Abstract

Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to determine the effectiveness of a caregiver educational program. This study used a quasi-experimental one-group pretest/posttest design with repeated measures to describe the outcomes of an educational program. Program participants demonstrated oral hygiene skills on each other while being scored by a trained observer, after which they completed an oral hygiene compliance survey. After three months, a follow-up included the same posttest, demonstration of oral hygiene skills, and repeat of the compliance survey. Paired-sample t-tests of oral hygiene knowledge showed a statistically significant improvement from pretest to posttest and from pretest to three-month posttest. Oral hygiene skills and compliance improved. Results demonstrate evidence that caregiver education improves knowledge, skill, and compliance in oral hygiene. Further studies are required to demonstrate the value of providing oral hygiene education and training for caregivers of individuals with intellectual and developmental disabilities.

Caregivers play a leading role in the oral health of individuals with intellectual and developmental disabilities (IDD) living in community living arrangements or intermediate care facilities. Most individuals with IDD lack the physical dexterity and/or cognitive ability to complete oral hygiene and must rely on their caregivers to assist or perform it for them (Anders & Davis, 2010). Performing oral care on a dependent person is often difficult, especially if the individual is at risk for aspiration or is unable to cooperate. Caregivers report a feeling of discomfort and/or a lack of success when performing oral hygiene because of inadequate knowledge and/or training (Faulks & Hennequin, 2000; Glassman & Miller, 2006). These deficits are often barriers to providing optimal oral care to individuals with intellectual and developmental disabilities, thus risking their health and quality of life.

Poor oral hygiene is linked to health care risks such as heart disease, diabetes, periodontal disease, and aspiration pneumonia. Individuals with IDD often have neuromuscular impairments and swallowing difficulties such as gagging and/or drooling, further complicating oral care (U.S. Department of Health and Human Services, National Institute of Health, National Institute of Dental and Craniofacial Research, 2009). Gingival disease, caries, heavy tooth wear from bruxism, and loose and missing teeth are identified concerns that interfere with the chewing ability of individuals with IDD (Cumella, Ransford, Lyons, & Burnham, 2000). These issues may cause pain, which many individuals with intellectual disability are unable to communicate. Anders and Davis (2010) identified dental problems that were previously undetected, associated with a lack of caregiver ability to assess pain in individuals with limited communication skills. This raised a concern related to quality of life when experiencing unrelenting dental pain.

One provider in Pennsylvania serving more than 400 individuals with IDD reported 35 hospitalizations in 2010 from aspiration pneumonia, with four patients requiring mechanical ventilation and a tracheotomy, thus preventing return to their community home (Home and Community Services Information System, 2010). The same provider reported three deaths in 2003–2005 from choking and 10 incidents in 2010 related to choking (Home and Community Services Information System, 2010). Providing improved oral hygiene to this vulnerable population is expected to reduce the risk of subsequent illness and death.

The purpose of this study was to examine the effect of an educational program on caregiver knowledge, skill, and compliance when providing care to individuals with intellectual and developmental disabilities. The research question was, “Will caregivers demonstrate an increase in knowledge, skill, and compliance after attending an educational program on oral hygiene care for individuals with intellectual and developmental disabilities?” For providers and organizations striving to improve the general health of these clients, exploring the outcome of this educational intervention may provide additional support for the implementation of oral hygiene education and training.

Review of the Literature

The literature related to oral hygiene education programs for caregivers of individuals with intellectual and developmental disabilities is limited. Few studies evaluating the effectiveness of educational programs on caregiver oral hygiene knowledge, skill, and compliance were found. Therefore, the search was expanded to related topics.

