Communication challenges for people with learning disabilities in the digital age
Intended for healthcare professionals
Evidence and practice    

Communication challenges for people with learning disabilities in the digital age

Joanne Blair Lecturer, School of Nursing and Midwifery, Queen’s University Belfast, Belfast, Northern Ireland

Why you should read this article:
  • To be aware of communication challenges often experienced by people with learning disabilities

  • To recognise how communication challenges for people with learning disabilities may be compounded by the growing use of digital technology

  • To consider various communication strategies and tools that you could use to support people with learning disabilities

Healthcare provision relies on effective communication, since this can enable information to be shared, develop therapeutic relationships and improve health outcomes. However, many people with learning disabilities experience significant issues with expressive and receptive communication, and these issues are likely to be compounded by the growing use of digital technology. This article outlines factors that affect communication for people with learning disabilities during healthcare encounters, including communication challenges they may experience in relation to accessing health information and using digital technology. The article also explores strategies and tools nurses can implement to address these challenges and ensure effective communication with individuals.

Learning Disability Practice. doi: 10.7748/ldp.2023.e2201

Peer review

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

Correspondence

j.blair@qub.ac.uk

Conflict of interest

None declared

Blair J (2023) Communication challenges for people with learning disabilities in the digital age. Learning Disability Practice. doi: 10.7748/ldp.2023.e2201

Published online: 31 July 2023

Communication is a dynamic and cyclical process that involves a message being transmitted, received and understood (McCabe and Timmins 2013). It is essential to human interaction and makes people feel seen, heard and understood (Money et al 2016). It is a vital part of life that is crucial to well-being (Daly 2017).

Healthcare provision relies on effective communication, particularly because people often seek support from healthcare professionals at a time when they are vulnerable, stressed or anxious. Dithole et al (2017) described communication as crucial for nurses to share information and develop trusting and caring therapeutic relationships with individuals and families. Effective communication can empower individuals to engage with their care and therefore improve their health outcomes.

People with learning disabilities can experience significant challenges with communication – although they will have widely varying communication abilities and needs, since a learning disability is unique to the individual (Smith et al 2020). Generally, the more severe the learning disability is, the more challenging communication becomes (Iacono et al 2019). People with learning disabilities may experience issues with expressive communication (the ability to express oneself, verbally and/or non-verbally through the use of facial expressions or body language) and receptive communication (the ability to understand other people’s verbal language and/or their non-verbal cues) (Beukelman and Mirenda 2013, Marrus and Hall 2017).

Key points:

  • Communication is crucial for nurses to share information and develop trusting and caring therapeutic relationships with individuals and families

  • People with learning disabilities often experience challenges in accessing and understanding health information, and are likely to need assistance with using digital technology

  • Taking time to talk to people with learning disabilities and/or to their family carers is crucial to determine each individual’s preferred communication methods

  • Nurses should adapt their communication based on the individual’s needs and abilities – for example by slowing down the speed at which they speak, providing sufficient time for the person to respond and actively listening

Smith et al (2020) suggested that communication issues may arise for people with learning disabilities because communication skills are typically developed through social interaction and they have fewer opportunities than the general population to develop these skills, since they tend to socialise in smaller groups and mix mostly with other people with learning disabilities and the professionals who support them.

The coronavirus disease 2019 (COVID-19) pandemic led to restrictions on human interactions, which made communication increasingly challenging for everyone. These restrictions and the new means of communication implemented in response have likely compounded the inequalities that people with learning disabilities experience in accessing and receiving healthcare services (Chadwick et al 2023).

This article provides an overview of the factors that affect communication for people with learning disabilities during healthcare encounters. It discusses the challenges that this group may experience in relation to accessing health information and the growing use of digital technology. The second part of the article explains what nurses can do to address the challenges described in the first part and meet the communication needs of people with learning disabilities.

Communication challenges

During healthcare encounters, communication with people with learning disabilities may be affected by a range of factors related to the person with a learning disability, the healthcare professional, the healthcare environment and the organisation, many of which are shown in Box 1.

Box 1.

Factors affecting communication with people with learning disabilities during healthcare encounters

Factors related to the person with a learning disability include:

  • Nature and severity of their learning disability

  • Cognitive ability, for example their ability to understand, retain, process and use information presented to them

  • Presence of sensory impairments, for example if they have a hearing or visual impairment

  • Availability of their preferred communication methods, for example Makaton or the Picture Exchange Communication System

Factors related to the healthcare professional include:

  • Communication skills

  • Willingness to engage with people with learning disabilities

  • Experience of working with people with learning disabilities

  • Level of self-awareness

  • Preconceptions and biases about people with learning disabilities

Factors related to the healthcare environment include:

  • Ease of access to, and familiarity of the person with, the setting where the healthcare encounter takes place

