Article is attached? This is an academic, professionally written exercise consisting of a minimum of 3 to 4 paragraphs in

| PEER-RE VI E WED |evidence & practice / CPD / mouth care

Aims and intended learning outcomes This article aims to provide information for nurses and other healthcare professionals on evidence-based practice to support people with intellectual disabilities with their oral healthcare needs and access to dental services. Such knowledge is essential to enhance the oral health of this population. The article emphasises the importance of nurses being aware of the latest evidence about oral healthcare interventions for

people with intellectual disabilities and explains how this should inform their practice. After reading this article and completing the time out activities you should be able to: » Evaluate knowledge of oral healthcare that can be applied to evidence-based practice and supports people with intellectual disabilities. » Recognise the oral healthcare needs that people with intellectual disabilities commonly experience.

Citation Hartnett L, McNamara M (2021) Oral health and supporting people with intellectual disabilities to get access to dental treatment. Learning Disability Practice. doi: 10.7748/ldp.2021.e2123

Peer review This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence [email protected]

Conflict of interest None declared

Accepted 4 November 2020

Published online February 2021

Why you should read this article: ● To improve your knowledge of the barriers that people with intellectual disabilities experience when accessing dental services ● To understand how to support people with intellectual disabilities with their oral healthcare ● To familiarise yourself with latest evidence about optimal practice in oral healthcare for people with intellectual disabilities

Oral health and supporting people with intellectual disabilities to get access to dental treatment Liz Hartnett and Martin McNamara

Abstract Oral health is an important aspect of a person’s overall health and well-being. People with intellectual disabilities have poorer oral health than the general population, so it is essential that service users and their carers are supported to address this. This article provides information for nurses and other healthcare professionals on how to provide evidence-based practice that supports people with intellectual disabilities with their oral healthcare and assists them to access dental services. The authors examine the latest evidence about optimal practice in oral healthcare for people with intellectual disabilities, emphasising the importance of a person- centred approach. The article also discusses the barriers that people with intellectual disabilities experience when accessing dental services and how these barriers can be addressed.

Author details Liz Hartnett, lecturer, School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Republic of Ireland; Martin McNamara, professor, School of Nursing Midwifery and Health Sciences, University College Dublin, Dublin, Republic of Ireland

Keywords clinical guidelines, evidence-based practice, learning disability, nursing care, oral health, oral hygiene, professional

learningdisabilitypractice.com volume 24 number 2 / April 2021 / 3 3

Permission To reuse this article or for information about reprints and permissions, contact [email protected]

| PEER-RE VI E WED |evidence & practice / CPD / mouth care

» Understand the importance of a person- centred approach when supporting people with intellectual disabilities with their oral healthcare needs. » Identify the issues that people with intellectual disabilities may experience when accessing oral healthcare support and dental services. » Outline evidence-based guidance on making oral healthcare and dental services increasingly accessible to people with intellectual disabilities.

Introduction It has been identified that people with intellectual disabilities have poorer oral health than the general population (Wilson et al 2018). For example, Anders and Davis’ (2010) systematic review revealed higher levels of dental caries and periodontal disease in people with intellectual disabilities compared with the general population. Similarly, Public Health England (PHE) (2019) guidance also recognises that this group has greater unmet oral healthcare needs and reduced access to dental services compared with the general population. Oral healthcare can affect a person’s overall health and well- being (Waldron et al 2019), so it is essential that people with intellectual disabilities receive the necessary support.

Knowledge to support evidence-based practice To support people with intellectual disabilities with their oral healthcare needs effectively, it is important that nurses can access and appraise knowledge that can be applied to evidence-based practice. One of the themes of The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (Nursing and Midwifery Council (NMC) 2018) is to practise effectively, and this involves nurses using evidence to support their practice. Continuous development of the evidence base through research is important to enable nurses to select the most relevant

and up-to-date knowledge to ensure that their practice is effective.

Another theme of the Code (NMC 2018) is to promote professionalism and trust, which includes the requirement for nurses to keep their knowledge and skills up to date. An important aspect of this is the development of the profession’s knowledge base, which is vital in providing evidence for clinical practice. Young (2013) asserted that specialised knowledge is at the core of any professional group. This article focuses on the development of the specialised knowledge required to support people with intellectual disabilities with their oral healthcare needs and to facilitate their access to dental services.

