Nurse Practitioner Knowledge and Attitudes Regarding Developmental Disabilities Health Screening and Health Promotion

John Boisseau, MSN, APRN, BC, CDDN and Roseann Barrett, PhD, RN

Abstract

This study was conducted to describe nurse practitioner knowledge and attitudes of developmental disabilities (DD) health screening and health promotion. Health promotion is an important part of disease prevention and health maintenance, yet it has been shown that people with DD often miss critical screenings such as colonoscopies, mammograms, and other recommended diagnostic procedures. A survey designed to describe nurse practitioner knowledge and attitudes of DD health screening and health promotion was created for this study and mailed to 200 randomly selected nurse practitioners from across Massachusetts. There were 68 responses, of which 48 met inclusion criteria for this study. Several gaps in knowledge related to common medical problems in people with DD were identified. In addition, some responses suggested negative attitudes toward the health promotion of people with DD. The data from this study suggests some nurse practitioners do not have adequate knowledge of health issues specific to people with DD, and this knowledge gap could play a role in healthcare disparity for people with DD. Attitudes and stereotypes could also be factors that influence the decisions of nurse practitioners who plan health promotion activities for their patients with DD.

Keywords: developmental disabilities , Healthcare disparity , nurse practitioner , health promotion

INTRODUCTION

Throughout history, persons with various intellectual impairments have been regarded and treated with fear, loathing, and cruelty. Even in modern times, people with developmental disabilities (DD) are sometimes treated with prejudice and a lack of understanding. This may be part of the cause of the health promotion disparity that exists today for people with DD. There also seems to be inadequate knowledge among healthcare providers related to the special health promotion needs of people with DD. Healthcare providers sometimes have preconceived ideas about the behavior of people with developmental disabilities that may interfere with the assessment, intervention, and treatment process. The purpose of this study was to describe nurse practitioner knowledge and attitudes of DD health screening and health promotion.

REVIEW OF EXISTING LITERATURE

There have been some studies aimed at understanding possible causes of healthcare disparity for people with DD. A 2005 UCLA study found that only 32% of 167 adults with DD received age-appropriate health screenings for cholesterol, blood pressure, hearing, and vision¹. McConkey, Moore, and Marshall (2002) found that 54% of the patients from their study were lacking a variety of routine health services, including wellness visits to check blood pressure and preventative diagnostic blood work, weight checks, and eye examinations². These examples of healthcare disparity represent a serious problem for people with DD.

Finlayson et al (2004) studied barriers to healthcare for people with developmental disabilities with an emphasis on nurse practitioner knowledge³. The study was conducted at the University of Glasgow (Scotland) and consisted of a survey of 201 advanced practice nurses. The researchers reported that 57% of the respondents had not received any kind of DD-specific training. When asked questions pertaining to DD knowledge, only 24% were aware that autism was more common in this population. Fewer than 20% were aware that gastrointestinal disorders, cerumen impaction, obesity, osteoporosis, and cataracts were more common in the DD population than in the general population. Melville et al (2005) examined the knowledge, attitudes, and training needs of advanced practice nurses via a survey consisting of questions about medical problems common to people with developmental disabilities, such as obesity, epilepsy, heart disease, depression, dementia, hypothyroidism, and cataracts⁴. A high percentage of the respondents were not previously aware of the increased risk in people with DD to whom they were providing services.

Part of the problem in terms of knowledge could be lack of education related to understanding the special needs of people with DD. Melville (2005) found that only 16 out of 201 (8%) APNs reported having any training in providing care for this population. Similar findings from the United States were reported from the 2002 Surgeon General's Conference on Health Disparities and Mental Retardation⁵. The report from the conference identified a gap in the education of medical professionals in the care of people with DD and recommended "training into the basic and specialized education of all health care providers...in serving people with mental retardation" (National Institute of Health, 2002).

In addition to lack of knowledge, healthcare provider attitudes towards people with DD may be a barrier to proper health maintenance activities. An overriding lack of understanding and negative attitudes toward caring for people with DD can also lead to substandard health and wellness screening. Theirry (2000) suggests that healthcare provider attitudes may be the most difficult barriers to overcome⁶. In terms of routine health screening, they may have the misconception that women with DD do not need regular gynecological care. Despite their disabilities, women of this population are at risk for breast and cervical cancer, yet physical and attitudinal barriers continue to contribute to their not getting screened. Powrie (2003) described the conflicting views about the provision of health promotion and health screening for people with learning disabilities⁷. One respondent commented it was unclear whether or not a Pap smear was appropriate because the patient may not understand the procedure and feel like she was being violated. In the discussion of communication barriers, Powrie (2003) stated that women with learning disabilities are less likely to have a cervical smear test than their counterparts because of the assumption that they are not sexually active.

