The adults with IDD and staff independently reported increased understanding and compassion that continued at 1 month and 6 months postgroup.
These are important studies identifying that people with IDD need health information, teaching methods that can be adapted, and that people with IDD can learn about health. The literature reviewed presents a picture of interrelated aspects that contribute to an expanded need for and limitation of health education opportunities.
Problem Summary and Research Questions
The problem that prompted this study was identified as limited health teaching for adults with IDD by RNs. Three research questions guided this qualitative, descriptive study, using naturalistic inquiry.
What are the experiences of RNs who provide health teaching to adults with IDD?
What health topics do RNs teach adults with IDD about, and how do they select these topics?
What teaching strategies do RNs use when teaching adults with IDD about health topics?
Definition of Terms
The terms intellectual disability and developmental disabilities have been and continue to be used interchangeably in the literature, yet they differ in particular aspects on the basis of IQ testing and functional outcome, respectively. Although the terms are used to describe people, they more accurately reflect a syndrome (Walsh, 2002). For the purposes of this study, I used adults with IDD to best recognize the overlap between these terms. I want to acknowledge that the social construction of disability has been recognized as having an impact on the understanding and application of these terms, meaning that they promote deficit expectations and labeling of individuals with IDD.
Lincoln and Guba's (1985) naturalistic inquiry paradigm, used in this study, describes multiple constructed realities as infinite perspectives or worldviews that bring people's understanding together. The RN and adult with IDD each have a perspective that has been influenced by education, life experiences, interactions, and much more, resulting in their individual realities. The RN and adult with IDD have realities that are multiple, constructed, interactive, and inseparable in the realms of health and education. In the process of teaching, RNs learned from the adults with IDD, and the adults with IDD learned from the RNs' teaching, ultimately creating new realities for each. This study was a value-bound inquiry, as Lincoln and Guba specified, and was influenced by my past experience with and present concerns from knowing and working with, as well as a strong desire to address, the paradigm of health teaching for adults with IDD.
RNs (N = 23) were accessed through purposive (n = 22) and snowball (n = 1) sampling. Institutional review board approval was obtained. No significant risks were posed to participants in this study. Confidentiality was maintained, and compensation was offered in the form of note cards produced by adults with IDD who work in a vocational setting.
The sample participants included three IDD residential agency RNs, one residential agency educator, 16 Health Care Quality Unit RNs (HCQU; a program of the Office of Developmental Programs in Pennsylvania), one nurse practitioner, one certified diabetes educator, and one forensic nurse–family therapist. Informed consent was obtained from the RNs. The adults with IDD, who were part of the observations, gave verbal permission to the RNs for me to observe health-teaching sessions.
Twelve RNs participated in individual interviews, 11 joined two focus groups, and seven nonparticipant observations of RNs teaching adults with IDD took place. In qualitative research, prolonged engagement (spending time with participants to build trust) and open-ended (interview questions and time) approaches produce data that evolve and emerge over time (Lincoln & Guba, 1985). Data collection occurred over the course of 3 months. Individual and focus-group interviews were audiotaped and professionally transcribed. Interviews and observations lasted 45–90 min. I kept field notes and performed self-reflexive journaling.
I used a questionnaire to collect demographic data about individual interviewees (Table 1) and focus-group participants (Table 2). Table 3 provides an overview of all participants' educational backgrounds. Nurses were interviewed and observed teaching in eight counties representing the southeast, northeast, central, and western regions of Pennsylvania, and a nurse in North Carolina who works nationally and internationally was interviewed by telephone.
I used a constant comparative method of data analysis (each transcript provided data that were analyzed and compared with other transcripts; Glaser & Strauss, 1967; Lincoln & Guba, 1985). NVivo8 provided a method of sorting data into clusters. Analysis was systematic and followed steps that built on each other to develop meaning with implications transferable to similar situations (Rubin & Rubin, 2005). Data saturation was reached when no new themes emerged with new interviews (Lincoln & Guba, 1985). This occurred after about the seventh interview when there was a rich description of the RNs' experiences.
