Manage Pressure Ulcers for people with Learning Disabilities

Firstly, it is important to distinguish between what is a learning difficulty and what is a learning disability to ensure that we are not mixing up both of these terminologies.

A learning difficulty does not always affect general intelligence and may be described as having a specific problem with processing certain forms of information. More recently this has been referred to as Neurodiversity, which encompasses a wide range of neurological differences including:

• Dyslexia
• Dyspraxia (co-ordination)
• Dyscalculia (numbers)
• Attention Deficit Hyperactive Disorder (ADHD)
• Autism Spectrum Condition (ASC) (not all Autistic people have a Learning Disability)

…and some people may have multiple diagnosis. The person’s IQ is above 70 and often much higher than the general population.

Learning Disability (LD) is a life-long condition which cannot be cured. It results in a significant reduction in a person’s ability to understand new or complex information or to learn a new skill (impaired intelligence). They have a significantly reduced ability to cope independently (impaired social functioning) which started before they were 18 with a lasting effect on development (DoH, 2001). The IQ is below 70 and often as low as 20, which would indicate profound LD.

People with learning disabilities (LD), are more likely to have multiple health conditions and experience poor health outcomes and often die early from preventable causes. These include a higher prevalence of chronic conditions like diabetes, obesity, epilepsy, and mental health issues (Emerson, 2013). These comorbidities, compounded by factors specific to their disability, significantly increase the risk and complexity of wound development and management (Bunning et al., 2020). Wounds, particularly chronic wounds such as pressure ulcers, venous leg ulcers, and diabetic foot ulcers, can severely impact physical health, independence, and overall wellbeing (Guest et al., 2017). They can lead to pain, infection, hospitalisation, and diminished quality of life, contributing to further social isolation and exacerbating existing health disparities.

Clinical staff play a crucial role in the prevention and management of pressure ulcers in individuals with LD. However, providing effective wound care in this population requires a deeper understanding of the unique challenges they face.

Specific risks of pressure ulcers for people with Learning Disabilities

• Limited communication (harder to report pain and symptoms)
• Reduced mobility
• Reliance on others
• Increased frailty and early ageing
• Dementia
• Nutrition & immunity (impact on wound healing)
• Increased hospital admissions and long-term care
• Repetitive behaviours
• Incontinence
• Weight issues
• Excessive salivation

(Hack & Beebee, 2025)

Challenges in pressure ulcer management for individuals with Learning Disabilities:

1. Communication barriers:

Effective communication is paramount in pressure ulcer management. Accurate assessment, patient / family / carer education, and shared decision-making rely heavily on clear and understandable communication. However, individuals with LD often experience communication difficulties that can significantly impede the wound care process (Clift & Crowe, 2013).

These challenges can manifest in several ways:

• Receptive language: difficulty understanding verbal instructions, written information, or complex medical terminology. Individuals may struggle to follow pressure ulcer prevention advice or recognise signs of tissue damage.
• Expressive language: limited ability to articulate their needs, concerns, or pain levels. This can hinder accurate assessment and delay appropriate intervention.
• Non-verbal communication: reliance on non-verbal cues, which may be misinterpreted or overlooked by healthcare professionals unfamiliar with the individual’s communication style.

Strategies for overcoming communication barriers:

• Person-centred communication: using simple, unambiguous language, avoiding jargon, and breaking down information into smaller, manageable chunks. Providing information in multiple formats, such as pictures, videos, and demonstrations (Doherty et al., 2017).

• Active listening and observation: paying close attention to non-verbal cues, such as facial expressions, body language, and vocal tone, to gain a better understanding of the individual’s needs and concerns.
• Simplified explanations: providing clear, concise explanations of the wound care process, using visual aids and demonstrations to illustrate key points, such as communication boards, picture exchange systems (PECS), or electronic devices, to facilitate communication (Clift & Crowe, 2013).
• Involving carers and family members: they can provide valuable insights into the individual’s communication preferences, behaviours, and medical history and act as intermediaries to ensure effective communication (Marks et al., 2021).
• Training healthcare professionals: providing nurses and other healthcare professionals with training in communication techniques specifically tailored for individuals with LD (Doherty et al., 2017).

2. Understanding and concordance with treatment:

Even with effective communication strategies, individuals with LD may struggle to fully comprehend the reasons and importance behind required pressure ulcer assessments, management and interventions. This can lead to difficulties in achieving concordance, i.e. adhering to prescribed treatment plans. Factors that contribute to this include:

• Cognitive limitations: challenges in understanding complex concepts, problem-solving, and remembering instructions (Bunning et al., 2020).
• Difficulty with abstract thinking: struggling to grasp the long-term benefits of wound care and the potential consequences of non-adherence.
• Limited awareness of their bodies and health: difficulty recognising symptoms of infection or understanding the importance of preventative measures.

Strategies for enhancing understanding and concordance:

• Repetition and reinforcement: repeating instructions multiple times and providing ongoing reminders to ensure the individual understands and remembers the treatment plan.
• Positive reinforcement: acknowledging and rewarding positive behaviours and efforts to adhere to the treatment plan.
• Collaborative goal setting: involving the individual, their carers, family members, and specialist teams in setting realistic and achievable goals for wound care.
• Addressing concerns and fears: creating a safe and supportive environment where the individual feels comfortable expressing their concerns and fears about wound care.
• Tailoring treatment plans: adapting the treatment plan to the individual’s cognitive abilities, preferences, and lifestyle. This may involve simplifying the regimen, providing assistance with dressing changes, or utilising alternative wound care products.

