Home-based oral health program for adults with intellectual disabilities: An intervention study

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Original Article

Home-based oral health program for adults with intellectual disabilities: An intervention study

Blanca Lorena Rojo, MSc

^a

, Sarah Brown, MSc

^a

, Hannah Barnes, BSc

^b

, Jacqui Allen, MD

^c

, Anna Miles, PhD

^a^,^*

aSpeech Science, The University of Auckland, New Zealand

bSpectrum Care Trust, New Zealand

cSurgery, The University of Auckland, New Zealand

a r t i c l e i n f o

Article history:

Received 9 May 2023 Received in revised form 1 August 2023 Accepted 2 August 2023

Keywords:

Oral health education Intellectual disabilities Dysphagia

Oral hygiene

a b s t r a c t

Background:Poor oral health is common in adults with intellectual disabilities leading to risk of mouth and lung infections. Yet, little is known about the beneﬁts of preventative oral health programs.

Objective/hypothesis: This prospective longitudinal experimental mixed methods study evaluated the efﬁcacy of an oral health program aimed at improving knowledge and behaviours in adults with intellectual disabilities living in supported housing.

Methods:A 90-min training session was provided to residents and their staff at 12 houses (56 residents;

67 staff). Follow-up training sessions (at 1 week, 1,2,3 months) were tailored to the learning abilities, behavioural/physical challenges, and independence of residents. Outcome measures were collected pre, 1, 2 and 3 months (n ¼36): dental exam, plaque index, gingival signs, tongue coating index and behavioural rating scale. At 3 months, support workers (n¼10) and residents (n¼19) were interviewed.

Residents’interviews were supported by Talking Mats®.

Results:Most residents (94%) required support for oral cares; with 63% fully dependant on their support workers. 24 (63%) residents had significantly improved plaque scores at 3 months (p<.001). Resident interviews were restricted by communication competency but supported interviews indicated positive responses to 3-sided toothbrush 91%, interdental brush/flosser 60%, and mouthwash 100%. Support worker interviews revealed perceived health and social benefits including fresher breath and benefits of routines.

Conclusions: Oral health programs for adults with intellectual disabilities living in supported housing are well received by staff and residents, leading to changes in oral care routines and measurable changes in oral health.

Oral health refers to the state of being free of gum disease, dental decay, or tooth loss. Oral health is achieved when an individual can maintain the ability to eat and speak without compromised health and social wellbeing.^1,2Poor oral health is common in people with intellectual disabilities^3,4as they have difﬁculties independently completing oral cares and a poor un- derstanding of the importance of oral hygiene, hydration and nutrition^5,6 alongside comorbidities, polypharmacy,⁷ and

congenital abnormalities of the oral cavity.⁸Poor oral health has serious consequences with documented associations with poor nutrition, increased risk of respiratory infections, worsening systemic diseases and poor quality of life.^4,9 Special Needs Dentistry is a relatively new specialty focused on the care for people with mental or physical limitations and/or compromised medical conditions.¹⁰Dental care in New Zealand is fully funded for people with intellectual disabilities with an estimation of 20 health board funded specialist dental professionals nationally.¹⁰ The largest hospital based dental facility resides in Auckland, providing dental care for a population of at least 1.5 million re- cipients (>5th of the population).¹¹Funding is, however, limited to these health care provisions and tends to focus on basic pain

*Corresponding author. The University of Auckland, Waipapa Taumata Rau, Private Bag 92019, Auckland, 1142, New Zealand.

E-mail address:[email protected](A. Miles).

Contents lists available atScienceDirect

Disability and Health Journal

j o u r n a l h o m e p a g e : w w w . d i s a b i l i t y a n d h e a l t h j n l . c o m

https://doi.org/10.1016/j.dhjo.2023.101516

Please cite this article as: B.L. Rojo, S. Brown, H. Barneset al., Home-based oral health program for adults with intellectual disabilities: An intervention study, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2023.101516

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relief rather than preventative dental care¹¹ with most people with intellectual disability also needing to be seen by generalist dentists.