The majority of studies on oral health in individuals with IDD focus on reporting poorer oral hygiene when compared with people without developmental disabilities (Adiwoso & Pilot, 1999; Faulks & Hennequin, 2000; Gabre, 2000; Glassman & Miller, 2006; Jokie, Majstorović, Bakarcić, Katalinić, & Szirovicza, 2007; Lange, Cook, Dunning, Froeschle, & Kent, 2000; Shyama, Al-Mutawa, Honkala, & Honkala, 2003). Not only is oral hygiene poor in this population; it is often the most neglected activity of daily living (Faulks & Hennequin, 2000; Gabre, 2000; Glassman & Miller, 2006). According to caregivers, oral hygiene is a low priority due to time constraints when providing care to their clients (Faulks & Hennequin, 2000; Glassman & Miller, 2006). In a study assessing the oral care needs among adults with IDD, few caregivers had any training in oral care. Additionally, most caregivers expressed fear regarding the provision of appropriate care and wanted technique training to support those clients not tolerating tooth brushing (Cumella et al., 2000). It is apparent from the literature that a need for caregiver training and education in safe and effective oral hygiene exists.

Although not specifically evaluations of the effectiveness of an educational program on caregiver oral hygiene knowledge, skill, and compliance, two studies focused on the attitudes of caregivers following an educational program. Faulks and Hennequin (2000) conducted a program evaluation to determine if an educational program to improve oral care to 140 individuals with special needs was effective in changing caregivers' attitudes and behaviors. Postprogram tooth brushing, as measured by questionnaires, increased significantly (p < .05). In a Swedish study, using a cross-sectional design, with 2,901 participants, an educational intervention improved caregiver attitudes toward performing oral care for three years (Paulsson, Soderfeldt, Fridlund, & Nederfors, 2001). These studies demonstrate the positive effect of an educational program on caregiver oral care attitudes and behaviors. Further research is needed to evaluate the significance of such effects.

Additional health risks associated with poor oral hygiene have been identified for individuals with disabilities. A study in Croatia comparing healthy children with children with disabilities (Jokie et al., 2007) concluded that inadequate tooth brushing increases risk factors for dental caries in the latter. In their review of the literature, Dyment and Casa (1999) found that individuals fed by tube are linked to poor oral hygiene because of the lack of salivary flow that occurs from not eating by mouth. These individuals often have no gag reflex and are at risk for aspiration pneumonia during oral care. In a case study published by Prahlow, Prahlow, Rakow, and Prahlow (2009), a 47-year-old with cerebral palsy and a gastrostomy tube presented in the emergency room with respiratory distress and died as a result of asphyxia. It was determined to be caused by inspissated oral secretions secondary to poor oral hygiene as a result of the neglect of the residential facility.

Glassman, Miller, Wozniak, and Jones (1994) developed and piloted a preventive dentistry training program for caregivers of persons with disabilities in community settings to determine the effectiveness of the educational program. This training program was identified as the only program found in the literature specifically developed for caregivers responsible for the oral care of individuals with intellectual and developmental disabilities in community residential homes. A pilot study determined that learning did occur as a result of the training program (Glassman et al., 1994). Another study, by Glassman and Miller (2006), with 11 individuals with developmental disabilities demonstrated a decrease in plaque scores and an increase in the duration of tooth brushing during observation after implementing the same training program.

A small number of studies evaluated the effect of supervision during tooth brushing using the plaque index to determine the effectiveness of brushing. The plaque index is an objective way to measure the visible buildup of plaque on three surfaces of five designated teeth from different regions of the mouth (Butler, Morejon, & Low, 1996). Shyama et al. (2003) studied 112 adolescents with Down syndrome in Kuwait and observed that supervised tooth brushing after caregiver education produced a decrease in mean plaque scores. Lange et al. (2000) also found that supervision during oral hygiene was critical to improving oral hygiene as compared with that of a control group without supervision. Despite the reported effectiveness of caregiver supervision on oral hygiene, it is not always possible to continuously supervise clients in small residential settings.