  • Physical layout of the setting, for example how comfortable it feels, whether it provides privacy, the lighting and the level of noise

  • Busyness according to time of day, for example the environment may be particularly busy and noisy during meals or medicine rounds

Factors related to the organisation include:

  • Staffing levels

  • Staff mix

  • The organisation’s priorities, for example whether it prioritises achieving tasks over spending time communicating with individuals

  • Power balance, for example there is a need for senior managers to provide adequate support for front-line staff who are working with people with communication issues, and to recognise the experience and/or training needs of these staff

  • Availability of funding for training to help staff develop their communication skills – in general and specifically for communicating with people with learning disabilities

(Adapted from Daly 2017)

Accessing health information

It is well documented that people with learning disabilities often experience challenges in accessing and understanding health information (Osborne et al 2013, Mastebroek et al 2014, Oosterveld-Vlug et al 2021). These challenges include finding clear and trustworthy health information, understanding how to use health information and what needs to be learned from it, and having the appropriate health information for managing one’s health.

Chinn (2017) recognised that low health literacy is one factor in the poorer health outcomes and higher mortality rates among people with learning disabilities compared with the general population. Health literacy is an area of concern not only for people with learning disabilities, but also for the population as a whole. In England, Rowlands et al (2015) identified a mismatch between the complexity of health materials and the skills of working-age adults, with 43% of adults in the general population being below the literacy level required to understand these materials.

Health promotion materials often require reading skills that people with learning disabilities may not possess (Scott and Havercamp 2016). Oosterveld-Vlug et al (2021) acknowledged that low health literary levels make it challenging for people with learning disabilities to manage their health. According to Alshammari et al (2018), communication issues are the most significant barrier to people with mild learning disabilities accessing and using health information.

It has been suggested that people with learning disabilities are not given adequate information about their health compared with the general population (Alshammari et al 2018). Furthermore, during the COVID-19 pandemic, learning disability nurses had to adapt much of the information that was made available to the general population so that it was suitable for people with learning disabilities (Desroches 2020).

Using digital technology

Developments in technology have enhanced communication and assistive technology has enhanced the support provided to various groups, including older people, those with disabilities and people with learning disabilities (Boot et al 2018). During the COVID-19 pandemic, digital communication platforms were a ‘lifeline’ for many people, and they have become part of the means of communication that people routinely use (Chadwick et al 2023). However, for people with learning disabilities, digital technology can add further complexity to an already confusing and exclusionary world, and most of them are likely to need assistance to access and use it (Boot et al 2018).

Article 9 of the Convention on the Rights of Persons with Disabilities (United Nations 2006) calls for appropriate measures to ensure that people with disabilities have equal access to information and communications technologies and systems. Information technology is increasingly part of daily life (Larsson-Lund and Nyman 2020), yet there is evidence of a digital divide between people with and without learning disabilities (Krysta et al 2021). This is due not only to each person’s abilities but also to social and environmental determinants such availability of funds to purchase equipment, housing situation and access to the internet (Chadwick et al 2019, 2023).

There is little research into the number of people with learning disabilities who have access to a computer or into their ability to navigate screens, search engines, digital tools and social media platforms. Lunsky et al (2022) discussed concerns for the mental well-being of adults with intellectual disabilities during the COVID-19 pandemic because of the risks associated with digital technology such as disinformation, cyberbullying and victimisation, particularly because these individuals may lack an understanding of nuances and/or the ability to think critically. It remains to be seen whether digital communication can offer the same level of interaction as a face-to-face communication and whether healthcare encounters that take place online can be adapted to suit the needs of people with learning disabilities.

Meeting people’s communication needs

Martin et al (2010) undertook a literature review on communication between nurses and people with learning disabilities who communicate non-verbally. They identified three main themes:

  • Knowledge of the person with a learning disability – people who know the person well will be better equipped to understand their non-verbal cues.

  • Mismatch of communication ability between the nurse and the person with a learning disability – a nurse with limited experience of working with people with learning disabilities may lack the skills required to communicate effectively with them.

  • Knowledge of communication – the more knowledgeable the nurse is about communication, the more comfortable they are likely to be when talking with a person who communicates non-verbally.

This demonstrates the need for nurses to adapt their communication based on the individual’s needs and abilities – for example by slowing down the speed at which they speak, by providing sufficient time for the person to respond, and by being actively aware of non-verbal cues as well as what is being said (Martin et al 2012).

Effective communication with people with learning disabilities starts with a thorough assessment of each person’s communication abilities and needs. Taking time to talk to the person and/or to their family carer is crucial to determine the person’s preferred communication methods. If the person does not communicate verbally, alternative methods can be used (Wilder et al 2015), for example gestures, head or body movements and vocal sounds. These forms of communication are generally specific to the individual, so using them requires getting to know the person (Griffiths and Smith 2016).