Physical, cognitive and behavioural challenges are common obstacles faced by dentists and carers. Oral health status of people with intellectual disabilities is often dependent on their care workers’oral health knowledge and skills in managing the physical, cognitive and behavioural challenges.¹² Oral health, in this vulnerable population, therefore, requires a multidisciplinary approach. While the direct support of an oral health specialist is ideal, oral health is often left to the responsibility of nursing staff, speech-language therapists working with adults with dysphagia (swallowing difﬁculties) and support workers.^13,14

There is little evidence for oral health programs in adults with intellectual disabilities. A 2019 Cochrane Review found 34 relevant publications but studies were mostly small with high or unclear risk of bias. They concluded that training carers may improve oral health knowledge and that regular dental visits and carer super- vised toothbrushing may reduce gingival inflammation and plaque.¹⁵Faulks and colleagues found increased carer confidence in oral cares after the introduction of a oral health program across a range of centres for people with intellectual disabilities.¹⁶May and colleagues explored the use of visual aids to enhance oral cares cooperation in 14 boys with autism with positive effect.¹⁷Strategies have included access to dental/oral health specialists, hands-on practical training, regular follow-up sessions, carer stability, use of photographs of individual's teeth and individualised care provided by one key carer.¹⁵The aim of our study was to explore the benefits of an oral health program in a group of adults with intellectual disabilities living in supported living. Our prospective mixed methods longitudinal study was designed to investigate oral health outcomes as well as staff and resident perceptions of an oral health program. Our hypotheses were that a 12-week oral health program would: be well received by support workers and residents; lead to improved oral care routines; and lead to improvement in plaque accumulation.

Methods

This project was approved by the University of Auckland Human Participants Ethics Committee (UAHPEC #022177).

Participants

Twelve of 95 residential houses in Spectrum Care were selected based on geographical location (based on locality to the researcher for visits) to participate in an oral health program. House managers were contacted by email with a follow-up telephone call. All 12 houses consented, none refused to participate. Over a two-year recruitment phase, the project recruited 56 residents with intellectual±physical disabilities of varied levels of severity (51%

male; Mean age 36 years, range 20e65 years) out of the 450 residents supported at the time. Sixty-seven support staff were recruited and consented to participate in the project, none refused.

Support staff receive in-house training but are not trained health professionals. All but one resident in the 12 homes consented to participate, 2 residents died before ﬁnal oral assessments in the program, 17 residents did not complete the third monthly outcome measures due to a national mandatory self-isolation ruling causing disruptions in data collection during Covid-19 Lock Down in New Zealand. Supplementary Materials 1 provides a visual explanation of the oral health program from the recruitment process to the last interview.

Oral health education program

The 12-week oral health intervention began with a 90-min oral health hands-on group training session provided to support workers and residents at each of the 12 homes. All residents were provided with new dental cleaning equipment including a three- sided toothbrush, an interdental brush, and a bottle of chlorhexidine mouth rinse. At each home, initial training was followed by additional 60-min group sessions (at 1 week, 1,2,3 months) which were adapted and tailored to the learning abilities, behavioural/

physical challenges, and independence of residents in that specific home. The training was developed based on successful strategies reported in the literature and focused on oral hygiene techniques, and oral disease preventative strategies through dietary sugges- tions and early oral disease identification techniques. All training was provided by an independent trained dentist and an onsite speech-language therapist to provide communication supports with familiar residents. Caregivers were encouraged to practice oral hygiene techniques, use oral cleansing tools such as three-sided toothbrushes, interdental brushes, and floss picks on typodont models and on volunteer residents. Follow-up sessions included observations of oral cares followed by trouble-shooting or feedback and was undertaken by the same researchers (Fig. 1). Supplemen- tary Materials 2 provides details of the oral health program.