In summary, the literature demonstrates that individuals with IDD have poorer oral hygiene when compared with individuals without disabilities. A number of studies confirm that individuals with IDD have not been receiving adequate oral care on a regular basis (Adiwoso & Pilot, 1999; Dyment & Casa, 1999; Faulks & Hennequin, 2000; Lange et al., 2000; Shyama et al., 2003). The most commonly cited beneficial intervention for delivering proper oral hygiene consisted of proper tooth brushing delivered by a caregiver at least daily (Adiwoso & Pilot, 1999; Dyment & Casa, 1999; Faulks & Hennequin, 2000; Lange et al., 2000; Shyama et al., 2003). Only one training program was identified as having an impact on caregiver knowledge, duration of tooth brushing, and plaque reduction for individuals with developmental disabilities.

The plaque index and periodontal probing have been commonly used to evaluate outcomes of oral care programs. Zigmond and colleagues (2006), in a study measuring periodontal status in Down syndrome, found it difficult to assess the effect of an educational program using these measures without baseline clinical measurements. Many studies use this method to evaluate oral hygiene outcomes in individuals with IDD. When caregivers providing oral care were properly trained and supervised there was an associated plaque reduction. However, questions remain regarding the long-term effectiveness of educational programs to improve the oral hygiene of individuals with intellectual and developmental disabilities.

Method

Participants

The participants for this study were caregivers 18 years of age or older working in community living arrangements or an intermediate care facility where they were expected to provide oral care to individuals with IDD. Requirements to become a caregiver include a high school diploma, two references, and child abuse and criminal history clearances. All training is provided by the organization after one is hired. Before caregivers go into the residential setting they attend a week of orientation that includes CPR, basic first aid, fire safety, vital signs, consumers' rights, and abuse training. At the time of this study, the organization from which the participants were recruited employed approximately 300 caregivers in northeast Pennsylvania, delivering care in six intermediate care facilities and 65 community living arrangement programs. The organization is split by regional administrative offices, dividing training to caregivers between the southern and northern regions. Therefore, the educational program was held on two different dates, one in each regional location to allow caregiver participation from each region. For this study, all 300 caregivers were contacted and offered the opportunity to participate. Enrollment was limited to 60 caregivers who met the inclusion criteria and agreed to participate in the study.

Inclusion criteria

  1. 18 years or older.

  2. Employed by the organization.

  3. Assigned to work in a community living arrangement or an intermediate care facility within the organization.

  4. Responsible for providing oral hygiene to individuals with intellectual and developmental disabilities.

Exclusion criterion

Temporary or provisional employment status.

Design

A one-group pretest/posttest design was used with repeated measures of caregiver oral hygiene knowledge before and after an educational program and again at three months postintervention. The caregiver educational program was the independent variable, and caregiver oral hygiene knowledge, skill, and compliance were the dependent variables.

Procedures

This study was approved by institutional review boards at Robert Morris University and at the participating organization. Once the study was approved, participants were recruited. Caregivers were recruited by a flyer that was sent to each residential program promoting the educational program for purposes of research. As part of their continued requirements for employment, caregivers are required to attend a monthly training session of their choice; therefore, their participation in the study helped them meet this training requirement. Participants were provided with details about the study via informed consent. Those who wished to participate signed the informed consent prior to participating in the educational program.

A coded demographic questionnaire and a pretest were completed prior to the start of the educational program. After completing the demographic questionnaire, all participants were allotted 30 minutes to complete the pretest. The pretest provided baseline data on caregiver oral care knowledge. Once all the pretests were collected, the educational program was presented.

Educational Program

The educational program used, “Overcoming Obstacles to Dental Health: A Training Program for Caregivers of People with Disabilities,” was the only program identified in the literature designed specifically for this setting and population (Glassman, Miller, Wozniak, & Gillien, 1998). Permission was given to use the program with purchase from the University of the Pacific School of Dentistry. The original training program was developed and produced as an outgrowth of the “Northern California Rural Dental Project for Persons with Disabilities” and consisted of a complete competency-based oral hygiene program with an instructor training manual, workbook, pretest, and posttest (Glassman et al., 1998). The program was designed for caregivers providing oral care to individuals with developmental disabilities in residential settings. It was important to have a program specific to this population that included topics on the proper positioning and adaptation of toothbrushes and flossing tools to improve the process of oral care provided to individuals with developmental disabilities.