Oral healthcare needs Evidence from several studies has indicated that this population has higher levels of untreated tooth decay compared with the general population (Anders and Davis 2010, Wilson et al 2018). Mac Giolla Phadraig et al (2015a) found that people with intellectual disabilities are more likely to have teeth extracted than restored and that about one third of those aged over 50 years did not have any teeth or dentures. Anders and Davis (2010) also identified that people with Down’s syndrome may have suboptimal oral health. In addition, people with intellectual disabilities often have low awareness of oral health issues, and may rely on others to assist with their oral healthcare and to arrange dental appointments (Cumella et al 2000, PHE 2019).

Box 1 lists some of the common oral health issues in people with intellectual disabilities.

Suboptimal oral health Oral health affects a person’s overall health status, and experiencing oral health issues can affect all areas of their life (PHE 2019). Suboptimal oral health may cause pain, potentially leading to serious issues for some people with intellectual disabilities who have difficulty communicating their pain (PHE 2019). Suboptimal oral health

Key points ● It has been identified that people with intellectual disabilities have poorer oral health than the general population

● People with intellectual disabilities often have little awareness of oral health issues, and may rely on others to assist them with their oral healthcare

● One significant barrier to effective oral healthcare in this population is a lack of specific training for dentists

● Oral healthcare delivered using a person-centred approach has an essential role in improving the overall well-being of people with intellectual disabilities

learningdisabilitypractice.com3 4 / April 2021 / volume 24 number 2

| PEER-RE VIE WED |

has also been associated with cardiac disease, aspiration pneumonia, diabetes mellitus and stroke (Wilson et al 2018, Ward et al 2019). It may also have a negative effect on an individual’s self- esteem, communication and ability to socialise (PHE 2019). In addition, having no teeth limits a person’s food choices, has a negative effect on their ability to chew and on their nutritional intake, and can be associated with obesity (Davies et al 2008, Wilson et al 2018). Oral health issues can also diminish a person’s enjoyment of eating (PHE 2019).

Evidence suggests that people with intellectual disabilities often have additional risk factors for suboptimal oral health, some of which are detailed in Box 2.

Reasonable adjustments need to be made to address the barriers that people with intellectual disabilities may experience when accessing dental services (PHE 2019). Considering the risk factors and barriers to dental services, as well as the evidence relating to suboptimal oral health, it is crucial that people with intellectual disabilities are supported with this aspect of their care and facilitated to access dental services. However, Mac Giolla Phadraig et al (2013) found that healthcare staff supporting people with intellectual disabilities often do not have the knowledge and skills required to provide effective oral healthcare.

Mac Giolla Phadraig et al (2018) analysed data from a cross-sectional survey of adults with intellectual disability who were aged over 40 years. They identified that many people with intellectual disabilities find it challenging to cope with the dental treatment that they require and may have difficulties in expressive communication, which can lead to behaviours that challenge.

Gum disease and dental decay are the most common oral diseases and can lead to the loss of teeth and oral functional impairment (Mac Giolla Phaidraig et al 2015b, 2018). Oral healthcare and dental treatment can prevent or manage these conditions. However, it has been identified

that people with intellectual disabilities in the Republic of Ireland have poorer outcomes in relation to gum disease and dental decay than the general population (Mac Giolla Phadraig et al 2015b), as well as a higher incidence of untreated dental caries and periodontal disease (Anders and Davis 2010). Furthermore, oral health issues in people with intellectual disabilities can be more complex than in the general population (Wilson et al 2018). Therefore, it is important that existing evidence is disseminated among nurses and other healthcare professionals, and that further research is undertaken to generate evidence on what interventions are most effective for this group to improve their oral health outcomes.

Evidence in relation to oral health interventions Wilson et al (2018) emphasised that further research is required to improve healthcare professionals’ understanding of effective

Box 1. Common oral health issues in people with intellectual disabilities

» Greater incidence of gum inflammation » Reduced preventive dentistry » Increased plaque levels » Untreated tooth decay » Greater use of extraction rather than restorative interventions » Increased rates of toothlessness » Greater numbers of missing teeth, no teeth and no dentures » Reliance on others for oral health care » Low awareness of oral health issues

(Adapted from Anders and Davis 2010, Mac Giolla Phadraig et al 2015b, Wilson et al 2018, Public Health England 2019)

Box 2. Risk factors for suboptimal oral health in people with intellectual disabilities