Outcome measures

Mini Nutritional Assessment (MNA) was completed by staff and consists of six questions regarding food intake frequency, cessation history, levels of physical mobility of the individual and body mass index (BMI).¹⁸Eighteen dental/oral exam items were created by the researchers to allow a better categorization of the oral status and oral care dependency levels of each resident. This questionnaire allowed the training sessions to be tailored to the educational and physical support needs of each resident. Plaque index was based on a modified Silness and L€oe plaque index.¹⁹ An Adapted Venham behavioural rating scale²⁰was used to depict 6 variations of the probable behavioural manifestations of a resident's emotional response during assessments and oral cares (where 0 ¼ total cooperation to 5¼no cooperation/not opening mouth). Supple- mentary Materials 3 provides details of all outcome measures. Oral exam and behavioural ratings were assessed at baseline and 1 month, 2 months, and 3 months post-training by the trained dentist who was providing the intervention. Videos and photographs were taken during each exam. Inter-rater reliability for plaque, gingival signs, and tongue coating indices were confirmed by blinded second raters. Fifteen random videos with removal of any identifiable features were distributed at random to second raters (41% of samples); all of whom were trained dentists. Raters were unaware of residents' medical history or the timing of the video. Blinded raters were asked to score plaque presence, tongue coating, comment on gingival signs and rate over all hygiene as good, fair, or poor based on the scoring criteria mentioned. Inter- rater agreement was 100% between second raters and the trainer dentist providing the intervention.

Interviews

After the 3-month oral health assessment data collection, staff and residents were invited to participate in an interview regarding their perceptions of the oral health program. The interviews were conducted by a research assistant independent to the oral health education program. The independent researcher was a speech- language therapy student trained in total communication modalities and Talking Mats®.²¹The interviewer visited the residents in

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their own dwellings and used a total communication approach using sign and body language, pictures, and words to aid in building a conversation. All interviews were conducted 1:1 or 1:2 ratio with the independent researcher and a staff member present to support the resident during the interviews. Talking Mats®was offered as a support for all residents during the interview process. The Talking Mats®were placed on a table in front of the resident along with picture cards identifying the topic of the question. The resident was then prompted to answer the question by placing the picture card on the Talking Mats®in one of three sections identiﬁed on the mat by a different picture symbolising liked (thumbs up), disliked (thumbs down), and unsure (confused look on the cartoon).

Resident interviews were video recorded and a photo of the Talking Mats®(Fig. 2) was taken as well to record the types of communication modalities used per resident to complete each interview.

Resident interviews were qualitatively analysed for response/re- action and responses were categorised intopositive/neutral,negative,did not use,unclear response, andresident was not asked about the topic. The interviews that were supported using the Talking Mats® were reviewed using the Effectiveness Framework of Functional Communication by Talking Mats®Ltd.²¹The framework provided guidance to evaluate the response based on the engage- ment of the resident with the interviewer, the residents' under- standing of the interviewer's language, as well as the relevance of Fig. 1.Visual summary of Oral Health Program.

Fig. 2.Example of Resident Interview using Talking Mats.

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the residents' responses to the topic of each question being asked.

Two raters scored the functional communication with the Talking Mats®as effective if scores of 21 and above were given. Consensus was gained on all disagreements. Staff interviews were conducted separately and in person. Interviews started by asking staff to rank elements of the oral health program from positive to negative. This was followed by a semi-structured interview asking for their perspectives on the program. Interviews were audio-recorded and transcribed verbatim.

Data analysis

All quantitative data were stored and explored with descriptive statistics and charts in Excel (Microsoft Excel). Statistical analyses were conducted using IBM SPSS software Version 27. Statistical differences between plaque scores at baseline and plaque scores at three months were assessed using a Wilcoxon Signed Rank Test.

Correlations were explored between dental and demographic var- iables using Spearman's Rank Correlation, Chi-squared test and Kendall Tau depending on the data type; p<.05 was considered signiﬁcant. Staff interviews were analysed using the eight steps of Qualitative Content Analysis (QCA)²²to support the research group in extracting meaning from the qualitative data. Major themes were developed by the independent interviewer and then agreed by consensus by the research team. Themes with illustrative quotes were reported. Illustrative quotes extracted from conversations between the author, staff, and residents as well as anecdotal events were documented to be later used to enrich the qualitative data and were recorded asﬁeldnotes.

Results

Full outcome data were completed for 36 residents; 18 (32%) were wheelchair bound; 26 (46%) were fully depended on support staff for feeding, 16 (28%) required foods to be pureed and 8 (14%) required the use of thickening agents for drinks. 10 residents scored

“risk of malnutrition” or “malnourished” on the Mini Nutrition Assessment; and 48 (85%) were taking at least one medication that could cause xerostomia. Thirty-two (57%) residents were non- verbal, 12 (21%) were able to communicate with assistance and 13 (23%) were able to communicate verbally. See Supplementary Materials 3 for detailed resident demographics. Tailored strategies were developed to support learning and behaviour modiﬁcations throughout the program (Table 1). Only two residents were able to spit out the mouthwash despite attempts of supervision and visual prompting. Troubleshooting led to soaking their toothbrush with mouthwash after cleaning.

