practice & research

developing clinical guidelineson promoting oral health:an action research approachA service providing day and residential care in Ireland has improved the general and

oral health care of people with learning disability. Sheila Doyle and Caroline Dalton report

Over past decades the promotion

of normalisation and socially

inclusive policies has resulted in a

move from institutional care to community

living for people with a learning disability

(Wolfensberger 1972). Service providers seek

to ensure that people experience greater

choice and control in their Mves and are

included Vi/ithin their communities (Jones

1999, Northway etal 2005). According to

the National Intellectual Disability Data-

base 2007. 8.262 individuals (or 32.3 per

cent of people with learning disabilities in

the Republic of Ireland) live in residential

settings, mainly in the community (Kelly ei

al 2007). 'The numbers of people accom-

modated in community group homes and

in residential centres have increased and

decreased respectively, on an almost contin-

uous basis, since data collection commenced

in 1996; Kelly et a/note.

People with a learning disability have the

right to be valued and supported as equal

citizens, including the right to access equi-

table health care. As a result of community

living, such people are accessing main-

stream healthcare services more frequently

1 ¿ LEARNING DISABILITY PRACTICE vol 11 no 2 March 2008

practice & research

(Department of Health and Children 2002).

However, the evolving evidence base suggests

that such individuals experience health

disparities (Mencap 2004). with studies

linking this disparity to a lack of specialist

knowledge and training of community

healthcare vi'orkers on the needs of people

with learning disabilities (Prasher and Janicki

2002). Although these people have the same

rights to equal standards of health care as the

general population, there is evidence that

they generally experience poorer health, and

oral health in particular, have unmet health

needs and have lower uptake of screening

services (Faculty of Dental Surgery 2001).

Importance of oral hygiene

Oral diseases have not always been given as

much priority as other complex medical prob-

lems (Malmstrom et al 2002). Yet the effect

of oral problems on an individual's quality

of life can be profound (Locker 1992). Oral

disease has been linked with other systemic

diseases, including cardiovascular disease,

cerebrovascular disease, diabetes, respiratory

infection, periodontal bone loss and oste-

oporosis (Malmstorm ef ai 2002). Poor oral

health can result in significant pain and an

inability to consume nutritious food, and can

damage a person's self-image and confidence

(National Disability Authority 2005). Good

oral health has many holistic benefits in that

it can improve general health, dignity and

self-esteem, social integration and quality of

life (Fiskeeial2000).

Up to 36 per cent of adults with learning

disability and 80 per cent of adults with

Down syndrome are believed to have

unhealthy teeth and gums (Mencap 2004).

with common oral conditions such as dental

caries and periodontal disease featuring

prominently.

A study can̂ ied out in 27 residential services

in Ireland on the oral health of 281 adults

with leaming disabilities showed the residents

had lower levels of treatment of dental caries

and periodontal diseases in comparison to the

general population (Crowley eta/2003). The

study identified that the residents had more

extractions, fewer restorations, fewer natural

teeth and were less likely to have dentures.

These findings mirror those in a qualitative

study of the oral health of 269 individuals

with leaming disabilities in Northern Ireland

(Department of Health. Social Services and

Public Safety 2005).

A Japanese study of 24 adults with Down

syndrome found that all of them had advanced

periodontal disease. In the worst cases, the

disease had progressed to its maximum, while

the lowest rate was 60 per cent (Yoshihara

et al 2005). The relevance of this finding is

significant for people with Down syndrome

because studies have identified that up to

40 per cent of people with Down syndrome

suffer from congenital heart defects and

immunosuppression (Griffiths 2000). Cardio-

vascular patients are at high risk of developing

bacterial endocarditis during invasive dental

procedures (Stiefil 2002).