For this current study the oral hygiene educational program was adapted to four hours in order to present the program in one day. Based on the assessment of each chapter, chapters 1–6 in the program covered topics associated with oral health, specific skills, and tools to overcome challenges of providing oral care. The content was taught by a dental hygienist who is also the director of the dental hygiene program at a local community college. In preparation for the educational program one of the investigators met with the director on two occasions to review the training manual and plan the presentation.

At the conclusion of the presentation, there was a live demonstration of tooth brushing, flossing, and suctioning by the dental hygienist presenting the program based on the purchased Oral Hygiene Skill Survey. Three suctioning skills were added and demonstrated on a mannequin with a portable suction machine. After participants were shown how to perform oral hygiene they were split into two groups. Group 1 was given the posttest and allotted 30 minutes to complete it. The other group was paired off to demonstrate oral care on another live caregiver while being observed and scored by a dental hygienist or nurse who had received training to serve as an evaluator. After 30 minutes the groups were rotated to allow each group to complete the posttest, demonstrate oral care skills, and answer the compliance survey. Group 2 was not allotted time to practice prior to demonstration. Compliance questions were located at the end of the Oral Hygiene Skill Survey and answered by participants after they demonstrated their oral hygiene skills.

Participants were paid their regular hourly wage for the hours they spent attending the educational program, taking the pretest and posttests, and completing the Oral Hygiene Skill Survey. The total cost for the provider to train the participants was approximately $3,000. The provider budgets two training hours a month for each caregiver to meet the licensing regulations of 24 training hours per year. This program offered a total of six hours, which helped caregivers meet this requirement. Participants were given a certificate at the end of the program. They could add their name to the certificate and submit it to the organization's training department for training hours. A flyer was given to each participant at the end of the program with two dates, one for each region, to return in three months to complete the postintervention follow-up testing and evaluation of skills.

In an attempt to increase the number of participants returning at the three-month evaluation a flyer was sent two weeks prior to the evaluation date to each residential program. An additional certificate for one hour of training was given to each participant for returning three months later to take the posttest and complete the Oral Hygiene Skill Survey.

There was an additional incentive offered to encourage participants to return at three months. Each participant could enter his or her name into a drawing at the completion of the study. Two electric toothbrushes, donated by the community college, were awarded to two participants who elected to enter their name into the drawing. Caregivers who did not participate or those who participated and failed to achieve competency were not subject to any negative consequences such as termination, warnings, or transfers.

Knowledge Instrument

The pretest/posttest purchased with the educational program was adapted to reflect the content covered in four hours. The original 60-question test was reduced by 20 questions to eliminate questions from the remaining chapters not covered in the program. This created a 40-question test based on the content covered in the program. This modified exam was used to assess caregiver knowledge. The exam was administered at three points: preeducational program, posteducational program, and three months posteducational program. Each test score was graded by the percent correct converted to a 100-point scale. Scores ranged from 48% to 98%. Sample test questions are in the  Appendix.

Oral Skill and Compliance Instrument

The Oral Hygiene Skill Survey is used to collect data on oral care skills (Glassman et al., 1998). This survey was provided as part of the purchased educational program materials. The skill survey included 12 steps for tooth brushing and nine steps for flossing technique. The tool was adapted to eliminate four tooth brushing steps due to the inability to perform them in a training setting, and three steps were added related to suctioning technique. This information was added because suctioning was identified as a skill required for caregivers performing oral care on clients with swallowing difficulties or tube feeds and was a role expectation for caregivers. The observers scored each skill on a scale from 0 to 2, where 0  =  skill could not be performed at all, 1  =  performed skill but required verbal assistance from the observer, and 2  =  skill was performed proficiently and without any verbal assistance. Four nurses from the provider agency and two dental hygienists were available to observe and score the participants' oral care skills. Observers were not calibrated prior to the study; however, scoring observations were reviewed with each observer by one of the researchers and the dental hygienist teaching the program prior to performing any oral skill observations. An interrater reliability check was not run. Seven questions were also added to measure compliance. Questions were developed to determine reasons why caregivers omit oral care, such as lack of time, skill, staff, or equipment; forgetting; avoiding performance; and complications related to uncooperative individuals. Permission was given by the authors to modify the tool.