To improve health promotion for people with DD, the Massachusetts Department of Mental Retardation (DMR) published a manual in conjunction with its Health Promotion and Coordination Initiative⁸. The manual, which includes guidelines of recommended health screenings specifically for people with DD, was sent to over 7,000 physicians. The manual is also available online, but the extent to which the guidelines are recognized, accessed, and utilized remains unclear.

METHODS

Survey Instrument

The DD Health Promotion Knowledge and Attitudes Survey was developed because no measure of nurse practitioner knowledge and attitudes of DD health promotion was found. The survey was created using a process of literature review and expert review. Twenty questions were developed for the purpose of describing nurse practitioners' knowledge and attitudes toward developmental disabilities health promotion. Questions related to respondents' knowledge of developmental disabilities health screening were based on recommendations from the DMR Health Promotion Initiative Manual (2003) and included items such as pelvic exams, mammograms, colorectal screening, mental health screening, hypertension, osteoporosis, and thyroid screening. Additional questions related to respondents' perceived knowledge and quality of developmental disabilities education were drawn from reviewed studies related to knowledge. Questions regarding attitudes toward developmental disabilities health screening were drawn from studies related to attitudes, healthcare disparity, and from the DMR Health Promotion Initiative manual (DMR, 2003; Powrie, 2003; Melville, 2005). The survey was then reviewed by Regis College faculty prior to examination by a field expert. Sharon Oxx, RN, MSN, Director of Health Services for DMR, reviewed the questionnaire for content validity prior to pilot testing, and determined it was a comprehensive and valid instrument for this study (Sharon Oxx, personal communication, April 20, 2006).

Data Collection and Sample

Data were collected for a one-month period between July and August 2006. A random sample of 200 nurse practitioners from a variety of practice settings was obtained from the Massachusetts Board of Registered Nursing (BORN) database. Of the 68 responses, 20 were excluded from the study because they either had immediate family members with developmental disabilities or stated that more than 20% of their practice included patients with developmental disabilities. The final number of respondents used for this study was 48. Table 1 demonstrates the sample demographics.

Table 1. Sample Characteristics (n=48)

Characteristics	N	%
Gender
Male	3	6
Female	45	94
Ethnicity
Caucasian	43	90
African American	1	2
Asian	1	2
Other	3	6
Employment Status
Full time	26	54
Part time	17	36
Per-diem	3	6
Not working	2	4
Practice Setting
Primary care adults	12	25
Primary care pediatrics	5	11
Acute/emergency care	4	8
In-patient care	4	8
Mental health	4	8
OB/GYN	1	2
Other	18	38
Percentage of DD clients in practice
	Mean	SD
	4.1%	4.8

Survey packets including letters of introduction, demographic surveys, and knowledge and attitudes surveys were mailed to potential participants. The letter included an explanation of the purpose of the study, an assurance to potential participants that participation was completely voluntary and that by returning the survey they were giving their consent for participation in the study. Participants were informed that there were no known risks associated with this study, and they were assured that their personal identities would be protected and that their contact information would not be used for any other purpose but to conduct this study. Finally, findings would be presented in a way that would make it impossible to correlate data with any particular person or group within the sample. Respondents were informed that by returning the survey, they were giving their consent for participation in this study. The packet also included a self-addressed stamped envelope and instructions for completing the survey and returning it to the investigator.

Data Analyses

Completed questionnaires returned were examined for completeness before being included in this study. Data were entered into SPSS, Student Version 14 for Windows. The data were summarized with descriptive statistics including frequency distributions, measures of central tendency, and dispersion. These statistics were examined to determine the presence of systematic missing data, outliers, and marked skewness. Four of the survey items had at least three missing responses, but none of the questions had more than four missing responses and, therefore, the investigator decided to include them in the final analysis.

RESULTS

Health Screening Knowledge

Items related to knowledge were based on the DMR Health Promotion Initiative Manual (2003) recommendations for health screenings. All respondents correctly answered questions about the need for annual hypertension and colorectal cancer screening. A majority of the respondents answered questions about cervical cancer screening (89.6% n=43) and breast cancer screening (97% n=47) correctly. Roughly half (56%) of the respondents correctly answered the question related to mental health screening. The question most frequently answered incorrectly (64.6%) was related to early osteoporosis screening. Finally, in response to the question of whether or not the participants had either read or knew about the recommended health screening guidelines, 76% had not read or were not aware of the DMR Health Promotion Manual. Table 2 summarizes responses to knowledge questions.