» Medicines that reduce saliva flow, for example antidepressants » Medicines that increase gum inflammation, for example some anticonvulsants » Enteral feeding » Gastroesophageal reflux disease » Issues with accessing dental services » Lack of understanding of the need for daily oral health care » Lower income and education levels » Dexterity issues that may hinder an individual’s tooth-brushing abilities

(Adapted from Davies et al 2008, Anders and Davis 2010, Wilson et al 2018, Public Health England 2019, Joint Formulary Committee 2020)

Online archive For related information, visit learningdisability practice.com and search using the keywords

learningdisabilitypractice.com volume 24 number 2 / April 2021 / 3 5

| PEER-RE VI E WED |evidence & practice / CPD / mouth care

oral healthcare interventions for people with intellectual disabilities, since each person will experience different challenges in relation to their oral care needs. Further research is necessary to develop existing knowledge and understand its application to nursing practice (Waldron et al 2019).

Wilson et al (2019) conducted a systematic review to collate the existing evidence and identify interventions that improve oral health outcomes for people with intellectual disabilities. They found that one intervention that could improve care for this population was education for healthcare professionals on providing oral healthcare support. The provision of outreach oral health services to support access to dental services has also been shown to have positive effects on oral health (Wilson et al 2018). In addition, the use of general anaesthesia to facilitate dental treatment was considered to increase the efficacy of treatments for some people with severe and profound intellectual disabilities or with dental- related behaviours that challenge. However, further research is required in relation to the use of specific tooth-brushing methods to improve oral health, since existing outcome findings remain uncertain.

Wilson et al’s (2019) systematic review identified that a uniform approach to supporting oral health in this population is not recommended. Instead, there is a need for an approach that acknowledges the diverse needs of people with intellectual disabilities, their carers and the service context.

Waldron et al (2019) reviewed the effectiveness of oral hygiene programmes for people with intellectual disability, concluding that the evidence relating to the benefits of these programmes for this population remains unclear. They identified that there is a need for further research to evaluate interventions and stated that studies with increased sample sizes could add to the evidence base. Waldron et al (2019) also emphasised the importance of developing research that focuses on the

effects of suboptimal oral health on overall health and quality of life of people with intellectual disabilities.

Evidence-based oral health interventions for people with intellectual disabilities include (Wilson et al 2018, 2019, PHE 2019, Waldron et al 2019): » The provision of outreach oral health services to support improved access to oral health services. » General anaesthesia to facilitate dental treatment for some people with severe and profound intellectual disabilities or with dental-related behaviours that challenge. » Approaches where the diverse needs of people with intellectual disabilities, their carers and the service context are acknowledged and addressed.

TIME OUT 1 Read the following documents: » PHE (2019) Oral Care and People with Learning Disabilities guidance » Faculty of Dental Surgery, The Royal College of Surgeons of England (2021) Clinical Guidelines and Integrated Care Pathways for the Oral Health Care of People with Learning Disabilities

How could these documents inform your practice in supporting people with intellectual disabilities with their oral health?

Waldron et al (2019) recommended that, given the uncertainty about the evidence for the clinical effectiveness of oral healthcare interventions, high-quality randomised controlled trials are needed to clarify and develop the findings in their review. In the absence of such studies, Waldron et al (2019) recommended the use of professional expertise and emphasised that oral healthcare should be based on the individual needs of the person and their carers.

Taking a person-centred approach One theme of the Code (NMC 2018) is to prioritise people, and taking a person- centred approach to oral healthcare is consistent with this. The issues that people with intellectual disabilities experience in

learningdisabilitypractice.com3 6 / April 2021 / volume 24 number 2

| PEER-RE VIE WED |

relation to their oral health are specific to each individual (Wilson et al 2018); therefore, nurses should ensure that they understand how to take a person-centred approach to their care.

Some individuals with intellectual disabilities experience challenges because of sensory sensitivities, such as feeling uncomfortable when encountering the clinical smell of a dental practice; others have risk factors, such as reliance on enteral feeding. In addition, some individuals may be afraid of attending dental appointments or be anxious about any change in their normal daily routine that is required to address their oral healthcare needs. Some people may display behaviours that challenge or may have limited ways in which to express themselves. Support for the individual also needs to take into consideration the service context and carers’ particular characteristics and needs (Waldron et al 2019), as well as the barriers that each person experiences in accessing dental services.

