A Qualitative Study of Emergency Nurses' Perceptions and Experience in Caring for Individuals with Intellectual Disabilities in the United States

Abstract

Emergency nurses' experience of caring for individuals with intellectual disabilities (ID) is the focus of this study. The emergency department (ED) provides a crucial study site as vulnerable populations, including the uninsured, homeless and those with ID, are likely to be high utilizers of emergency services for acute, psychiatric and primary care needs.¹ Nursing knowledge and attitudes regarding this vulnerable population is a topic not well articulated in the nursing literature.

Methods
This qualitative, descriptive case study explored the experiences of a purposive sample of 23 emergency nurses. The interviews consisted of mostly open-ended questions that were tape recorded and transcribed verbatim. The transcribed interviews were content analyzed by a panel of three nurse researchers and reviewed by a clinical expert with more than 16 years of ED nursing experience.

Results
Nurses perceived care for the ID patient to be difficult due to communication barriers and a general lack of experience and knowledge in providing care for this population. A lack of comfort and frustration was also expressed related to provision of care.

Discussion
Nurses in a variety of practice settings need to plan for providing health services for this vulnerable population. The life expectancy for those with ID is increasing, and they likely will have more complex needs as they age. Knowledge of the experiences of ED nurses will assist other nurses to problem solve and advocate for holistic, competent care. An understanding of nurses' perceptions factors into both the quality of and access to care for this vulnerable population.

Keywords: emergency nursing , intellectual disability , mental retardation

INTRODUCTION

Access to quality health services for individuals with intellectual disability (ID) has been a public health concern in the United States since the deinstitutionalization movement of the 1970s. A knowledge gap among health care workers in relation to this vulnerable population, as well as a lack of sensitivity to their many physical and psychosocial needs, exists. The focus of this study is emergency nurses' experience of caring for individuals with ID. The emergency department (ED) provides a crucial study site as vulnerable populations, including the uninsured, homeless and those with ID, are likely to be high utilizers of emergency services for acute, psychiatric and primary care needs.¹ Nursing knowledge and attitudes regarding this population is a topic not well articulated in the nursing literature.

BACKGROUND

Historically in the United States, mental retardation has been the diagnosis assigned to those with significant limitations in intellectual functioning and adaptive behavior. As of January 2007, the term Intellectual Disability (ID) replaces the former label.² Three criteria need to be met in order to diagnose an individual with ID. These include: impaired intellectual functioning level (IQ) of 70 or less, onset before the age of 18, and significant limitations in two or more adaptive skill areas, including: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety.^3-4 Adaptive skills are needed to actively engage in community living, and people with ID by definition have difficulty interacting with their environment. They are considered a vulnerable population that places additional demands on the health care system by virtue of their specific needs.⁵

SIGNIFICANCE

An estimated 7 to 8 million Americans of all ages, or roughly three percent of the general population, live with ID.^6-7 Intellectual disability can affect anyone from any ethnic or economic background. These vulnerable individuals often rely on the judgment of family and non-family, proxy decision makers for access to health care and other services.

Nationwide, the number of ID residents in nursing facilities and public and private institutions has been decreasing steadily, so that in 2000 the proportion of individuals living in group homes increased to 61% compared to 27% in institutional placements.⁸ An estimated 60% of individuals with ID currently live with family caregivers. Many are now living into middle and old age due to advances in medicine and assistive technologies, and their parents will need to establish formal living arrangements when their ID children live beyond the parents' capacity to care for them.^9-10 Unfortunately, community resources to support those with ID are often lacking or inadequate.^10-11 The aging of family caretakers, coupled with the aging of the ID population, portends a growing cohort of individuals with special needs that places additional stress on existing community support services and resources. The increase in age of persons with ID will also result in an expected increase in hospital and ED visits, requiring nurses to increase their level of expertise with this population.

