Person-centred critical care for a person with learning disability and COVID-19: case study of positive risk taking

This case study focuses on Jade, a 21-year old woman who contracted COVID-19 in December 2021 and was in hospital for around 4 months, including 68 days being ventilated in an intensive care unit (ICU). Jade's health needs were compounded by having learning disabilities and autism, and this case study illuminates the effective multidisciplinary collaboration between critical care staff and the acute hospital learning disability liaison nurse (AHLDLN) that led to an eventual positive outcome for Jade. It aims to illustrate the complexity of Jade's physical, social, emotional and cognitive health needs during the acute and recovery phases of her illness, and the extensive reasonable adjustments made to support her and her family's needs. It presents the perspective of both the critical care and learning disability liaison nurses and draws on their reflections from this experience.

Background

From the initial identification of COVID-19 as a disease caused by a novel, highly contagious virus (SARS-CoV-2) presenting a global public health emergency, people with learning disabilities experienced higher rates of infection, symptom complications, and mortality (Williamson et al, 2021). During the first wave of COVID-19 in the UK, mortality rates for people with learning disabilities were six times higher than those in the general population, and at the end of 2021 (following the introduction of vaccination) they remained three times higher (Henderson et al, 2022). Furthermore, analysis undertaken by Learning from Lives and Deaths (LeDeR), a service improvement programme for people with a learning disability and autistic people at King's College London, identified that during 2021 the rate of excess deaths was more than two times higher for people with a learning disability compared with the general population (White et al, 2022).

People with learning disabilities are known to experience high levels of pervasive health inequalities and poorer health outcomes than the general population (Tyrer et al, 2021). The main causes of death in people with a learning disability in 2021 were COVID-19, diseases of the circulatory system, diseases of the respiratory system, cancers, and diseases of the nervous system (White et al, 2022). Despite improvements in the evidence base on these health inequalities resulting in targeted policy and service delivery, life expectancy for people with learning disabilities remains significantly reduced, and is lower than the general population by 23 years for males and 27 years for females (National Institute for Health and Care Excellence (NICE), 2021). Moreover, 46% of people with learning disabilities live with between seven and ten comorbidities (NICE, 2021).

In terms of COVID-19 infection, the underpinning risk factors for people with learning disabilities are multi-faceted and unique to each individual. Given a higher incidence of comorbidities, including diabetes, obesity and respiratory conditions, it was believed that these factors have led to the higher mortality rates. However, it is also argued that underlying assumptions made by clinicians about people with learning disabilities have often presented a higher risk (Chicoine et al, 2022). This is due to diagnostic overshadowing and disability bias or ableism, which can lead to expectations of poorer outcomes, rather than a rights-based expectation to intervene, escalate, and seek recovery as an outcome (Totsika et al, 2021). Diagnostic overshadowing refers to the missatribution of symptoms arising from physical or mental health problems to an individual's learning disability, leading to delayed diagnosis and treatment (Javaid et al, 2019). Examples include attributing a confused state to a person's learning disability rather than infection, dehydration or medication side effects.

A range of underlying non-medical factors also impacted people with learning disabilities in both the prevention and treatment of COVID-19 infection. These include health literacy and the ability to follow population-wide guidance on protective measures, the need for supported care with involvement of a team of staff, the ability to tolerate invasive and stress-inducing interventions such as wearing face masks or an oxygen mask during treatment, and understanding and tolerating the need to isolate within the home, or to remain in a hospital bed or room (Baksh et al, 2021; Cummins et al, 2021).

Across the health pathway, people with learning disabilities are also vulnerable to not being able to tolerate established, standardised processes and procedures, which may in turn reduce their chances for successful recovery (Koyama et al, 2022). People with a learning disability and/or autism often have sensory perception and processing difficulties – involving lighting, noise, touch and smells – that can lead to feelings of being overwhelmed, confused or distressed. Putting reasonable adjustments in place based on individual need is a legal duty set out within the Equality Act 2010. Reasonable adjustments include making adaptations to communication methods, processes, procedures and interventions; examples include changing the time of an appointment to avoid a long period of waiting, creating accessible information in easy-read format, and reducing sensory overload by removal of unnecessary equipment. There is evidence that such adjustments make health care accessible for people with learning disabilities by addressing potential barriers, which enable equity of access, and uphold safety (Moloney et al, 2021). However, it is important to recognise that adjustments and deviations from standardised practice can elevate risk and therefore demand careful and expert planning and management, with measured variations that are safe and achievable (Louch et al, 2021). This is where the AHLDLN role brings clinical expertise to support teams to put reasonable adjustments in place and build a compassionate, person-centred model of care to enable the best outcomes (Brown et al, 2016; Wilson et al, 2022).