'Good oral health has manyholistic benefits in that it

can improve general health,dignity and self-esteem, socialintegration and quality of life'

MethodGiven the importance of oral health care.

the Kerry Parents and Friends Association

undertook an action research approach

to review the oral health of people with

learning disability who make use of their

services in southern Ireland, The associa-

tion is committed to providing a profes-

sionally delivered, quality service to people

with a learning disability and their families,

Avison ei a/ ( 1999) say of action research:

The emphasis is more on what practitioners

do than on what they say they do', and.

according to Coghlan and Brannick (2005).

action research consists of five distinct

areas:

• pre-step: identifying the necessity of

undertaking the research project

diagnosis: identifying the specific issue/

problem involved

planning action: determining the steps

that need to be taken in relation to the

issue/problem

- taking action: implementing the plan

- evaluating action: examining the intended/

unintended outcome of the actions

taken.

Pre-step

Initially, an oral assessment of those using

the service was undertaken by the Health

Service Executive (HSE) dental services

(Southern Region). The HSE is responsible for

providing health and personal social services

for everyone living in the Republic of Ireland.

The dental team examined 68 people with

a learning disability. 18 of whom lived in

homes run by the association. The other 50

were day attendees who lived at home with

their families.

Diagnosis

A total of 38 people needed some form of

treatment after examination. Most of them

could be treated in primary care settings.

with only two assessed as requiring general

anaesthesia for invasive dental treatment.

With more than half of those screened

needing further treatment, staff identified

oral health as an area that needed further

intervention and wanted to promote oral

health. Following this review, the Kerry

Parents and Friends Association decided to

develop clinical guidelines for promoting

oral health.

Planning action

While treatment for most dental diseases is

available, preventive programmes must be

modified according to the needs and abilities

of each individual (Stiefil 2002). Continuous.

systematic and individualised oral care can

inhibit the progression of oral disease (Yoshi-

hara et a/2005).

While it is clear that clinical guidelines

on oral health care should be included in

practice settings, a study in Ireland identified

that only 12 per cent of service areas had

written oral healthcare guidelines in place

(Crowley et at 2003), Despite the importance

vol 11 no 2 March 2008 LEARNING DISABILITY PRACTICE 13

practice & research

Table 1 ific aspects of oral health care

Healthcare aspects

Oral assessment and care plan

Assisting/empowering service users

to brush their ovun teeth

Dental appointments

Nutrition and oral hygiene

Medication and oral hygiene

Physical environment and oralhygiene

Guidelines

How to assess the soft and hard tissue of the oral cavity

Referrals to dental health services required outside

routine dental check-ups

Provided a structure for identifying dental problems in

conjunction with the dental team of the HSE

Required the identification of specific goals to be

achieved in the treatment of dental problems

Actions required to achieve these goals and review

dates for all treatment, until the desired outcome was

achieved

A 16-step guide for brushing teeth was incorporated

into the guidelines to be used as a basis to ensure that

staff brushed the teeth of service users effectively

Could be used as a skills-training programme for

service users who can be supported to brush their

teeth independently

A baseline of at least an annual visit to the dentist was

advocated

Role of front-line staff as advocates is emphasised,

as is the importance of providing specific, relevant

information relating to each individual to the dental

team

Nine specific factors related to appropriate nutrition

for the promotion of oral health are provided in

the guidelines. Importance of individual dietary

requirements - for example, liquidised diets - is

emphasised.

Implications of the use of medication on oral hygiene

specifically relating to xerestomia (dry mouth) and

gingival overgrowth

Importance of appropriate environmental supports

to ensure that people with a learning disability can

undertake oral hygiene activities effectively. The

need for appropriate and accessible equipment,

such as mirrors at the right height for service users

in wheelchairs, as a prerequisite in undertaking such

activities is emphasised

of oral health promotion. Crowiey et al's

(2003) study found that 66 per cent of staff

reported that they had received no training

in oral care, while 80 per cent recognised a

need for such training. Carers (family and

professionals) should be offered, and should

take up. advice on oral health education.

Improvements in the oral health of aduits

with learning disabilities have been demon-

strated through training and education of

front-line staff (Nicolai and Tesini 1982).

Nurses and care staff are key agents in the

delivery of care to people across services

in Ireland. Delegates attending the 2005

National Association for the Mentally Handi-

capped of Ireland conference were told that

although many professionals have an impor-

tant role to play, it is those on the front line

who have the most detailed knowledge of

the person and his or her behaviours. Inter-

ventions designed by front-line staff may be

more suitable than those designed by visiting

specialists.