Glaser and Strauss (1967) stated that the process of data analysis “fractures” the participant's story, which is later put back together. Once categories became saturated and integrated, I wrote a comprehensive description of data findings, and 10 of the study participants reviewed and validated the themes. In addition, one RN who was unable to join a focus group and one doctoral-level social worker with expertise in the field reviewed and supported the findings' validity.
Through this study's methodology, I sought to illustrate with a descriptive, qualitative stance the knowledge and practice of RNs who teach adults with IDD. The RNs who were interviewed taught the adults with IDD, who ranged in age from 18 to 83 years and represented a full spectrum of labels related to IQ testing. These RNs provided health teaching with differing regularity. About half of the RNs in the focus groups indicated they had, only once or twice, taught adults with IDD. The other, individually interviewed focus group participants—two of the residential agency RNs, the residential agency educator, and four of the HCQU RNs—taught at least monthly. One residential agency RN and the HCQU director of nursing had a past history of teaching. The three RNs who do not normally teach people with IDD taught as the opportunity arose within their practices. Adults with IDD arrived for health-teaching sessions from a variety of residential settings:
independent living (minimal caregiver support),
living with their own family,
shared living (living with an unrelated person or family),
community group home (residential agency), and
The RNs described providing health teaching in residential, home, vocational, and hospital settings located in urban, suburban, and rural areas of 27 counties in Pennsylvania. One RN interviewed, who lived in North Carolina, had national and international experience with adults with IDD in forensic and/or family therapy situations.
Data collection through interviews and observations produced clusters of data describing the RNs' experiences. These data clusters included a description of the developmental process of the nurse as educator and the teaching philosophy that emerged. The developmental process involved an illustration of the social context the RNs were accustomed to teach in and their use of specific social approaches. Health-teaching activities were diverse and, as the RNs witnessed, related to the progression of learning in adults with IDD. The RNs transformed as educators through an ever-evolving experience of teaching, becoming, as they described, passionate educators of adults with IDD. Next, I present the findings, with direct quotes from the participants.
Nurses' Experience as a Developmental Process
The RNs' developmental process focused on their evolution in becoming health educators of adults with IDD. The process began with the RNs' background in educational and experiential learning. The RNs also described the importance of understanding the history of limited learning opportunities for and recognizing the variation in communication and comprehension of adults with IDD. This experience was enhanced by commonly held characteristics of empathy and enthusiasm in teaching. Nurses were surprised by the capacity of the adults with IDD to learn. On reflection, the RNs developed new understanding, knowledge, and teaching practices, and their teaching philosophy evolved.
Nurses' early experiences
RNs spoke about early life experiences involving family members, schoolmates, and neighbors with IDD. They described fear and misunderstanding of IDD as a result of limited exposure in early experiences: “I heard that I would be dealing with people with [IDD], and I thought they would all have Down syndrome. That's what I knew about it” (Betty). Several nurses stated that they were not exposed to information in nursing school. “What did I learn about [IDD]? I knew more than my instructors did” (Marge).
Recognition of limited learning
The RNs explained that the outcome of limited learning was an increased sensitivity in educational settings and a decrease in self-worth for adults with IDD. “A group of people [were] left out of the education loop. They're the people we work with. With people that had no exposure to education, you have to be especially sensitive. They're not aware that this exists for them” (Lois).
Variation in comprehension and communication
The developmental process occurred simultaneously with the RNs' realization that adults with IDD have varying and unexpected capacities in comprehension and communication. “Classes that I had were all very mixed ability and disability levels. I had one student who was much more advanced than the other students in her particular group” (Grace).
The nurses put understanding differences in communication into practice. The RN who taught a session about the dangers of falling, whom I observed, helped the group understand a man with unclear speech by repeating his story back to the group.