In 1999 NHS Lothian was the first health service in the UK to introduce the role of the AHLDLN, with this initiative being subsequently endorsed in Scottish health policy (Scottish Executive, 2002) and recommended by Mencap (2016) in the Getting it Right charter and campaign. Over successive years, the role has been firmly established as an integral component of the support infrastructure in acute hospitals and has been introduced across the UK and Ireland. There is a growing evidence base to demonstrate its value and impact on patient outcomes through educational interventions, influencing policy, and supporting reasonable adjustments at both individual and organisational level (Moulster, 2020; Bur, et al, 2021). The main elements of the role of the AHLDLN were identified through a mixed methods research study undertaken by Brown et al (2012) and are identified in Table 1. Key to the success of AHLDLNs is their leadership, influencing and enabling skills to support teams to deliver safe, effective, person-centred care to patients and their families (MacArthur et al, 2015).

Case study

Patient overview

At the time of this case study, Jade was living in Edinburgh with her family, having moved there from Poland when she was 13 years old. Jade was diagnosed with a severe learning disability and autistic spectrum disorder at a very young age. She experiences significant anxiety in unfamiliar settings and, alongside her communication difficulties, this can lead to expressions of distress including self-injurious behaviours. Jade had no known comorbidities and this was her first admission to hospital. Both Jade's and her mother's first language is Polish, and although they both understand English, Jade is non-verbal and is supported to communicate using symbols and familiar objects. Jade enjoys using her iPad to listen to Polish music and to watch videos, with trams travelling through her home town in Poland being a particular favourite.

Jade tested positive for COVID-19 in December 2021 and 2 days later, following GP assessment, she was attended to by paramedics in order to transfer her to hospital for assessment. Given Jade's distress at the sensory overload and anxiety caused by her situation, the paramedics were with her at home for 4 hours, before they could safely move her to the ambulance, following administration of lorazepam (for her anxiety). On admission to hospital her clinical condition was recorded as being ‘mildly unwell’, with no sign of using accessory muscles that would have indicated respiratory compromise, and with peripheral oxygen saturation of 87% on air. However, Jade's level of distress was high and assessment by the intensive care unit (ICU) team was that further invasive investigations (such as chest X-ray) at this stage would mean she would need to be sedated and ventilated, which was felt not to be in her best interests, given her presenting symptoms. She settled overnight in a quiet single room with her mother present and in the morning her oxygen saturation levels had risen to 96% on air. Following consultation with Jade's mother there was agreement that she would be best cared for in her familiar home environment. Unfortunately, 5 days later her condition worsened with acute breathlessness and on re-admission to hospital her oxygen saturations were 67%. In spite of Jade's deteriorating condition, she was not able to tolerate the urgent need for oxygen therapy and the decision was made that admission to ICU would best ensure her needs were met. Given the urgency of the situation and Jade's experience of sensory overload in an unfamiliar environment, including multiple staff members wearing full personal protective equipment (PPE), she manifested her anxiety and distress in the form of physical aggression towards herself and the health care staff.

Making reasonable adjustments in a critical situation

With the situation becoming increasingly critical and potentially life-threatening for Jade, due to the risk of hypoxic cardiac arrest, and in the face of unfamiliar territory in their experience of treating someone with a learning disability with this level of COVID-19 hypoxia who was exhibiting high levels of distress, the ICU team recognised the need to make significant and immediate reasonable adjustments. These included some staff removing certain items of PPE in order that Jade could more easily relate to them and the decision to administer a sedative in a hospital corridor, rather than in the controlled environment of the admissions unit. This permitted safe transfer to ICU, where Jade was admitted to a side room, intravenous access was obtained and rapid sequence intubation was performed, thereby stablising her situation.

Jade remained in ICU for 104 days and for a further 16 days in a step-down ward before being discharged home. A summary of key milestones in Jade's admission is presented in Table 2, with the key critical care nursing priorities detailed in Box 1. Jade's medical treatment in ICU was complex and included prone positioning (Binda et al, 2021), administration of the broad-spectrum antibiotic Tazocin (piperacillin and tazobactam) and, linked to her prolonged ICU stay, treatment of multiple infections (such as chest, sinus and blood cultures) with numerous antibiotics. Jade experienced two initial failed attempts at extubation, resulting in the need for a tracheostomy.