Additionally, the uninsured, homeless and those with ID tend to be high utilizers of emergency services for acute, psychiatric and primary care needs.¹ In a study by four ED physicians, it was reported that some emergency physicians were uncomfortable when interacting with individuals with ID, which often carried over to the assessment and management of these patients in the ED.¹² Is it possible that ED nurses might also be uncomfortable when interacting with those with ID, and could this discomfort influence the care that is received? Furthermore, with the increased utilization and overcrowding of EDs, already busy nurses will be required to become more task-oriented rather than focused on fostering quality nurse-patient relationships.⁵ Since caring for individuals with ID is often complex and time consuming, time itself becomes an important component in the delivery of nursing care to this population. For example, many individuals with ID have difficulty communicating their needs effectively, yet some of these individuals may be accompanied to the ED by a person who is unfamiliar with the specific care issues or who is unable to assist with patient communication. These issues factor into a potentially complex interaction when nurses encounter those with ID in the emergency room setting.

How comfortable and prepared are emergency nurses to respond to the unique care needs of this vulnerable population? The purpose of this study was to explore the nurses' experiences and perceptions of caring for individuals with ID in the emergency department.

METHODS

This study was implemented in the spring of 2004 utilizing a descriptive, exploratory, qualitative case study design. The case study research design was employed for the purpose of "investigating activities or complex processes that are not easily separated from the social context within which they occur." ¹³ Two emergency departments, both academic medical centers, were included in this study. Minimally structured interviews continued until saturation (i.e., data collection) became repetitious and no new thematic concepts were discovered.

SAMPLE

Purposive sampling of 23 emergency nurse volunteers was obtained from two academic medical centers located more than 100 miles apart. One facility was located in an urban environment, while the other was located in a more suburban environment. It was expected that ED patients would likely represent the urban, suburban and semi-rural communities surrounding each facility. Purposive or purposeful sampling selects participants in qualitative research for their experience with the culture, phenomenon or social process of interest, ¹⁴ in this case the experience of providing care for persons with ID in the emergency room setting.

STUDY INSTRUMENTS

Qualitative interviews consisted of mostly open-ended and several close-ended questions with probes used to direct the interview. The interview guide (see Table 1) included demographic information such as age, level of education (RN diploma, AD, BSN, MSN or Doctorate), length of time worked in the ED, number of those with ID for whom the participant provides service and evidence of any formal training in working with developmental disabilities, specifically ID. Participants were asked to describe their perceptions, including their experiences, differences in care needs, resources and knowledge needed to provide care specifically for those with ID.

PROCEDURE

ED nurses were invited to participate in the study during their workday by the researchers. Qualitative interviews lasted approximately 45 minutes and were conducted in a private office within the ED. Interviews were audiotaped and transcribed verbatim. Data were anonymous and confidential. Researchers used participant observation as an alternate source of data for enhancing triangulation of information gathered through the interviews.

Researchers took descriptive field notes related to individual interviews (i.e., nonverbal behaviors and other contextual information), including important information that is often shared while the researcher and participant are parting, and captured post-interview information by making field notes immediately after interview was completed. In addition, researchers recorded reflective field notes to document their own responses to the interviews and the overall research process.

DATA ANALYSIS

A panel of eight nurses with a minimum of three years to a maximum of 15 years experience in disabilities nursing and in the direct care of individuals with ID reviewed the interview guide for face validity. The 23 taped interviews and field notes were transcribed verbatim. The researchers listened to the tapes while reviewing transcriptions for accuracy. Data collection, analysis and verification of the development of thematic explanations occurred simultaneously throughout this study.

Three nurse researchers applied content analysis (i.e., the process of identifying, coding and categorizing the primary patterns in the data). Data were coded into meaningful categories according to themes and concepts that were recurrent throughout the data. Analysis of data was ongoing throughout the process of data collection, transcription and repeated readings of the text by the researchers. Beginning with an initial overview of the nurses' experience, researchers progressed to a more focused reflection and interpretation of data. Interpreter agreement as part of the content analysis was utilized as a measure of consistency during the independent coding process. A nurse expert with more than 16 years of ED experience reviewed interview notes, categories, themes and interpretations of findings for face validity. Summary data were shared with nurse participants for validation of findings. Descriptive statistics were used to provide summary profiles of the subjects.