The Code (NMC 2018) specifies that nurses need to listen and respond to the choices of each individual and respect their diversity. It also states that nurses must listen to the person’s individual preferences and concerns and that they should be involved in any decisions about their care. Similarly, the Nursing and Midwifery Board of Ireland (2014) Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives details the need for nurses to ‘respect each person as a unique individual’ and emphasises the need to provide the person with support and time to make their own choices and decisions.

Many people with intellectual disabilities can become anxious and upset during oral healthcare interventions (Wilson et al 2018). The Code (NMC 2018) states that nurses need to recognise when people are distressed or anxious and to respond to this with compassion. Therefore, knowing the person, the way they communicate, their preferences, likes and dislikes and baseline disposition is essential to ensure

that a person-centred approach to care is maintained. Assessment tools such as the Disability Distress Assessment Tool (DisDAT) (Regnard et al 2007) can be used to provide an understanding of an individual’s baseline disposition and to recognise when they are likely to become increasingly distressed.

TIME OUT 2 In the context of oral healthcare and access to dental services, how might an assessment tool, such as the DisDAT be useful in your practice? Discuss this with your colleagues, for example, asking them how they identify when an individual may be in distress

The Code (NMC 2018) states that nurses must ‘pay special attention to promoting well-being, preventing ill-health and meeting the changing health and care needs of people during all life stages’. Nurses need to be able to adapt and respond to the needs of people with intellectual disabilities in different settings and at various points across their lifespan (McCarron et al 2018) to provide person-centred care. McCarron et al (2018) detailed the various lifespan stages (infancy, childhood, adolescence, young adult, adult, middle age, older adult and end of life) and described a person-centred model that outlines the different forms of nursing care and support that an individual may require at each of these stages.

The need to treat people with respect, kindness and compassion is also emphasised in the Code (NMC 2018). Brown et al (2016) developed a model of compassionate, person-centred care in the context of intellectual disability liaison nursing in the acute hospital setting. This model is particularly suitable for supporting the oral health care needs of people with intellectual disabilities, for example, ensuring that clear communication pathways are established and maintained between the patient, healthcare providers and family members.

Another person-centred care model that could be used to support this population is Moulster et al’s (2019) intellectual

FURTHER RESOURCES Trinity College Dublin has developed the Brush My Teeth website, which provides several resources to support people with intellectual disabilities and their carers with oral care, as well as the following videos: Trinity College Dublin (2018) Brush My Teeth www.brushmyteeth.ie Normal Brush and No Help youtu.be/qQj0ajzomZk Normal Brush and a Little Help youtu.be/Gmkqk_hv3FI Normal Brush and A Lot of Help youtu.be/Xbt0yFuN_N4

learningdisabilitypractice.com volume 24 number 2 / April 2021 / 3 7

| PEER-RE VI E WED |evidence & practice / CPD / mouth care

disability nursing practice model. This model emphasises the benefits for nurses of reflecting on their care, providing evidence- based care and promoting care that focuses on outcomes. Considering the lack of clear evidence in relation to oral healthcare for people with intellectual disabilities, this model can support the development of evidence-based person-centred oral healthcare in this population. Waldron et al (2019) also stated that individualised oral healthcare plans have been shown to be effective in meeting the needs of people with intellectual disabilities.

TIME OUT 3 Consider how Moulster et al (2019) and Brown et al’s (2016) models could be used to structure a person- centred approach to oral healthcare in your practice setting. What changes might you need to make to your practice to ensure the care provided was person-centred?

Accessing oral healthcare support and dental services It is important for nurses to be able to identify the challenges that people with intellectual disabilities experience in accessing oral healthcare support and dental services. Nurses should be able to consider how using evidence-based guidelines such as PHE’s (2019) guidance on oral care can improve access to appropriate dental services for people with intellectual disabilities.

The Code (NMC 2018) emphasises the need to work in partnership with the person to access the healthcare that they need. It also emphasises the need to advocate for vulnerable people and to challenge any discriminatory behaviour and attitudes relating to their care. The role of intellectual disability liaison nurse is crucial in ensuring mainstream healthcare services are accessible to this population. These nurses support the person with an intellectual disability to communicate with others and educate mainstream healthcare professionals on how to make services more accessible (Brown et al 2016).