3. Sensory sensitivities and behavioural issues:

Many individuals with LD experience sensory sensitivities, which can make pressure ulcer assessment and management procedures particularly challenging. These sensitivities may involve:

• Tactile defensiveness: aversion to touch, which can make dressing changes and wound assessments distressing.
• Auditory sensitivity: distress from loud noises or specific sounds associated with wound care, such as the ripping of tape or the sound of suction machines.
• Visual sensitivity: discomfort from bright lights or the sight of wound products or dressings.

These sensory sensitivities can trigger anxiety, fear, and challenging behaviours, such as aggression, self-injury, or withdrawal (Caldwell & Jowsey, 2010). These behaviours can then make it extremely challenging to complete pressure ulcer management effectively and safely.

Strategies for managing sensory sensitivities and behavioural issues:

• Creating a calm and predictable environment: minimising noise and distractions, using soft lighting, and ensuring the individual is comfortable and relaxed before starting wound care.
• Gradual desensitisation: introducing wound care procedures slowly and gradually, allowing the individual to adjust to the sensations and build tolerance.
• Sensory distraction techniques: using music, aromatherapy, or other sensory stimuli to distract the individual from the discomfort of wound care.
• Positive reinforcement: rewarding cooperative behaviour and efforts to tolerate wound care procedures.
• Behavioural management strategies: employing techniques such as positive behaviour support (PBS) to understand and manage challenging behaviours (Gore et al., 2013). This involves identifying the triggers for challenging behaviours and developing proactive strategies to prevent them.
• Pharmacological interventions: in some cases, medication may be necessary to manage anxiety or agitation during wound care. This should be used as a last resort and only in consultation with a psychiatrist or other qualified medical professional.

4. The critical role of Multidisciplinary Team (MDT) collaboration and person-centred care:

Effective pressure ulcer management for individuals with LD requires a person-centred approach that involves the individual, their family members, carers, and a multidisciplinary team (MDT) of healthcare professionals, including nurses, carers, specialists, and social workers (Taggart et al., 2012).

• Person-centred care: focusing the care on the individual’s needs, preferences, and goals, rather than focusing solely on the clinical aspect of pressure ulcer management.
• Shared decision-making: involving the individual in all decisions about their care, providing them with the information and support they need to make informed choices.
• Communication and coordination: ensuring effective communication and coordination among all members of the healthcare team to provide seamless and integrated care.
• Multidisciplinary assessment: conducting a comprehensive assessment of the individual’s physical, cognitive, emotional, and social needs to develop a holistic care plan.
• Regular review and evaluation: regularly reviewing and evaluating the effectiveness of the care plan and making adjustments as needed to ensure the individual’s needs are being met.
• Advocate: act as a patient advocate for those whose lack of communication skills and intellectual capabilities may hinder their ability to achieve appropriate levels of care from other disciplines.

In conclusion, providing effective pressure ulcer assessment, prevention, and management for individuals with LD, can be complex and challenging. All healthcare professionals must be aware of the unique challenges faced by this population, including communication barriers, difficulties with understanding and concordance, sensory sensitivities, and behavioural issues.

By adopting a collaborative, person-centred approach, employing evidence-based strategies to address these challenges, and advocating for the individual’s rights and needs, healthcare professionals can significantly improve pressure ulcer outcomes and enhance the quality of life for individuals with LD. This can go a long way to reducing the health inequalities that LD patients face.

Please cite as: OSKA Care Ltd. (June 2025). Navigating the complexities of pressure ulcer management in patients with Learning Disabilities. Havant, Portsmouth: OSKA Care Ltd. 

References:

Bunning, K., Kerr, W., & Evans, J. (2020). A systematic review of the barriers and facilitators to the management of long-term conditions for adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1089-1113.

Caldwell, K., & Jowsey, T. (2010). Sensory sensitivities of adults with intellectual disability. Journal of Intellectual & Developmental Disability, 35(2), 92-97.

Clift, J., & Crowe, M. (2013). Communication with people with intellectual disabilities in the acute hospital setting: A focused ethnography. Journal of Clinical Nursing, 22(19-20), 2891-2899.

Doherty, K., Erwin, J., & Sidebotham, P. (2017). Improving communication in consultations with patients that have intellectual disability: Development of an education programme. Nurse Education in Practice, 27, 121-127.

Department of health and social care. (2001) Valuing People – A New Strategy for Learning Disability for the 21st Century. Available at https://www.gov.uk/government/publications/valuing-people-a-new-strategy-for-learning-disability-for-the-21st-century (Accessed 12/06/25)

Dowse, L. (2019). Elder abuse and intellectual disability: A scoping review. Journal of Applied Research in Intellectual Disabilities, 32(5), 1037-1053.

Emerson, E. (2013). Health inequalities and people with intellectual disabilities. Current Opinion in Psychiatry, 26(5), 419-423.

Gore, N. J., McGill, P., Toogood, S., & Hughes, C. (2013). Positive behaviour support for people with intellectual disabilities who display challenging behaviour: A review of effectiveness and contextual validity. Journal of Applied Research in Intellectual Disabilities, 26(6), 485-506.

Guest, J. F., Ayoub, N., McIlwraith, K. J., Uchegbu, I., Gerrish, A., & Weidlich, D. (2017). Health economic burden that wounds impose on the National Health Service in the UK. BMJ Open, 7(12), e01386

Marks, B., Wood, S., Grove, A., & Seers, K. (2021). The experiences of family carers of adults with intellectual disabilities in acute NHS hospitals: A qualitative evidence synthesis. Journal of Advanced Nursing, 77(3), 1117-1131.

Taggart, L., Cousins, W., Irvine, F., & Bunting, B. (2012). A systematic review of interventions to improve the health of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 25(6), 481-498.