Oral health outcomes

Oral health status pre- and at 3-months are presented inTable 2.

Three residents were edentulous. Forty (71%) presented with gingival signs and 29 (51%) presented with signs of dehydration (dry mouth, lips and signs of cheilitis) prior to the program. Any decaying or broken tooth triggered a referral to the Specialist dental service. Due to waitlists, onlyfive residents received dental exams and only one received treatment (fillings) secondary to waiting lists and non-compliance. One resident needed two exams, one desensitization session where they visited the clinic and sat in the chair, and a month later, another exam where the dentist was finally able to see inside the resident's mouth.

Plaque index scores significantly improved over time (pre- Median 2.45 out of 3; 3-month Median 1.95, r_t¼0.28, p< .05) (Fig. 3). Baseline behaviour was significantly associated with change in lower plaque index scores, with less cooperative residents at baseline gaining the most change in lower plaque index scores (r_t¼0.28, p<.05). At 3-months, there was a significant association between plaque index scores and communication with lower plaque index scores in residents with verbal communication abilities (rs(27) ¼ 0.36, p < .05). Statistically significant changes were noted in oral health behaviour scores with nine (16%) residents improved in their willingness to brush and their acceptance to the routine; none got worse (rs¼ 0.900, p<.05).

Resident interviews

Of the 36 residents, 34 were interviewed; residents used a range of verbal, non-verbal and augmentative communication strategies to communicate and 14 (40%) used Talking Mats®. Talking Mats®scores ranged from minimum of 9 to a maximum of 29, with a range of effective scores of 19. Four of the Talking Mats® conversations were above a score of 21 deeming them effective.

Seven residents (n¼4%) had a neutral or positive response to their new oral hygiene routine. Resident responses included verbal responses “I like that,” “good,” “it's alright’” and non-verbal responses“put toothbrush in mouth,” “smile” “picked up toothbrush and went to bathroom to demonstrate smiling.”Residents provided 100%

positive comments regarding the three-sided toothbrush and mouth rinse. The most negative comments were recorded for the use interdental brushes (13%) as they proved difﬁcult to use and were perceived as most invasive. All residents, who were asked, responded positively to receiving specialist support and visits from a dentist.

Table 1

Oral health education program illustrative tailored interventions.

Residents Type of support Examples Quotes fromﬁeldnotes

19, 7, 18 Physical Reclined position support to hold interdental brushes positional hand support for brushing

“[…] Went easily to the couch to lie down, mostly theﬂossing is done on the couch which is great!”eQuote from Support staff.

“My mouth feels clean in the morning and at night, with that (three-sided brush) I have brushed better at the back”eQuote form Resident.

13, 14, 20,21 Cognitive Verbal reminders posters supervision timers checklist

“We are brushing […]'s teeth for him at the moment and are letting him do it himself also. I just tell him‘You're not doing it right; I can help you’and he lets me”eQuote from Support staff.

“Staff will help me with brushing and with the white ones (ﬂoss picks)”- Quote from Resident.

6, 11, 19, 23, 24, 26, 27, 28, 30, 31,36

Behavioral Music use of sensory items timers behavioral therapist setting modiﬁcation rewards system

“Brushing hand over hand will help […] be guided as he relates the movements in his mouth with his own hands”eQuote from behavioural therapist.

“We use food as a reward for her oral cares, but this time she was so excited to show her toothbrush that she skipped dinner”eQuote from Support Staff.

“I sing Jingle Bells wile I brush so I know I brush for 2 min”- Quote from Resident.

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Support staff interviews

Staff ranked elements of the oral health program from positive to negative with the most positive responses to 3 sided toothbrush and least positive response to the reminder checklist (Fig. 4).

Six main themes derived from interviews:

Health and social beneﬁts

Seven (84%) staff provided comments on their perception of the positive shift in their client's oral health outcomes post the oral health education program. Positive feedback was received from support staff on the improvement of social interactions amongst them and their clients as oral malodour was no longer an obstacle:

“I’m glad we did the program because if…was sitting here and spoke, you could smell it. Brushing takes longer than it used to but made a difference especially in their breath!”