McCarron et al (2018) stated that specialisation in intellectual disability nursing should be influenced by the changing needs of this population, and emphasised the importance of evidence- based practice in this field. Considering the limited evidence on oral health and the unmet oral healthcare needs of people with intellectual disabilities, it could be suggested that there is a vital role for intellectual disability liaison nurses who specialise in access to mainstream dental care. This role could support people to address and overcome the challenges they experience when accessing dental care.

TIME OUT 4 Discuss with a colleague how the development of the role of an oral healthcare intellectual disability liaison nurse could ‘bridge the gap’ between the people with intellectual disabilities and mainstream dental services. Consider any benefits that access to a liaison nurse could provide for this population

Mac Giolla Phadraig et al (2015b) undertook a focus group with six people with intellectual disabilities to discuss access to dental services in Ireland. The study participants expressed feelings of disempowerment when interacting with mainstream dental services. Mac Giolla Phadraig et al (2015b) questioned the appropriateness of mainstream services for meeting the oral healthcare needs of people with intellectual disabilities, but recognised that their unmet needs represented a complex issue which cannot be attributed solely to a lack of resources in mainstream services.

Mac Giolla Phadraig et al (2015b) also stated that the inclusive focus group method they employed enabled them to access the views of people with intellectual disabilities and could be used in the future to enable the voices of vulnerable groups to be articulated and heard. They also recommended that Irish dental services should ensure equal access for people with intellectual disabilities and emphasised the importance of including the perspectives of service users when redesigning services.

learningdisabilitypractice.com3 8 / April 2021 / volume 24 number 2

| PEER-RE VIE WED |

One significant barrier to effective oral healthcare is a lack of specific training for dentists to support this population, which can limit access (Smith et al 2010). For example, people with intellectual disabilities having limited access to dental services may result in them experiencing long waiting times for a general anaesthetic when undergoing dental procedures (Irish Society of Disability and Oral Health 2012, McGeown et al 2012).

Box 3 provides recommendations for supporting people with intellectual disabilities with their oral healthcare.

There is a need for training and education to improve oral healthcare and dental services for people with intellectual disabilities. This training and education are necessary for family carers, professional carers, dental professionals and dental surgery staff, as well as for people with intellectual disabilities. Box 4 details the training and education required for carers and dental professionals to support this population.

TIME OUT 5 Watch the following Well Connected video, which features people with intellectual disabilities taking on the role of dental ambassador to encourage others to access dental services: youtu.be/ WUsENGNs0e8. Do you think that such an initiative could be useful in your practice setting to support people with intellectual disabilities to access mainstream dental services?

Conclusion Oral healthcare delivered using a person- centred approach that is adapted to the person’s preferences and living circumstances has an essential role in improving the overall well-being of people with intellectual disabilities.

At present, the availability of, and access to, person-centred oral healthcare is inadequate. Access to services and support for people with intellectual disabilities needs to be improved not only at a local practice setting level, but also at a national level. Evidence indicates that, in addition to the lack of access to person-centred support with oral healthcare, people with

intellectual disabilities do not have equal access to mainstream dental health services.

Nurses need to support this population to express their need for improved access to oral healthcare and dental services. They also need to be aware of the evidence concerning the unmet oral healthcare needs of people with intellectual disabilities, the oral health risk factors for this population and interventions associated with improved

Box 3. Recommendations for supporting people with intellectual disabilities with their oral healthcare

General recommendations » Supporting the person to have control and choices in their care and treatment can reduce their anxiety » People with intellectual disabilities should be viewed as active participants rather than passive recipients of their dental care » Appointments need to provide sufficient time for adequate and appropriate explanations of the dental care and treatment being undertaken » Easy-read booklets and other information can be provided for people with intellectual disabilities before the appointment to assist them to prepare » Cognitive behavioural interventions, for example coping strategies and relaxation techniques, can assist in reducing a person’s anxiety concerning dental care and may need to be adapted using a person-centred approach » It is important to communicate to the person about any delays while waiting for their appointment » Where possible, arrangements should be made to avoid the waiting room since this may cause the person to become anxious

Developing an effective relationship Factors that can assist people with intellectual disabilities to develop trust in their dentist include: » A positive attitude towards people with intellectual disabilities, being respectful and patient » Adapting communication to accommodate the person » Knowledge of specific dental issues common in people with intellectual disabilities » A person-centred approach to oral healthcare and dental services

Reasonable adjustments In relation to dental care for people with intellectual disabilities, reasonable adjustments may include: » Use of the first appointment in the morning » Longer appointments » Use of easy-read materials and other resources to support the person to …