TRUSTWORTHINESS

Methods of establishing trustworthiness in qualitative studies differ from those used in quantitative research. Qualitative research uses methods that are consistent with the paradigm of naturalistic inquiry.^14-15 In this paradigm, credibility is the equivalent of internal validity, transferability is the equivalent of external validity, dependability is the equivalent of reliability and confirmability is the equivalent of objectivity. These measures to ensure rigor in qualitative research were applied to the current study.

Credibility (the degree to which data analysis is realistically reflected) was established through peer debriefing and member checks. Peer debriefing permitted the researchers to test ideas about emerging themes and to discuss relevant issues. For this study, an audit trail was maintained of the raw data of interview tapes, products of data reduction and field notes. Member checks, described as the most important technique for establishing credibility,^14-15 allowed researchers to share emerging themes with participants for their feedback, or confirmability.

HUMAN SUBJECTS

Institutional Review Board (IRB) and approval to conduct the study at both medical centers was obtained. The researchers approached the ED nurses at work, and explained and reviewed the consent form with each participant. Confidentiality was safeguarded through a system of coding (i.e., participants were identified only by code numbers), which was maintained in a locked file cabinet in a locked office by the lead researcher.

RESULTS

The majority of the nurse participants were female (96%) with a mean age of 40 (standard deviation [SD] 9.7 years). Their ages ranged from 23 to 59 years. Educational levels included: Diploma RN (44%), BSN (38%), AD (22%), and MSN (4%). The mean number of years working in the ED was 8 years, with a range of 1 to 22 years experience.

The findings of this study are presented as three major themes representing the emergency nurses perceptions and experience in working with this population. These include: 1) knowledge limitations, 2) communication challenges and 3) lack of comfort and frustration. Knowledge limitations were related to lack of formal training and experience in the care of those with ID. Communication challenges included difficulties sending and receiving messages when the nurses encountered ID patients in the ED. The theme of lack of comfort and frustration focused on care issues, including the combination of feeling ill-prepared to address the specific needs of this population, the unpredictable behavior of the individual patient, the influence of stigma and the additional time demand often required in providing service for those with ID.

Theme 1: Lack of knowledge and experience in providing care

In analyzing the data, a general lack of knowledge about this population was most evident and referred to the lack of formal training in nursing education coupled with limited experience in actually caring for ID patients. Participants were asked whether they had formal training, including any classes or education, in working with ID. In addition, they were asked about their experiences since graduation and whether they had attended any continuing education on ID. Most nurses could not recall classes in nursing school related to the topic of intellectual disability or commented that it may have been briefly addressed (i.e., "touched on") in either their pediatric or psychiatric rotations. Only one person identified a continuing education program related to information about group homes. The following comments provide examples:

"You know I honestly don't remember. They probably touched on it in like psychology and stuff like that."

"From what I remember it was in pediatrics....you know like a discussion maybe about it, but not how to deal with....maybe just like a brief history on mental retardation."

"Um, definitely not in continuing ed., maybe in my psych courses in my undergraduate nursing."

Individual clinical experience with ID varied from infrequent to numerous encounters with "at least 50 or 60 patients." The majority of respondents acquired clinical experience following their graduation from nursing school; most respondents could not recall any clinical experiences with ID patients in their generic nursing school programs. In addition, two respondents expressed confusion regarding mental illness and intellectual disability. The following comments illustrate the previous points:

"I'm thinking in geriatrics we saw more of it, because we took care of more of the chronically ill, mentally handicapped patients."

"I mean we went to a home where there was all trach care [referring to a tracheostomy], that's all they did was patients with trach's, and half of them had mental retardation, and half of them were not. So we spent a day or two there, learning about trach's and taking care of patients with trach's."

The lack of formal classroom instruction and clinical experience was summarized succinctly by one nurse who stated: "My experience is so limited, I don't even know what I don't know."

Theme 2: Communication challenges including difficulties sending and receiving messages

The next dominant theme following the expression of a lack of classroom or clinical experience in managing the care of the individual with ID dealt with communication challenges. These communication challenges included the respondents' difficulties sending and receiving messages while interacting with the individual with ID. The following examples illustrate:

"There was a, I wouldn't say it was negative. It's just more difficult to communicate because some aren't able to communicate."

"Communication, care giving, I mean it's difficult. They don't recognize, they don't know you, they don't always want to open up to you."