Glassman et al. (1994), the authors of the program materials, state that the instrument demonstrated internal validity by the ability of the participants to improve their test scores after attending the training program in comparison to the level of knowledge indicated on pretest scores. According to Glassman et al. (1994), the improvement in scores on the pretest and posttest were analyzed by location of the testing and by below- and above-average scores on the pretest. The test scores were analyzed using a matched-paired t-test, and it was found to be significant < .001 for the entire group as well as each subgroup measured (Glassman et al., 1994). In addition, “field testing has shown that training with these materials can increase caregiver participation in preventative dentistry procedures, increasing tooth brushing activities of the individuals being served, and improve oral hygiene measures in these individuals” (Glassman & Miller, 2006, p. 42). The small sample and other variables may affect the evidence of validity.

Glassman et al. (1994) indicate that external validity was confirmed by the ability to replicate the results with two separate groups in a pilot study done at two different locations in Northern California. The education program was implemented in another study with 11 individuals with developmental disabilities and demonstrated a decrease in plaque scores and an increase in tooth brushing by observed caregivers (Glassman & Miller, 2006). This provides additional evidence of program reliability. However, generalizability is limited by the small sample size.

The program materials were written and developed by dentists providing dental care to this population in California. The New York State Office of Mental Retardation and Developmental Disabilities task force purchased the rights to “Overcoming Obstacles” during a statewide initiative to improve oral care for people with intellectual and developmental disabilities in the state (Goldstein, 2006).

Analysis

Demographic, pretest, posttest, oral hygiene skills, and compliance data were entered into SPSS 17.0 for Windows. Descriptive and inferential statistics were used to analyze the data. Percentage and frequency were used to analyze demographic, skill, and compliance data. The t-test was used to determine whether a statistically significant difference in the mean scores from the pretest, posttest, and three-month follow-up existed.

Sociodemographic Profile

From the 300 caregivers notified of the oral hygiene educational program, 52 caregivers agreed to participate in the study. The population was predominantly female (n  =  45; see Table 1), with 28 (53.8%) White and 17 (32.7%) Black, representing a slight demographic deviation for the region, with 64.59% White and 26.93% Black (CLRsearch.com, 2010).

Table 1

Participant Demographics (N  =  52)

Participant Demographics (N  =  52)
Participant Demographics (N  =  52)

Knowledge

Of the 52 participants who completed the pretest, only 50 participants attended the entire program and took the posttest. The test results of these 50 participants demonstrated a statistically significant increase in scores: t  =  8.231 (df 49), p  =  .000. The pretest mean (and standard deviation) was 77.8 (10.6), with an end-of-intervention posttest mean of 88.2 (10.5). The test was repeated again at three months postintervention, with 29 of the original 50 participants repeating the test to completion. Analysis via t-test was performed between pre- and posttest and then between posttest and three-month follow-up. As with the original 50 participants, there was a significant increase in knowledge from pre- to posttest: t  =  8.178 (df 28), p < .001. Scores showed no significant differences between posttest and three-month follow-up: t  = 1.983 (df 28), p  =  .057. Means (and standard deviations) at each time point were 77.6 (10.7), 88.3 (11.2), and 85.6 (8.1), respectively. Pre- and posttest comparison was complete for the initial 50 participants. Analysis was also performed for the 29 participants who completed all testing at each of the three time points to provide a more valid basis for comparison given the potential implications for the care of vulnerable populations (see Table 2).