Box 1.Critical care nursing priorities for Jade

• Treatment of COVID-19 pneumonitis
• Medication management
• Safe sedation management
• Ventilation management
• Prone positioning and associated care – one episode (18 hours)
• Continuation of regular medication regimen, complex with sedation needs
• Frequent sedation holds and assessment of consciousness levels
• Tracheostomy management and safety
• Weaning of ventilation
• Maintaining safety of Jade in a complex, unfamiliar environment
• Providing support to Jade's family
• Involvement in rehabilitation
• Avoiding the cycle of re-sedation
• Avoiding ICU complications

Involvement of the learning disability liaison nurse

An email referral to the AHLDLN was made by the senior charge nurse after Jade had been in ICU for 5 days. Their first meeting took place 3 days later, where in addition to the AHLDLN being able to update the ICU nurses about Jade's known community learning disability support services (which were minimal), she suggested making contact with the paediatric ICU team at another hospital site who had recently cared for someone requiring ventilation who had a learning disability similar to Jade's. This led to valuable discussions between the medical teams regarding pharmaceutical interventions and learning disability psychiatrist's advice on Jade's anticipated behavioural support needs when she regained consciousness and was extubated.

Throughout Jade's period of care in ICU the nursing team liaised with the AHLDLN to ensure that appropriate reasonable adjustments were made to ensure that her needs were met effectively (summarised in Box 2). Jade's care also involved the dedicated critical care recovery team, made up of a medic, nurse, physiotherapist, occupational therapist, dietitian, speech and language therapist, pharmacist and psychologist. Given that ICU has to be a highly controlled environment, and was already significantly affected by the enhanced infection prevention and control requirements associated with COVID-19, many of these adjustments constituted substantial positive risk-taking by the critical care team. Seale (2014) describes positive risk-taking as involving an element of risk in terms of health and safety, but stresses managing that risk rather than avoiding or ignoring it; taking positive risks because the potential benefits outweigh the potential harm.

Box 2.Positive risk-taking and reasonable adjustments in ICUPositive risk-taking

• Removal of personal protective equipment (PPE) during transfer from admission area to ICU
• Allowing Jade's mother access to an otherwise restricted COVID-positive area
• Use of minimal PPE while aerosol-generating procedures were undertaken, to prevent distress
• Readjustment of sedation expectations
• Minimising monitoring
• Weaning ventilation based on Jade's peripheral saturations instead of via an invasive arterial line

Reasonable adjustments

• Jade being placed in side room in quiet area of unit to facilitate a calm environment
• Early use of iPad for calming/reassuring music/sounds
• Early movement of Jade into a cubicle to provide calm environment to prevent distress
• Adjustment of critical care assessment tools – Confusion Assessment Method (CAM-ICU) (Miranda et al, 2018) not appropriate in this situation
• Extensive multidisciplinary team involvement to facilitate daily gym sessions – including Jade's mother, AHLDLN, physiotherapist, physiotherapy assistant, occupational therapist and at least one bedside nurse
• Reducing equipment in the immediate environment where possible

Meeting Jade's communication needs

Over and above Jade's critical care nursing needs, the main nursing and critical care recovery team's priorities were to provide support to her family and secure their full involvement in assessing Jade's baseline needs and preparing for future reasonable adjustments to maximise her potential for recovery. The initial meeting of the AHLDLN with Jade's mother and aunt took place in the ICU family room, with no time pressures in order to be able to explain Jade's situation and seek their involvement in completion of the ‘My Important Health Information’ (MIHI) document to enable the ICU staff to more fully understand Jade as a person. A key section of the MIHI document focused on Jade's communication needs, particularly given that English was not her first language, and preparation for the use of appropriate symbols and clarification of a basic timetable in words that Jade would understand to indicate the sequence of events. The AHLDLN also contacted the community speech and language therapist to explore her previous input with Jade.