Table 2. Health Screening Knowledge Questions (n=48)

Item	N	%
Annual hypertension screening
Agree	48	100%
Disagree	0	0%
Colorectal cancer screening every 5 years after age 50
Agree	48	100%
Disagree	0	0%
Mammogram every 1-2 years after age 40
Agree	47	97.7%
Disagree	1	2.1%
Pap smear every 1-3 years
Agree	43	89.6%
Disagree	5	10.4%
Thyroid screening in Down syndrome
Agree	34	75.6%
Disagree	11	24.4%
Routine mental health screening
Agree	24	53.3%
Disagree	21	46.7%
Early osteoporosis screening
Agree	16	34.0%
Disagree	31	66.0%

Perceptions of DD Training Received

In addition to specific recommended health screenings, the questionnaire included items to examine nurse practitioner perceptions about the developmental disabilities training they received prior to entering practice. When asked whether they felt their formal education adequately prepared them to meet the special needs of the developmentally disabled population, 91.7% responded that it was not adequate. Participants were also asked whether they seek outside sources of information, such as textbooks, experts or the Internet, when providing services to people with developmental disabilities. More than half (63.6%) did not look to outside sources of information for meeting the special needs of people with developmental disabilities. However, when asked whether they would attend developmental disabilities health promotion workshops if they were available in their areas, 70.8% (n=34) of respondents agreed that they would.

NP Attitudes about Health Promotion

The remainder of the survey items were dedicated to exploring and describing nurse practitioner attitudes toward developmental disabilities health screening and health promotion. When respondents were asked whether they agreed that people with developmental disabilities receive equal treatment in terms of healthcare promotion compared to the general population, 47.9% (n=23) agreed they do. Participants were asked about their feelings regarding the provision of gynecological care and sexual education for people with developmental disabilities. In response to the statement that the risk of sexual abuse accusation is higher when cervical examinations are performed on women with developmental disabilities, 29.2% felt that the risk is higher. Four respondents left this item blank. When asked whether it is important to discuss sexual health with developmentally disabled patients, all respondents agreed that it is important.

NP Attitudes about Provision of Care

Finally, three questionnaire items were dedicated to the overall picture of nurse practitioner attitudes toward the provision of care for people with developmental disabilities. In response to the statement, "I am comfortable arranging and/or performing health promotion activities for my developmentally disabled patients," 68.7% (n=33) either strongly agreed or agreed. When asked whether they enjoy treating people with developmental disabilities as much as any other patients, 22.9% (n=11) stated they do not. Three respondents did not answer this question. When asked whether they wished they could transfer some or all of their patients with developmental disabilities to other providers, 12.5% (n=6) stated they would. Four participants did not respond to this statement.

Analysis with bivariate correlations revealed that 60% (n=30) of the nurse practitioners with less than 15 years experience agreed that there is equality in healthcare. However, only 33% of nurse practitioners with more than 15 years experience (n=18) agreed that there is equality in healthcare for people with developmental disabilities. Overall, roughly half of the respondents (47.9%, n=23) agreed that people with developmental disabilities receive equal healthcare services.

DISCUSSION

Developmental disabilities nursing is a specialty in nursing practice, and people living within this spectrum of disorders have special needs. The results of this study support the concept that there are knowledge gaps in terms of the health screening needs of people with DD. The DMR recommendations for hypertension, colorectal cancer screening, and cervical cancer screening are the same in the developmental disabilities population as they are in the general population. Not surprisingly, the nurse practitioners surveyed scored nearly perfectly when asked about the recommended time frames for these health promotion activities that they would provide for all patient populations. However, thyroid dysfunction, psychiatric illnesses and osteoporosis are more common to persons with developmental disabilities and require a different schedule for screening. When questioned about these issues in terms of health screening or health promotion the results varied. For example, 24.4% of the respondents were not aware that thyroid screenings were an important part of health promotion for people with Down syndrome. In addition to thyroid screening, findings indicate that there is a knowledge gap within the sample related to mental health issues for people with developmental disabilities.

The majority (91.7%) of this sample stated that due to insufficient training, they did not feel adequately prepared to meet the health promotion needs of people with DD. Despite the lack of educational preparation in meeting the health promotion needs of this population, 63% of this sample stated they do not look for outside sources of information (texts, communication with experts, Internet, etc). Curiously, while the majority of this sample stated they do not seek outside assistance when providing services for people with developmental disabilities, 70.8% (n=34) stated they would attend health promotion workshops specific to this population if they were available in their areas. This could represent a desire to gain more insight into the care of patients with developmental disabilities but a lack of understanding of what resources are available to them.