"'Cause I think with mentally retarded you don't know if they're not able to speak well it doesn't mean they can't understand, or maybe they can't understand but they can speak well. You'd have to figure out what's going on and tailor your care to their needs."

In explaining these communication difficulties, some nurses questioned their ability to accurately assess the patient. This, in turn, contributed to a sense of inadequacy in being able to assess the effectiveness of care provided, as expressed in the following statements:

"The communication with the patient, you still don't know what they want or it's hard to tell if he was having pain, he couldn't tell you where his pain was so as far as adequately medicating him, you never knew if he was getting enough pain medication."

"The young girl I had yesterday has MR and she had belly pain. The most difficult thing was assessing her pain level, because she intermittently would be moaning but then would be able to answer questions, so to give her pain medication in effect take care to help her, I had to determine if she was truly in pain which was very challenging because she was moaning. She is very verbal but her answers aren't always appropriate. So determining whether or not she was really in pain was really difficult and I don't know if I was good at it."

A few nurses compared communication challenges as similar to working with Alzheimer's or stroke patients. Others reported that communication was facilitated when a caregiver familiar with the individual accompanied them to the ED, as reported in the following:

"And then someone who you know can help with speech communication problems, who understands them. Some of them don't have the clearest speech. I think our biggest thing is being able to effectively communicate with them. So we can educate people in advance to come in with someone who sees them a lot and understands whatever kind of language barrier they have or their hand gestures or facial experiences."

Theme 3: Lack of comfort and frustration in providing care

Many nurses expressed a lack of comfort and frustration in providing care for those with ID. This discomfort was related to communication difficulties and the lack of classroom or clinical experience with ID as discussed above, and to a concern that patients' individual behavior is unpredictable. The following two examples illustrate respondents' concerns:

"I know that one of my experiences that I had, he was profoundly mentally retarded, he could just flip, like lash out at like the drop of a hat, I mean he was a really nice man, but then just like that he could be aggressive. So his group home person stayed with him. But I remember taking care of him I was a little uncomfortable at first thinking that might happen, but it never did."

"It's difficult. She (individual with ID) was quite unpredictable and you couldn't pretend you had to keep an eye on her constantly all the time. And when you are dealing with a busy department and we are taking care of three or four critically ill people, it gets hard to keep an eye on her all the time."

However, one nurse observed that for some nurses the discomfort was probably influenced by a stigma that is associated with ID. This nurse explained: "How is care different for the mentally retarded patient as many of our trauma, stoke, or our patients under the influence of drugs and alcohol can't communicate effectively with us, and yet we are able to assess and treat them?" The following two examples illustrate this discomfort and the need to seek support from staff with more experience in care of those with ID:

"Yes, I'm not personally; I'm not comfortable working with mentally challenged. I mean, I'm just not comfortable. And we just don't see a whole lot, and when someone does come through the emergency room, they always have a caregiver with them. On the floors, they don't always."

"There are enough people here to have support staff so that if someone is uncomfortable there is someone with experience who has worked with patients with MR or dementia who will go in and provide support or know how."

Because of all of the above, nurses described needing more time in managing the care of those with ID. But, they also reported frustration related to inadequate staffing and a lack of time, which prevents them from being able to focus their care accordingly. As noted:

"We sort of integrate them into our care but it's where the frustrations come in cause it's like OK, I'm supposed to be taking care of this person who has many needs, and I have other people also. So I think we do it already, but it's not written out, and sometimes when the crap hits the fan you really cut close, and you don't have much leeway in saying OK I have extra help. We always manage it's just sometimes it's not as easy as other times.
Well the fact that they don't always understand exactly what you're doing to them. And then, it just takes a lot more time than you have to spend with them just so you're not rushing into anything with them to scare them or to get them upset. So it's not like, with your typical patient you can sit and say 'this is what I'm doing, this is why I have to do this' you just have to really take a lot more time with them."

DISCUSSION

The nurses studied perceived care for the ID patient to be difficult due to communication barriers and a general lack of experience and knowledge in providing care for this population. They identified deficits in their educational and clinical experiences in working with those with ID. In addition, the nurses expressed a lack of comfort and frustration related to nursing care issues, which could also be attributed to their feeling ill-prepared to address the specific needs of this population, the unpredictable behavior of the individual patient, the influence of stigma and the additional time demand often required in providing service for those with ID.