Jade's mother and the AHLDLN worked together to develop a list of appropriate symbols required for the ICU environment; for example, ‘nurse’, ‘physio’, ‘medication’, ‘suction’, ‘blood pressure’, ‘turning over’, ‘iPad’, ‘TV’ and items around personal care. Symbols were sourced from the Boardmaker (Tobii Dynavox) picture library for augmented communication. They settled on a symbol format around a timetable of ‘Now’, ‘Next’, ‘Then’ and ‘Finished’ and also agreed on producing much larger laminated symbols so the timetable could be placed on the wall directly opposite Jade's bed (Figure 1). Once Jade was extubated and able to engage with her mother and the nursing staff, it was clear that both the symbols and timetable were being used effectively: for example Jade's mother displayed the ‘brush hair’ symbol and Jade picked a brush up from table and brushed her hair. Further symbols were developed and added as Jade commenced more active rehabilitation with the physiotherapist and occupational therapist; for example, wheelchair, hoist, gym and ‘stand up’ and later food symbols after the removal of her naso-gastric tube.

Jade's needs associated with her learning disability were high priority for the AHLDLN and during the remainder of her admission the AHLDLN identified and addressed a range of nursing priorities, which are summarised in Box 3. The AHLDLN's involvement extended throughout Jade's admission and during her post-discharge period Jade's mother got in touch for further support and advice regarding community services.

Box 3.Learning disability nursing priorities for Jade

• Building a trusting relationship with Jade and her family
• Liaising with appropriate specialities regarding sedation and ventilation management
• Supporting the family while Jade remained intubated
• Liaising with the ward staff (nursing and medical) to have regular updates on Jade's condition and providing the space to speak openly around concerns or opinions of current care
• Advocating for Jade and her family regarding family involvement in daily care provided
• Emphasising the importance of Jade's environment and the safety she felt in her space
• Encouraging staff to create therapeutic relationships with Jade and her family (especially after the traumatic admission)
• Encouraging positive use of communication aids and allowing the family to lead the education on this to the staff team
• Providing support through documentation to allow Jade's family to explain the importance of knowing Jade to meet her needs
• Being present when required and knowing when to give Jade and her family their space
• Linking with the wider critical care recovery team and community learning disability services
• Encouraging staff to reflect on the reasonable adjustments they made to meet Jade's needs
• Being available when transferring to the ward to maintain consistency for Jade and her family

Supporting Jade's mother

Support for Jade's mother was a priority for both teams of nurses and she required significant reassurance and benefitted from being able to contact the AHLDLN directly by phone and text to raise concerns and ask questions. Jade was eventually transferred to a step-down ward and both she and her mother found this transition difficult, given that it involved a completely new team of staff and a much less intensive level of support. Communication with Jade's mother leading up to this transfer had not been optimal and unfortunately this led to a breakdown in some of the trust that had been previously established with her. The AHLDLN worked closely with the new ward staff team to build the relationship with Jade's mother and ensure reasonable adjustments were made for Jade, where possible. This included getting Jade a low-profile bed to support mobilisation, recommending one-to-one staffing overnight to offer reassurance to Jade and the introduction of further communication symbols to support discharge; for example, bus, shops, walking and reinforcing the names of her community support team. On Jade's day of discharge the AHLDLN met with Jade and her mother to ensure they were happy before leaving hospital and to discuss community support and referrals. The physiotherapist and occupational therapist had taken Jade for a final gym session and encouraged her to appreciate how far she had come and to continue with her physical rehabilitation at home.

Discussion

This case study has drawn on the collective reflections of the ICU senior charge nurse and the AHLDLN, which have followed a comprehensive multidisciplinary learning review by the critical care team and the learning disability liaison service involving the consultant nurse for learning disabilities. This review highlighted the positive impact of early contact with the AHLDLN as being key to Jade's recovery and the crucial role she played in supporting staff to understand Jade's communication and behavioural needs, leading to effective reasonable adjustments. Jade's discharge from ICU was delayed due to safety concerns, and it was acknowledged that communication with the receiving ward and Jade's mother during this period could have been better, and would have avoided some breakdown in trust between the hospital and family.

There is considerable evidence to demonstrate that adults with learning disabilities experience higher physical and mental health needs when compared with the general population (Tyrer et al, 2021; White et al, 2022). Furthermore, previous research has revealed that many people with learning disabilities have negative encounters within acute hospitals, including poorer safety outcomes (Louch et al, 2021). In a recent systematic review of the international evidence on experiences of adults with intellectual disabilities accessing acute hospital services (McCormick et al, 2021) the authors highlighted lack of communication, inadequate information sharing and issues related to compassionate care and respect. Other studies have identified an ongoing sense of nurses feeling unprepared to care for people with a learning disability and/or autism spectrum disorder in mainstream clinical settings (Cashin et al, 2022). There is also evidence that adult registered nurses have relatively low familiarity of the concept of reasonable adjustments (Wilson et al, 2022). It is against this background that Jade's case study provides a positive example of collaborative, rights-based care during one of the most exceptionally challenging periods for UK health services.