Empathy and enthusiasm in teaching
The RNs demonstrated characteristics of empathy for people, enthusiasm for education, flexibility in teaching approaches, and creativity in developing teaching plans that contributed to their ongoing development as educators. Donna illustrated increased empathy after reflecting on her experiences: “I admit I had a little bit of a stereotype. I realized there were differences but I never realized every single one of these people are different individuals. . . . Their disability doesn't make [them] who they are.”
Virtually every RN interviewed individually and in the focus groups described teaching the adults with IDD as fun. Enthusiasm was evident in the manner in which they described their interest in teaching these adults: A participant in Focus Group 1 reflected on her first experience teaching adults with IDD.
It went better than I expected for a first-time experience, although I didn't have high expectations. [I] came away from there feeling like I did some good, that they got something that they could use. . . . I was impressed with their knowledge that they'd done this before. So that was interesting to me.
The RNs' thinking about adults with IDD as having deficits in capacity to learn was transformed though their direct practice experiences with the adults whom they taught. Betty spoke about her own experience of personal realization of these adults' interest in education. “A lot of people, even in this system, underestimate people's interest. I know I did. I was totally shocked at what they [adults with IDD] wanted to learn about.”
Continued transformation of the nurse educator
A teaching philosophy emerged in the data, showing that the RNs were continually challenged to “unknow” (Munhall, 1993) past beliefs about adults with IDD and learning. In addition, they viewed the adults from a stance of similarities to others they taught as well as one of accommodating differences.
Participants described challenging previously held beliefs as pivotal to their development. Betty routinely shifted her understanding of the capacities of adults with IDD through self-reflection. “I think they're so underestimated in a lot of facets of their lives and I still do it, too. I sort of mentally smack myself and say, ‘Growth period here.’”
The RNs taught from a stance of finding similarities in these adults' health conditions and need for education to those of adults in the general population. When speaking about teaching approaches planned for a proposed health mentorship program, Sarah explained, “There's no difference. This is a person who has health issues. I would do this for my mother.” Lois simply stated that “an individual is an individual is an individual.”
Individually recognizing and accommodating differences among adults with IDD were described as integral to the nurses' teaching philosophy. Marge noted differences in teaching as a positive and interesting experience. “It's pretty neat because they’re a diverse group 'cause they're coming from so many backgrounds. . . . It's pretty neat. It's not cookie cutter.”
RNs' developmental process evolved from their being insecure novice IDD health educators to becoming confident and passionate educators. This development was pivotal and overlapped with findings of teaching within a social context.
Nurses' Experience Teaching in a Social Context
In describing their teaching experiences, the RNs acknowledged the importance of enhancing social approaches that provided an overall social context. In this study, social context refers to the teaching that occurred through the interrelationship of the RNs' developing teaching philosophy; social approaches that facilitated access, initiation, and provision of health teaching; and the activities used to teach adults with IDD about health. The RNs shared the experience with caregivers and adults alike.
Partnering with caregivers
Caregivers were described, in the most positive manner, as the gatekeepers of opportunity for adults with IDD in that they advocate for, plan, and implement care. Caregivers were also responsible for setting aside time and arranging space for health-teaching sessions. In this study, I considered anyone addressing the needs of adults with IDD to be a caregiver. An assortment of challenges involving uninformed caregivers (e.g., skeptical attitudes, staff turnover) determined the RNs' success in gaining access to the adults with IDD and then initiating and completing health teaching. RNs were able to successfully initiate health teaching by using social approaches with caregivers in three venues. First, they supported caregivers in existing health care services provided for purposes other than teaching the adults. Second, RNs educated caregivers before teaching adults with IDD. Finally, requests for health teaching specifically for these adults were most often made after the RNs established a relationship with caregivers. Success with gaining access through caregivers required social approaches of building trust, developing relationships, using various teaching strategies to engage caregivers, increasing caregivers' knowledge and experience, and being responsive to them.