The stigma regarding ID that has been linked to societal misunderstandings, even among many health care professionals, was also identified by the nurses in this study. Similarly, a study of ED physicians reported that some physicians were uncomfortable when interacting with individuals with ID, which influenced the assessment and management of these patients in the ED. ¹² Nurses in this current study identified discomfort and frustration in the care of this population and noted the stigma that accompanied the ID diagnosis. The discomfort that has been described by health care professionals when they interact with ID patients often influences the quality of care provided^16-17 and exacerbates the individual burden for persons with ID.¹ Thus, the stigma and general lack of knowledge about ID negatively impacts the health care and quality of life of individuals with ID.

Because of their increased longevity, individuals with ID will confront the same chronic illnesses (i.e., cardiovascular disease, cancer, diabetes) that affect the general aging population.^18-20 Individuals with ID also have an increased prevalence of certain health conditions, including thyroid disease, seizure disorders, obesity, ocular anomalies and poor oral health.^20-23 Additional health care services will therefore be needed as this population ages. As previously noted, in addition to the uninsured and homeless, individuals with ID tend to be high utilizers of emergency services for acute, psychiatric and primary care needs. ¹ The increase in age of persons with ID will also result in an expected increase in hospital and ED visits. This will require nurses to increase their level of expertise with this population, which, according to this study, was challenging for this group of ED nurses.

Nurses in a variety of practice settings need to plan for providing health services for individuals with ID. The life expectancy for those with ID is increasing, and they likely will have more complex needs as they age. Knowledge of the experiences of ED nurses will assist other nurses to problem solve and advocate for holistic, competent care. An understanding of nurses' perceptions, as identified by this study, factors into both the quality of and access to care for this vulnerable population.

LIMITATIONS

Nursing opinions and attitudes regarding this vulnerable population is a topic not well articulated in the nursing literature. Nursing experience and classroom instruction with this population is limited. Communication difficulties and the stigma associated with ID can influence the nurse's approach to the individual with ID in the ED. This study recognized the importance of context and the perceptions of practicing nurses as valuable in understanding the care experience of individuals with ID in this setting. Generalizations to nurses outside the study participants are, however, not relevant.

CONCLUSIONS

Advances in medicine, treatments and technology are helping individuals with intellectual disabilities live longer. Additional health care services will be needed as this population ages, as with increasing longevity they are likely to increase their utilization of the ED for emergent and non-emergent care.

This qualitative case study of nurses in two emergency departments identified three themes related to the nurses' perceptions and experience in working with this population. These include: 1) knowledge limitations, 2) communication challenges and 3) lack of comfort and frustration.

Practice and Research Implications

The increased understanding of emergency nurses' experience provided by this qualitative study has important clinical implications for nurses and caregivers of those with ID. Nurses in all practice settings, therefore, will need to plan to provide care for those with intellectual disability, as those with ID have greater health care needs when compared to the general population.

The nurse participants in this study identified knowledge deficits related to the care of those with ID, expressing a lack of preparation in their nursing school experience. Nursing curriculum, therefore, should include instruction regarding caring for individuals with intellectual disabilities. Additional emphasis should be focused on the effects of aging in this population, since until recently many individuals with ID were not living into their middle and elder years. In courses where therapeutic communication skills are developed, communication skills directed toward those who are mentally challenged should be included. Further, the nurses' role will need to expand to include general advocacy, training, holistic care and leadership, since individuals with ID often experience great disparity when accessing health care services.

This poorly studied, vulnerable population could benefit from scholarly knowledge generated as a result of research.Nurses should use the findings in this study to explore their own experiences and knowledge deficits related to this population. Knowledge of these experiences will assist nurses to problem solve and advocate for holistic, competent care. Nursing knowledge and attitudes regarding this population is a topic not well articulated in the nursing literature, and future studies should be designed to contribute to the knowledge base. Hopefully, these efforts will translate into improvements in the quality of care and life for those with ID.