Jade's care episode took place during an unprecedented period and the impact of COVID-19 on patients, relatives and healthcare staff cannot be underestimated. There is evidence of the negative psychological impact on the UK nursing and midwifery workforce (Couper et al, 2022). Studies undertaken in ICUs during the early stages of the pandemic revealed significant stress, which was mitigated by strong teamwork, camaraderie, pride and fulfilment (Montgomery et al, 2021). One study of UK critical care nurses who worked between January and November 2021 identified that a third reported probable post-traumatic stress disorder, which was linked to increased job demands, particularly where there was a lack of resources, reduced learning opportunities and a lack of focus on staff wellbeing (McCallum et al, 2022).

A recent integrative review of learning disability nurse specialists in the UK and Ireland (Bur et al, 2021) identified that the central tenets of the role focus on person-centred care, organisational and practice development. One of the papers in this review (Brown et al, 2012) identified seven key elements of the AHLDLN role: advocating, collaborating, communicating, educating, facilitating, influencing and mediating. All elements were clearly shown during Jade's admission and were evident through the AHLDLN's direct involvement with Jade and her mother, promotion of collaboration between different acute services, facilitation of specific care interventions, role modelling and educating the critical care staff with regard to communication and behavioural support for Jade and, when necessary, mediating to improve relationships.

One of the most important features of Jade's care was the focus on reasonable adjustments made to ensure her individual care needs were addressed. The Equalities and Human Rights Commission (2023) identifies three categories of duties in relation to reasonable adjustments, all of which are applicable in hospital settings: duty to change a provision, criterion or practice; duty related to physical features; duty to provide auxiliary aids. In an evaluation of the AHLDLN role, MacArthur et al (2015) identified a fourth category relevant to people with learning disabilities, which is ‘behavioural and emotional adjustments’. The reasonable adjustments made for Jade were wide ranging and covered all these categories. The specific examples of nursing priorities and positive risk taking/reasonable adjustments identified in Boxes 1-3 are important to share, particularly given a recent scoping review on reasonable adjustments for people with learning disabilities in acute care (Moloney et al, 2021), which identified only six studies, with very few identifying actual applications in practice. Moloney et al's (2023) subsequent research on the experience of reasonable adjustments of parents of children with learning disabilities in acute care settings in Ireland revealed very limited positive examples of these being made.

Some key online learning resources for further information on meeting the needs of people with learning disabilities in healthcare settings are given in Box 4.

Box 4.Online learning resourcesScotlandOnce for NES: Learning Disabilities (TURAS portal, NHS Education for Scotland)https://learn.nes.nhs.scot/59009EnglandThe Oliver McGowan Mandatory Training on Learning Disability and Autism (elearning for healthcare portal, NHS England)https://www.e-lfh.org.uk/programmes/the-oliver-mcgowan-mandatory-training-on-learning-disability-and-autism/WalesPaul Ridd Foundationhttps://paulriddfoundation.org/

Conclusion

The COVID-19 pandemic created an unprecedented impact on the UK population and for the NHS in all four countries. People with learning disabilities experienced higher levels of mortality from COVID-19 infections, which has in part been linked to pre-existing health inequalities and limitations in the knowledge, experience and attitudes of health professionals. Jade's case study is a positive example of collaboration between health professionals, working in partnership with her family to make reasonable and achievable adjustments that allowed her to recover from an initial life-threatening event.

KEY POINTS

• People with learning disabilities are known to experience a range of health inequalities, leading to significantly reduced life expectancy
• Mortality rates from COVID-19 infection for people with learning disabilities were 3-6 times higher than for the general population
• Acute hospital learning disability liaison nurses have become an established feature across the UK and are recognised for their role in ensuring person-centred care and practice development
• People with learning disabilities have a right to reasonable adjustments in their hospital care and these should include adaptations to the environment, augmented communication, risk-based modification to policies and procedures, and behavioural and emotional support

CPD reflective questions

• Think about your experiences of caring for people with learning disabilities in general hospital or primary care settings. Do you feel you had the knowledge and confidence to make reasonable adjustments to support their care?
• What resources do you have locally to support people with learning disabilities in hospital, including in critical care?
• If you were caring for someone with a learning disability who was non-verbal how would you assess and plan their care?
• How might your own healthcare environment impact people with learning disabilities and how do you think it could be adapted?