In addition to potential gaps in knowledge and education, it may be suggested that attitudes are a factor in developmental disabilities health screening. Most of the respondents (83.3%, n=40) agreed that meeting the health promotion needs of people with DD is very challenging. In light of this information, combined with the collective statement that their developmental disabilities education was not adequate, one might expect to find nurse practitioners looking for outside information more often. To address the overall feeling of the sample in relationship to providing health promotion services to people with developmental disabilities, participants were asked whether they wished they could transfer some or all their developmentally disabled patients to other providers. A small number (12.5%, n=6) stated they would, in fact, transfer some or all of their developmentally disabled patients to other providers. Four respondents did not answer the question. This data is significant because it further illustrates the healthcare disparity that exists for the developmentally disabled population. Finally, in terms of attitudes, respondents were asked whether or not they felt people with developmental disabilities received equal treatment in terms of health promotion from their providers. Nearly half (47.9, n=23) felt people with DD do receive equal treatment. This could represent a lack of understanding about the current situation faced by people with DD in terms of their medical care. However, it is also important to note that the majority of the nurses with more than 15 years experience did not agree that there is equality in healthcare.

IMPLICATIONS FOR NURSING

The data from this study suggests that part of the reason for the current disparity in health promotion services for people with DD could be a lack of understanding regarding what health screenings are necessary and recommended for people with DD. Massachusetts DMR issued a manual for use by all healthcare providers to guide the process of health screening, but this data has shown that the majority of this sample either never heard of the manual or never read it. The manual was issued to medical doctors, but not to nurse practitioners. Therefore, an important first step could be to inform nurse practitioners that the manual does exist, that it should be available through their collaborating physicians, or that it could be obtained through the Internet via the DMR website. In addition, nurse practitioners should be encouraged to share this information with their supervising physicians, who also may not have read the manual.

Nurses from this study, as well as doctors and nurses from several other studies, have stated they received little or no education related to caring for the special needs of the developmentally disabled population. The combination of data gaps from this and other studies related to developmental disabilities health screening clearly shows a need for better education in caring for this population in nursing schools. While changes in curricula specific to meeting the health promotion need of this population at the college level could improve outcomes, attendance at post-graduate educational programs could also be beneficial. Many respondents stated a desire to attend these types of programs. Perhaps this data, combined with other similar data, might elicit an increase in the number of programs or workshops designed to enhance knowledge of developmental disabilities health screening and health promotion.

There have been limited studies related to understanding the knowledge and attitudes of nurse practitioners toward developmental disabilities health screening and health promotion. Due to the small sample size and limited geographical area, the data in this study cannot necessarily be considered generalizable to the larger population. However, there is sufficient data to promote questions related to the quality of education specific to the needs of people with developmental disabilities, the knowledge base of people providing services, and the attitudes that may be influencing healthcare disparity for this population. For example, it would be interesting to repeat this study with another group, such as medical doctors or physician's assistants, for comparison. Also, a repeat of this study in another geographical location that does not have a published manual for developmental disabilities health screening could yield valuable data that could help support the development of standardized recommendations for health screening.

LIMITATIONS AND CONCLUSION

The data from this study is exclusively self-reported information. Knowledge and attitudes are both attributes that many respondents may not accurately self-report, particularly if in their view their answer to certain questions may reflect negatively upon them. It is possible that respondents may want to present themselves as having an unbiased attitude and sufficient knowledge, even in an anonymous questionnaire. In addition, this study was limited geographically to the state of Massachusetts. Other areas of the country may have different levels of education, experience, and attitudes related to people with developmental disabilities. Therefore, the findings should be reviewed in the context of Massachusetts's nurse practitioners.

The instrument used in this study was designed specifically for this purpose and has never been empirically tested using statistical methods. Future studies utilizing this instrument could demonstrate testable reliability, but data from this study must be evaluated with the question of reliability in mind. Finally, this study was created for the purpose of utilization as a graduate thesis project, and although carefully reviewed by experienced research faculty, was conducted by a novice researcher.

This study revealed a definite need to evaluate nursing schools' curricula for content specific to the care of people with developmental disabilities. It identified gaps in knowledge of recommended health screenings for this population as well. People with developmental disabilities do not always have their health promotion needs met, and a lack of knowledge of what those needs are could be part of the problem. The DMR Health Promotion Manual was designed to be the standard for developmental disabilities health promotion, but most of the nurse practitioners from this study never read it. The data also revealed that some nurse practitioners may have attitudinal barriers that prevent recommended health screenings from occurring at the appropriate time intervals. However, it was also shown that many nurse practitioners want to provide better services for this population and would be amenable to attending workshops aimed at improving developmental disabilities health promotion knowledge.