Table 2

Participant Test Scores

Participant Test Scores
Participant Test Scores

Oral Hygiene Skill Survey

Demonstration of competence was measured using the Oral Hygiene Skill Survey, noting participant ability to properly brush and floss another participant's teeth. An evaluation of oral suction was added to the survey, and the additional skill was evaluated. Competence was evaluated immediately after the program of instruction and demonstration as well as three months later (see Tables 35). The vast majority of participants, after the educational program, were able to complete each tooth brushing step independently or with a verbal prompt by the observer. There was an increase in the percentage of independent step completion three months later. It was found that only 40.8% of participants could operate the suction machine postintervention, but 100% demonstrated competence at the three-month evaluation. Participants indicated learning in six of the nine flossing steps. Overall flossing steps were completed either independently or partially 73.3%–100% of the time postintervention and three months later. Wrapping the floss in a c-shape around the tooth proved to be the greatest challenge, with 26.7% of participants not able to complete this step at the three-month observation. This may indicate the need to evaluate this flossing technique for caregivers. Participants reported that this skill was difficult to perform on other individuals.

Table 3

Tooth Brushing

Tooth Brushing
Tooth Brushing
Table 4

Flossing

Flossing
Flossing
Table 5

Suctioning

Suctioning
Suctioning

Compliance

A compliance survey was completed to assess why caregivers omit oral care (see Table 6). The most frequently reported reason for omitting oral care had to do with uncooperative individuals. This remained unchanged at the three-month follow-up. These data support previous research relating to lack of cooperation or the inability to cooperate by clients as a significant barrier to caregiver compliance. There was an overall decrease in omission of oral care due to lack of time, staff, and equipment and simply forgetting from initial evaluation to postintervention to three-month evaluation. The analysis was complicated by attrition of research participants and incomplete surveys at the three-month follow-up. The data may not reflect the total study population characteristics because responses are from participants willing to complete the surveys.

Table 6

Compliance Responses

Compliance Responses
Compliance Responses

Discussion

In this study, pretest/posttest data were collected at three time points. Oral hygiene skill and compliance data were collected twice: postprogram and three months later. The significant increase in test scores from pre- to postintervention indicates an increase in knowledge. The three-month follow-up scores indicate that there was retention of knowledge. It is difficult to validate the accuracy of these findings due to the sample size and attrition rate.

Since the educational program was presented in two regions on different dates, the data were initially separated to measure test scores by region. This also provided the opportunity to evaluate external validity by replicating the effect in two regions. The increase in scores on the posttest helps to provide some evidence of external validity, but the small sample size limits generalizability. Reliability of the pretest to posttest, estimated as internal consistency, was tested by Cronbach's alpha, showing 0.656. The small sample size may not accurately reflect the true reliability of the test instrument. This modified program was not piloted before its implementation. All of the questions on the tests were developed by four dentists who consulted with case managers, facility directors, direct care staff, and parents of persons with disabilities to validate the content (Glassman et al., 1994).

The Oral Hygiene Skill Survey was evaluated for internal consistency, with a Cronbach's alpha of 0.838 indicating reliability. However, reliability is difficult to determine based on the sample size. Using the Oral Hygiene Skill Survey, tooth brushing and suctioning skills met the expected skill level immediately following the educational program and three months later. Tooth brushing and suctioning skills improved between the first and second observations, exceeding our expectations. Factors associated with this increase in competence with suctioning and independent completion of skills at three months should be investigated; these may have been an effect of the attrition rate, with those who returned to complete this portion representing participants who were more motivated to demonstrate increased competency.

Flossing was identified as difficult to provide for another individual. Flossing skills were completed independently or with some assistance by caregivers 73.3%–100% of the time. However, there were steps in the flossing process that participants had difficulty performing. Only 43.3%–57.1% wrapped floss in a c-shape around the tooth independently. This has implications for the oral care of a dependent person, particularly those who can be uncooperative. Caregivers may incorrectly perform or omit that part of oral care if it is too difficult to execute. There are devices on the market that could simplify flossing for caregivers, and further investigation of flossing options and compliance issues is worth evaluating.