The nurses described the time they spent helping caregivers see the importance of offering health teaching, especially to those with limited communication. Once the caregivers saw the importance of this teaching, they became positive supporters of health education. A focus-group participant described the experience of successfully convincing caregivers through education as follows: “Getting to an ‘ah-hah’ moment [of caregivers] is so exciting for us. Then I do my own little inside victory dance.” The ultimate goal of developing relationships with caregivers was illustrated by a participant in Focus Group 2:
When we start to build relationships it's not usually with the person with the disability. We have to build a relationship with that agency, supports coordinator, program specialist, direct [caregivers], and then maybe we'll get the opportunity to build a relationship with the person.
Social approaches to health teaching
The support of caregivers was essential in the process of providing health teaching to adults with IDD. Once the RNs were in a position to provide such teaching, caregivers were described and observed as presenting both beneficial supports (e.g., acting as interpreters, continuing education outside of sessions) and challenges (e.g., interrupting teaching sessions, taking people out of training) until they understood the importance. Engaging adults with IDD in learning involved several social approaches that overlapped with the approaches used to gain access through caregivers.
The RNs described teaching adults with IDD using the social approaches of building trust; establishing relationships; creating boundaries; knowing adults and their challenges, including adults with IDD, in making choices; fostering interactions, being responsive to, and using encouragement in teaching. Of all the social approaches, all the RNs identified building trust as foundational. Betty explained, “The more people get used to me, and I feel ‘trust me’ . . . they [become] very open about talking about things and interacting with me.” Grace connected relationships to health. “I felt that as human beings we interact with other people, the environment, and ourselves and that those interactions are often a basis for our wellness or our ill health.”
Continued transformation of the nurse educator
The RNs' teaching philosophy was reinforced through their transformation in shared experiences with adults with IDD. A participant in Focus Group 1 described the importance of teaching in a social context as follows: “Most of the time using social interaction is one of the best teaching tools.”
Teaching adults with IDD in a social context contributed to the RNs' development from feeling insecure in their role of health educators of these adults to being passionate about it. Using social approaches offered both RNs and adults with IDD an opportunity for personal reflection and mutual transformation in which both were teachers and learners.
Nurses were drawn into the teaching process through their own struggle to become educators. The question “Why didn't you give up?” was posed to Lois, whose response described her struggle to become comfortable teaching adults with IDD. “The individuals . . . [it's] just . . . their own unique way. I said, ‘No. I'll keep doing this. I'll figure it out. I'll figure it out.’ And we did . . . 'cause I liked the people so much.”
The social context experiences furthered RNs' transformational process to being passionate educators of adults with IDD and becoming integrated with the health-teaching activities.
Findings Regarding Health-teaching Activities
Health-teaching activities involved selection of topics, preparation for teaching, use of health-teaching strategies, and observing the progression of adults with IDD as learners. The RNs described teaching individuals and groups, with an emphasis on individualized sessions. Teaching ranged from once to weekly. The RNs noted that group sizes of 6 to 15 worked best, and 1 hr was an ideal time frame for a session. A participant in Focus Group 2 noted, “There's one point where people are done. And when they are done, they are done.”
Selection of topics
Health-teaching topics were chosen through a variety of means. In the early stages of teaching, topics were mainly selected by agencies providing services and by the RNs. The process then expanded to focus more on topics requested by the adults with IDD. Surprise was Betty's reaction to hearing a long list of topics the adults wanted to learn. “I was totally blown away by what they wanted to know about.” Topics fell into four categories: health conditions (e.g., diabetes, hypertension), health promotion (e.g., men and women's health), mental health (e.g., depression, anxiety), and social areas (e.g., personal hygiene, community safety).
Preparation for teaching
Teaching preparation involved developing objectives, finding resources, and adapting material. Nurses stated that they learned a lot from each other. Lois prepared by observing other RNs. “I'm doing [breast health] at one of my agencies. . . . I hadn't done it yet so I'm doing it with one of the other nurses. I'm just really observing.”