Providing accessible information to people with learning disabilities is crucial for obtaining their informed consent (Cithambarm et al 2021). The easy-read format was created to help people with learning disabilities understand important information – for example about their health, rights, work or gaining skills. It uses pictures to support text written in succinct and straightforward language (Cabinet Office and Disability Unit 2021). Much evidence supports the use of easy-read information, but health information is not always available in easy-read format (McClinchy et al 2011, Hamrosi et al 2014, Chinn 2020). The person may need support to use easy-read information (Sutherland and Isherwood 2016) and that support is usually provided by family carers, but they may lack the knowledge needed for, or be uncomfortable with, discussing health information.

Communication is affected by environmental factors such as those listed in Box 1. Healthcare settings that specifically care for people with learning disabilities are not always designed to promote effective communication (Stans et al 2017). Reasonable adjustments may be needed to ensure communication is not compromised by environmental barriers – for example, appointments may need to be arranged at the start or end of the day, when the environment is quieter, or in a location the person is familiar with, such as their local health centre or day care centre (Wilson et al 2022).

Nurses also have a role in ensuring that the person’s communication needs are regularly re-assessed and that their communication abilities and needs are recorded and shared with everyone involved in their care (Doody et al 2023).

Communication tools

Heifetz and Lunsky (2018) highlighted that staff in mainstream hospital settings can find it challenging to obtain information about a person with a learning disability. They suggested that a clear care plan and the use of communication tools such as health passports can significantly improve the quality of care, reduce readmissions, and alleviate stress and anxiety for all involved.

The health passport is one of several well established communication tools that nurses can use to elicit essential information from a person with a learning disability and communicate with them effectively (Woods and Standen 2021). Augmentative and alternative communication uses a range of strategies and tools to help people who do not communicate verbally or whose verbal communication is limited. These tools and strategies may be simple letter or picture boards or sophisticated computer-based systems (Communication Matters 2023). Box 2 lists some examples of tools for communicating with people with learning disabilities.

Box 2.

Examples of tools for communicating with people with learning disabilities

Digital technology

Digital communication platforms are increasingly used in healthcare provision. Appointments can be arranged remotely, with the advantage that individuals who find it challenging to attend appointments in person can still be seen and regularly reviewed. Therefore, nurses need to adapt to digital technology, develop their technical competence and digital literacy skills, and become confident and proficient in the use of digital platforms. Nurses also have a role in promoting optimal communication and the development of effective relationships with people with learning disabilities when healthcare encounters take place online. This includes making reasonable adjustments – for example, spending time before the encounter ensuring that the person is comfortable and confident in using the digital platform – and advocating on behalf of the person (Kim and Lee 2021).

Health information is readily available online, but not all of it is accurate, relevant and accessible. Nurses have a role in ensuring that online health information accessed by the person with a learning disability is appropriate and is presented in a way that they will understand. Having knowledge about the person, their background, their cognitive abilities and their support systems is crucial to protect them from misinformation and information overload (Smith et al 2020).

Self-awareness and reflection

To communicate effectively with people with learning disabilities, nurses need to develop self-awareness and reflect on their practice. Patel and Metersky (2022) defined reflective practice as a determined attempt to view an experience alongside personal values and beliefs. Reflection offers a structure to enhance nurses’ understanding of their practice by identifying gaps in their knowledge (Goulet et al 2016). Barchard (2022) emphasised the important role of reflection in nursing practice, since it encourages nurses to think critically about aspects of performance in their professional role, with the aim of using this critique to acknowledge their strengths and areas for improvement. Nurses may increase their self-awareness as a result of reflective practice, which can lead to various improvements, for example in how the nurse communicates with others.

Factors affecting communication that are related to the healthcare professional include preconceptions and biases about people with learning disabilities (Box 1). Reflection offers an opportunity for nurses to explore their preconceptions and biases and how they react to specific situations. The Nursing and Midwifery Council (2018) expects registrants to avoid making assumptions and to be aware of how their behaviour can affect and influence the behaviour of others. Reflective practice and high levels of self-awareness will support nurses to reflect on how they communicate with people with learning disabilities and recognise what they can do to enhance communication (Martin et al 2012).

Conclusion

People with learning disabilities often experience communication challenges in their encounters with healthcare professionals, including when accessing health information and using digital technology. Nurses can use various tools to assist them in communicating effectively with people with learning disabilities. They also need to develop self-awareness and reflect on their practice. As healthcare provision increasingly relies on digital technology, nurses who care for people with learning disabilities need to ensure reasonable adjustments are made and advocate on their behalf. It remains to be seen whether digital communication can offer the same level of interaction as a face-to-face communication and whether online healthcare encounters can be adapted to suit the needs of people with learning disabilities.

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