Thirty participants completed the three-month skills observation, creating an attrition rate of 61%, with a possible type II error. This attrition rate may be due to turnover, staff shortages, vacations, illness, or scheduling issues. Caregivers who did not participate in the follow-up may have felt confident in their oral care skills, may have found the program not important, may have been afraid to reveal a lack of knowledge and skill, or may have been unable to attend on the scheduled dates. In the field of intellectual and developmental disabilities there are chronic staffing issues, and this may be reflected in the attrition rate of the study. However, the data obtained may reflect participants more willing to participate and not necessarily represent the true characteristics of the population, thus threatening the validity of the study.

An encouraging finding was that the data support the retention of knowledge at the three-month posttest. After three months, participants still showed a statistically significant improvement on the posttest when compared with the pretest—t  =  7.819 (df 32), p < .001—providing evidence that they were able to retain information received at the oral hygiene education program. Although test scores declined at the three-month point when compared with the immediate postintervention scores, they were not statistically different. Due to sample size it is not possible to know whether this demonstrates a loss of knowledge over time, indicating that oral hygiene knowledge, assessment of skills, and compliance should be revisited on a regular basis.

It is well documented in the literature that oral hygiene is important to the well-being of individuals with intellectual and developmental disabilities. For those individuals dependent on their caregiver to perform such care, knowledge acquired in an educational program is relevant to the quality of life for such individuals. Interventions that have positive effects on the quality of caregiver skill should be determined and implemented. Trained caregivers may identify oral care concerns quickly so that treatment is provided in a timely manner to prevent painful consequences or chewing difficulties. Caregivers with improved oral care compliance and skill may decrease or prevent plaque, periodontal disease, and subsequent illness and reduce the risks of choking and aspiration pneumonia in individuals with intellectual and developmental disabilities. Residential facilities in Pennsylvania are licensed and inspected by the Department of Health or Department of Public Welfare. These governmental agencies, based on the evidence of this and other studies, may consider revision of regulations to include requirements for caregiver training and provision of routine oral care to individuals with intellectual and developmental disabilities. Requiring caregiver training and individual oral care protocols would improve the overall health care of vulnerable populations.

Limitations

This study has a number of limitations. The sample size was small and not calculated due to the design of the study, resulting in a potential type II error. It was completed within one organization with a convenience sample of participants, preventing the implementation of a randomized control study. Participants self-selected and may represent bias, for caregivers who participated were more willing to seek information and training than caregivers who did not participate and may have a different set of characteristics not reflected in the study. Additionally, the beliefs and attitudes of participants were not collected prior to the study. The program initially recruited 52 participants, with only 32 returning for the three-month postevaluation. Therefore, the data from this study may not accurately represent the total population of caregivers. Participants who left the educational session prior to completion of the evaluation tools or did not return three months later affect the quality of the outcome data obtained. Additional research is needed to examine the program with larger sample sizes.

Implications/Conclusion

This study provides additional information about a published program's materials for use with caregivers of dependent individuals. It also provides regulators, administrators, trainers, and nurses serving individuals with intellectual and developmental disabilities evidence-based information regarding the benefits of an educational program. Improving the knowledge, skill, and compliance of caregivers could positively impact the care of individuals with intellectual and developmental disabilities, and this program may serve as a model for future efforts.

Oral hygiene is linked to the general health of individuals; therefore, this study supports the potential benefits from an education program on oral care for those diagnosed with intellectual and developmental disabilities. Providers serving such individuals could use this evidence to support the development of oral hygiene policies and procedures specific to training and oral care performance. The program could be presented to caregivers during orientation to ensure that they have the knowledge and skills to perform oral care prior to beginning their work with individuals with intellectual and developmental disabilities. Implementing annual caregiver oral care skill assessment and observation would provide information about caregiver competence performing oral care and indicate potential needs for additional training.