The nurses used objectives loosely in planning to teach. Some put theirs in writing. Elizabeth discussed developing her underlying objectives and explained, “I think that they're in my head. ‘What are my goals? What do I want to get across? What's the priority here?’ Everyone else might have a different priority for this individual. What are the individual's goals?”
Resources such as pictures, magazines, books, posters, models, handouts, and ideas for teaching were accessed through a variety of means. RNs indicated that they found resources on the Internet; in stores for educators; magazines and books, movies, and nature; by sharing ideas; through conferences; and from others such as art therapists and caregivers. In several interviews, RNs explained that they created their own resources. Most often, a combination of methods was used to find resources.
The RNs described how they adapted almost all of the resources acquired. In addition, the teaching sessions themselves evolved according to new health information that became available and the individual needs of adults with IDD. Several RNs spoke about the challenge of finding materials that were simple to understand yet were adultlike. Speaking about using material meant for children, Betty explained, “You have different levels on the Internet and one of the things I really make a point of not doing is using information definitely for children. These are not children.” Adapting material was described as challenging, fascinating, and a unique challenge.
The health-teaching strategies built on elements of the developmental process, teaching philosophy, and need for social approaches. The RNs accessed resource materials that they adapted before teaching and in the process of teaching. Strategies involved approaches to facilitate learning and various methods of teaching commonly used when teaching people in the general population, such as questions, examples, demonstration, discussion, written activities, sharing experiences, PowerPoint presentations, interactive activities, and lecture. Their teaching approaches involved developing easy-to-understand information, repetition and review of material, use of humor, and planning for extra time needed to teach specific elements of health topics.
Explaining the need for the RN to use complex skills in a simple manner, Grace said, “You have to be really multifaceted, [using] multicapacities, and multidirections and yet not too complicated.” Steve noted some of the unique issues of having sufficient time in interacting with these adults. “I've worked with some pervasively delayed or disabled people and most of the time I think where we fall short is time, effort, and patience. When we ask somebody something, do we even let them really answer?”
Progress of adults with IDD as learners
Perseverance through the initial insecurity of teaching offered RNs the opportunity to further refine themselves as educators and to begin to reflect on the adult learners' progress. Learning occurred at a different pace for different people. James explained his perspective on the differences in the progress of the group as a whole as opposed to individual progress as follows: “I would say that the class changes [as a whole] and more slowly the individuals change.”
Betty observed, “Probably the way I know that they're learning is that they ask questions that are pertinent to what we're talking about. I think [I know this because of] the fact that they do ask questions that are appropriate and respond appropriately.”
RNs described unexpected responses from adults after teaching. Sarah exclaimed, “I've been in the supermarket and people [with IDD] have come to me and yelled, ‘Dysphasia, dysphasia!’ They remember me from the training.”
Continued transformation of the nurse educator
RNs provided examples of situations in which they felt personal insecurity and uncertainty about their own ability to teach adults with IDD. They were transformed from first feeling insecure about their ability to teach these adults, especially those with limited verbal expression, to then feeling surprise at the adults' capacity to learn. The RNs persevered in teaching and felt uncomfortable with not knowing what might emerge in sessions. Ultimately, they found confidence in and a passion for teaching adults with IDD. “I haven't done training for any individual with [a disability] that hasn't been fun, interesting. They're so willing to be involved and participate” (Marge).
In the process of teaching, the RNs reflected on what they had learned from the adults with IDD. Marge explained, “I shouldn't be surprised, but they teach me something every time I do a training. They give me something I'll use on my next training or a question I'll ask at the next session.” Agreeing with Marge, Donna reflected, “I learn something new almost every day.”