Beneﬁts of building new routines

The prospect of sustainability for this project was touched on as support workers discussed the beneﬁts of their new brushing schedules and oral health routines improved their clients’overall

health status particularly noticing a signiﬁcant decrease in gum inﬂammation and bleeding.

“His bleeding has lessened, the bleeding gums…like before the blood was really a lot, but now I noticed…. It lessened now I said wow so amazing!”

“I think it’s really good beneﬁt for the boys especially they are not used to doing the night [brushing] so they started doing that he___ smell and bleeding improved”

Equipment preferences

A total of 23 positive comments related to the equipment, particularly the three-sided toothbrush. The ease of use and acceptance of use by their clients was recorded.

“Even the project is over we’ll still do the same thing we are doing currently so yeah thank you for this. We are very grateful that we were included in this project. It’s a big help for these people”

“I like that perfect for them it’s easy because its very comfortable to use for them and they can easily clean their teeth. They don’t have to go to the other side it’s just one stroke and it will run to Table 2

Oral health outcomes (pre-/3-months) (n¼36).

Outcome measure Pre- Post-

Oral Exam Decayed, missing, broken teeth 66% 58%

Gingival signs 71% 61%

Tongue coating 51% 16%

Dry mouth, lips, cheilitis 51% 19%

Plaque Index (1e3) Median 2.45, range 2e3 Median 1.95, range 1e2.5

Oral care practices Brushing once a day 14% 86%

Brushing twice a day 85% 100%

Interdental cleaning 0% 30% proxabrush 19%ﬂoss picks

Mouth rinse use 0% 94%

Timer 0% 8%

Tongue cleaner 0% 11%

Oral care behavior score(1¼cooperative to oral cares; 5¼unable to complete oral cares) Median 2, range 1e5 Median 1.5, range 1e4

Fig. 3.Plaque index scores over time.

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the side by side. I like it…. We will continue to buy that every three months we will replace it”

Negative feedback was received regarding the use of interdental brushes from support staff. Many believed the use was far too difﬁcult due to unfamiliarity with the item and their own perception of causing harm to their clients as they tended to cause bleeding:“Teeth too tight, I cannot insert it. They get hurt; I don't like them to get hurt otherwise they would have a phobia so I don't force it.”

Economic beneﬁts

Some support staff understood the costs incurred by dental care for their clients and commented on the possible beneﬁts of potentially preventing expensive treatment through their new preventative oral health practices.

“It also reduced the work they may do in hospital you know people go for specialist for tooth decay and other stuff. It’s also improved you know in terms of economyepeople are wasting money … Now a days when people do extractions e too expensive, but if you start it earlier and do your oral hygiene properly, there’s no need so it’s kind of, its economically beneﬁtting.”

Participation challenges

Reluctance to participate in oral cares was an obstacle commonly described as most support workers encountered refusal to open mouth, clenching or biting on the toothbrushes:

“Not all of them participated well, I would say at least one we had problems with. Where he would not open the mouth but towards the end he started doing well compared to initially.”

Beneﬁts of special dentist support

Support staff expressed they felt they personally beneﬁted from having guidance throughout the program and assistance with troubleshooting to allow to provide the best care possible for their clients:

“I think it's just the check-ups from weekly to monthly and things like that just um honestly just validates us to make sure we’re doing the right thing I guess and also…Whether we need to be changing our techniques and different environments I guess as well. We found having them lie on the couch was something but when she (Author) came in and mentioned it might be good way to do it as well. So obviously some of us came together and new ideas came through and so the support was really, really good I think yeah.”

Discussion

Despite advances in medical care, dental materials and pro- cedures, there remains inequity and unmet dental needs for people with intellectual disabilities. Poor oral health knowledge and practices in residents and their support staff was evident in this residential setting with some residents brushing only once a day or not at all and a high proportion of oral health issues found.

Reluctance and/or difﬁculties in completing oral care routines were common. Our oral health program focused on tailored oral care practices, the provision of personal dental equipment and the encouragement of daily oral health routines. The oral health education program succeeded in improving oral care routines and reducing plaque levels. The total cost for the oral care kits used in this study was calculated at NZ$37.46 per resident for a three- month period (three-sided toothbrush, an interdental brush, a bottle of chlorhexidine mouth rinse). This cost is much lower than Fig. 4.Support worker ranking of elements of the program.