The registered intellectual disability nurse

(RNID) plays a pivotal role in preventing oral

disease, a principal aim of oral health promo-

tion and oral health education, through the

development of oral health programmes

(Stiefil 2002). In light of this, the devel-

opment of the guidelines was undertaken

by the community RNID within the Kerry

Parents and Friends Association.

Taking action

Initially the community RNID (SD) contaaed

nine service providers to ask whether they

had oral healthcare guidelines. Only two

of the nine services had such guidelines in

place. The others identified the need for

guidelines and expressed an interest in their

development.

Contact was made with the HSE dental

services (Southern Region), informing them

of the decision of the Kerry Parents and

Friends Association to develop guidelines

relating to oral health. The response of the

dental health team, comprised of a dental

nurse, a dental hygienist and two dentists,

was very positive. Practical support in the

form of literature and information leaf-

lets on oral health, though not specific to

learning disability, proved to be beneficial

in the development of the guidelines. Subse-

quent meetings with the dental hygienist

and dental nurse aided the development

of oral care assessments and oral care plans

for service users. The dental team offered

to provide additional support by reviewing

the guidelines on completion. According to

Waldman and Perlman (2007), developing

professional relationships between nurses

and dentists should improve the availability

of accessible dental services for people with

learning disabilities.

A comprehensive review of the available

national and international research in this area

14 LEARNING DISABILITY PRAaiCE vol 11 no 2 March 2008

practice & research

was also undertaken by the community nurse

(SD) to ensure an evidence-based approach to

the development of the guidelines. Informa-

tion provided by the HSE dental team was

incorporated with research specific to LD in

the development of the guidelines.

The clinical guidelines for the oral health

care of adults with an intellectual disability

were completed last May and focused on the

improvement of oral health care within an

integrated care approach. They were aimed

at all those involved with the health and

welfare of people with a learning disability

and provided information on nine specific

aspects of oral health care (see Table 1 ).

The guidelines offer information on the

care of dentures, oral care of service users

who are edentulous and the oral care of

the unconscious service user. Specific charts

for recording aspects of oral health practice

were also developed, including screening

assessments, oral health care plans and oral

hygiene practices.

Evaluating action

Since the clinical guidelines were completed,

the response has been positive. After they

were endorsed by a management meeting of

the Kerry Parents and Friends Association, a

decision was taken to implement the guide-

lines. Feedback from front-line staff within

the association has also been positive.

Two organisations that were originally

contacted to ascertain whether services

had guidance in place have subsequently

requested a copy of the completed guide-

lines. One of these provided feedback, saying

that the guidelines were practical and easy

to follow. They had been shown to the

dental services for the organisation and it

was recommended that the guidelines be

adopted.

'In identifying best practicein this area, education on oralhealth was considered to bevital for service users, staff

and carers'

Positive feedback from the HSE dental

services indicated that the guidelines will

improve the general and oral health of indi-

viduals attending the service. The dental

team also said that they would like to see

such guidelines developed by all organi-

sations providing services to people with

learning disability.

In identifying best practice in this area.

education on oral health was considered to

be vital for service users, staff and carers.

This has been addressed with the HSE dental

care team, who offered to attend training

sessions to support the use of the clinical

guidelines.

An evaluation of the effect of the guide-

lines and the education of service users, staff

and carers will establish whether the meas-

ures undertaken to promote oral health are

fit for purpose. It is envisaged that such an

evaluation will follow the implementation of

the training programme.

ConclusionThe importance of oral health for people

with a learning disability has been empha-

sised in the literature, as have the health

disparities that can blight lives (Mencap

2004). Learning disability services should

encourage front-line staff to develop knowl-

edge in relation to oral health and offer

guidelines to promote oral health (Crowley

ei al 2003) •

Sheila Doyle RNID, PostgraduateDiploma in Nursing - Multiple andComplex Disabilities, Community Nurse,Kerry Parents and Friends Association

Caroline Dalton RNID, BNS, CertBehaviour Therapy, Lecturer and Courseco-ordinator for the PostgraduateDiploma in Nursing in Multiple andComplex Disabilities (ID), UniversityCollege Cork

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