Flossing technique needs further evaluation to determine best practice for flossing for individuals with intellectual and developmental disabilities. Soft-picks and flossing tools may be easier to handle, and the use of these devices should be investigated. Individuals with intellectual and developmental disabilities have difficulty keeping their mouth open, and flossing requires skill. There is some risk to the caregiver, such as being bitten, related to the completion of this task, which may interfere with the quality of care. Tools designed to ease flossing and decrease risk to compliance should be investigated.

It would be important to evaluate caregiver knowledge, skill, and compliance beyond three months to determine the long-term value of the program. Despite previous research that indicated mixed results following oral hygiene education, the findings in this study provide support for caregiver education and the retention of caregiver skills over time. Replication of this study and its use of the education program materials may support the efficacy of this program of instruction. There were no other studies identified specific to this setting evaluating the effects of a caregiver educational program beyond three months. Thus, retention of knowledge, skill, and compliance may be evident six months to a year later, providing relevant information as to the effectiveness of a program of caregiver education. However, turnover is a chronic issue among providers in the field of intellectual and developmental disabilities, making this difficult to evaluate. In this study, there were a significant number of participants with less than two years of experience, highlighting the complications in the acquisition and maintenance of skills among caregivers.

Additional research using randomized control trials to evaluate oral care using the plaque index for individuals with intellectual and developmental disabilities performed by trained caregivers would strengthen the evidence related to educational interventions for caregivers. A study evaluating the effects of oral hygiene education on periodontal disease, aspiration pneumonia, or choking incidents in vulnerable populations would also provide valuable information regarding the health and safety of such individuals.

We thank Terry Sigal Greene, director of the Northampton Community College Dental Hygiene Program, for her work adapting the educational program into a power point presentation, presenting the program, and observing caregivers in oral care skills and Deborah Gschrey, dental hygienist from Northampton Community College Dental Hygiene Program, for observing and scoring participants on the oral hygiene skills survey. A special thanks goes to the caregivers and nurses that participated in the study and to the provider agency for graciously supporting the educational program and compensating caregivers for their participation in the study.

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Appendix. Pre- and Posttest Sample Questions

  • 1. If you are assisting an individual who understands how to brush teeth but is physically unable to do it because he cannot grip the toothbrush, a good method of helping him participate in his own care is to:

  • a. show him pictures of proper tooth brushing.

  • b. work out a reward system.

  • c. build up the tooth brush handle.

  • d. demonstrate proper brushing technique.

  • 2. Whenever someone you are assisting is told to brush her teeth, she refuses to open her mouth. This is an example of what kind of obstacle to tooth brushing?

  • a. a physical obstacle.

  • b. a behavioral obstacle.

  • c. an informational obstacle.

  • 3. Mary always brushes her front teeth well, but she never tries to brush on the inside (tongue side) of her teeth. This is an example of:

  • a. a physical obstacle.

  • b. a behavioral obstacle.

  • c. an informational obstacle.

  • 4. You are assisting someone who is not physically able to brush her teeth, but she will accept your help. You should:

  • a. use behavioral techniques to change her behavior.

  • b. use partial participation where you do the parts she cannot do.

  • c. show her the proper way to brush.

  • d. offer her rewards for brushing.

  • 5. Some common signs of a healthy mouth include:

  • a. gums bleed easily when brushed with a soft brush.

  • b. loose tooth or teeth that wiggle after eating peanuts.

  • c. pink, tight-looking gums that fit closely to the tooth.

  • d. there are no common signs of a health mouth.

  • 6. When you look in your mouth and see red, swollen gums, which bleed easily when you brush, you are most likely seeing:

  • a. healthy gums.

  • b. unhealthy gums.

  • c. the results of brushing too hard with a soft brush.

  • d. healthy gums after eating strawberries.

Source: Glassman et al., 1998.

Author notes

Editor-in-Charge: Steven J. Taylor

Authors:

Nancy A. Fickert (e-mail: nfickert@lifepath.org), LifePath, Allentown, PA 18103, USA; Diana Ross, University of Pittsburgh.