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fees for emergency dental work or the costs of undertaking dental examinations in sedated or anaesthetized individuals. Calculating the call-out cost for a registered dentist and the in-house speech- language therapist is challenging. However, the median hourly rate of a dental hygienist in New Zealand is estimated at NZ$41.25.²³A 4-h on-site training session at that hourly rate could be estimated at NZ$165 per home visit and may be worth exploring as a method to upskill residents and caregivers to maintain oral health and avoid oral health deterioration that requires urgent intervention.

Poor oral cares in adults with disabilities has been associated with carers' lack of education, poor access to resources as well as, residents' reluctance and/or difficulties in independent or supported teeth cleaning.¹⁶Tailored strategies were implemented to reduce these barriers. Promoting resident independence through pictographic guided support and visual schedules encouraged residents to be independent and promoted cooperation during oral cares. Behaviour guidance techniques such as the tell-show- do and verbal positive reinforcement suggested by the American Academy of Paediatric Dentistry²⁴have been tested against the use of visual schedules in assisting persons with autism spectrum disorder during oral cares and the use of visual schedules has been found to be more effective in managing behaviours and stress in patients during oral cares.¹⁷Providing personalised oral health care materials has been shown to lead to higher acceptance rating from the residents in comparison to those that were not²⁴; branding toothbrushes with individual's names motivated many residents to brush. Interestingly, support workers were less positive about the benefits of checklists, finding them an additional burden and quickly‘dropped’after the routines were in place. Support worker interviews found observations of bleeding cessation and more pleasant breath in residents leading to improved social interactions amongst residents and carers.

Positive outcomes were evident with improved acceptance of oral health care routines and compliance with brushing. Inter- estingly, a decrease in gingival inﬂammation and bleeding led support staff to approach their clients more frequently and conﬁdently for oral cares as those signs were no longer perceived a deterrent.

Limitations and future directions

Despite all attempts to gain resident perspectives, their feedback was limited by their cognitive and communication abilities.

Staff interviews may not have reﬂected all staff perceptions as not all staff who took part in the study were interviewed. COVID-19 national lockdowns led to a drop out in residents’ 3-month outcome measures. Future studies should further explore the role of the education content, the encouragement of better oral care routines and the provision of equipment on outcomes. Longitudinal studies should follow residents longer term and assess long-term change in oral health and reduction in secondary complications e.g. tooth extraction and infections.

Conclusions

An oral health program was developed in hopes of improving oral health care practices within residential housing facilities for people with intellectual disabilities. This program was a cost- effective way of improving the oral health awareness, oral health knowledge, and oral health behaviours of residents and carers.

More research and longer trials are necessary in this area to accu- rately measure their long-term effect. The oral health program presented here, required a multidisciplinary approach to tailor the intervention for positive outcomes. Much work is needed still to

achieve equality in oral health support for adults with intellectual disabilities regardless of their physical, cognitive, and most importantly behavioural challenges.

Acknowledgments

Thank you to Spectrum Care for early support with ethics and project development. Finally, special thanks to Dr. Robert G. East, Dr. Jolin Yang, and Dr. Ian Kuan for sharing your expertise and providing your support during the oral health assessment process in this project.

Oral presentation

Rojo L, Barnes H, Brown S., Allen J, Miles A. Oral Health Educa- tion Program for Adults with Disabilities: An Intervention Study.

Platform presentation. Dysphagia Research Society Annual Meeting, Virtual Meeting March 4th, 2020.

Rojo L, Barnes H, Brown S., Allen J, Miles A. Oral Health Educa- tion Program for Adults with Disabilities: An Intervention Study.

Platform presentation. New Zealand Speech-language Therapists’ Association Biannual Meeting August 31, 2021, Christchurch.

Conﬂicts of interest

No conﬂict of Interest to disclose. Special funding for this project was provided by The Spectrum Care Board of Trustees to provide every resident with personalised oral health kits, reminder book- lets, and information posters placed in each home for visual support throughout the project.

Appendix A. Supplementary material

Supplementary data to this article can be found online at https://doi.org/10.1016/j.dhjo.2023.101516.

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