The need for health education for people with IDD has been established (Bruininks et al., 2007; Fisher, 2004; Ziviani et al., 2004), yet little literature has described teaching in practice (Aronow & Hahn, 2005; Blackford et al., 2000; Hahn & Aronow, 2005; Lunsky et al., 2003; Lynggaard & Alexander, 2004). I collected the data for this study and analyzed the findings throughout the process of writing this article. From the time of completion to the present, I have discovered no literature regarding nurses' experiences of teaching among this population. I found one article concerning the provision of health teaching for adults with IDD. Bollman and Davis (2009) conducted a study with two women with IDD. The intent was to evaluate their ability to identify and report inappropriate staff interactions. Using a multiple-probe design, Bollman and Davis found that the women learned and maintained skills for as many as 4 weeks postteaching.
Limitations of this study mainly involve the sample and generalizability of the findings. Sampling involved finding nurses who had teaching experience (purposive), and one of the nurses was found through snowball sampling, limiting the sample. In qualitative research, sample sizes are typically small, which is also true of this study. At best, the findings may be transferrable to similar situations rather than to generalizing to other nurses. In addition, participants in this study, with the exception of one nurse, were geographically located in one state only. Finally, HCQUs, which provide training and technical assistance to residential agencies, are unique to this state, limiting generalization of the nurses' experiences.
Further research is clearly needed to support the value of providing health education to adults with IDD. As health care consumers, this population has a need for informed care that is consistent with other areas of self-advocacy. In addition, a health education manual for adults with IDD could supplement teaching. I am currently developing a Web site to offer ideas about health education for this group of people.
The main recommendations for future research include the following: Replicate this study nationally and internationally to extend the description of the RNs' experiences, providing health teaching to outside a single state; conduct a follow-up study to determine whether the individual or focus-group interviews influence teaching activities provided or a change in frequency of teaching adults with IDD; conduct participatory action research with these adults to describe their own personal experiences of learning about health; survey RNs in community health settings to determine the extent of their encounters with adults with IDD, including beliefs, attitudes, educational needs of the RNs, and educational needs of the adults with IDD.
Research is one approach to addressing issues of social problems (Mertens, 2010). Health disparities in health promotion activities, diagnosis, and treatment continue to exist for this population. Health education for adults with IDD has not been adequately addressed in the current literature.
Empowering adults with IDD through health teaching has implications for multiple disciplines working with this population (e.g., direct care staff, families, social workers, psychologists). This descriptive, qualitative study is a beginning step toward understanding RNs' experiences and what and how RNs may teach adults with IDD. The 23 nurses represent an unknown number of nurses who encounter and teach adults with IDD every day.
The RNs' transformation occurred simultaneously with their own development as educators and through their teaching activities. The RNs described observing the adults' progress in learning. They observed that accomplishments occurred in small increments that they often saw as remarkable progress. The RNs continually reflected on the interweaving of successes and struggles in a developmental process, from teaching in a social context through health-teaching activities provided to adults with IDD. This process continually informed their teaching philosophy. The RNs explained that their interest, comfort, and confidence in teaching adults with IDD continued to increase to the point at which they commented that they were learning nearly every day from the adults they were teaching.
In conclusion, this study provides a description of RNs' experiences of teaching adults with IDD. The RNs were emphatic about both the importance of teaching this population and the beneficial outcomes to the adults that evolved over time. Grace's reflection on the overall experience of the RNs' experience of transformation best summarizes and represents the RNs' experiences and teaching philosophy:
I also learned more about what I came to call the magic of teaching. I realized that sometimes you could prepare and you thought you had a really wonderful lesson, but still things just didn't come together. Then other days you weren't prepared and just knew you were gonna do the best you could that day and that was a wonderful lesson and everybody was completely engaged and you think, “Where does that come from? How did that happen?” It was a time to learn that there's more, it's not just about preparation. It's about this dynamic between us all in the moment and sometimes it's really magical. Other times you don't have quite that level. It was a joy to go through that, the struggles. And if you didn't go through the struggles, you wouldn't come to the magic.
Editor-in-Charge: Steven J. Taylor