How to improve hospital care for children with learning disabilities

Introduction

People with learning disabilities can have difficulty understanding complicated information or learning new skills. Adults with learning disabilities have more negative experiences of healthcare than adults in the general population; this includes discrimination, abuse and poor care. However, the experiences of children with learning disabilities are less well known.

NHS Improvement’s (2018) standards aim to improve the quality of care NHS trusts provide, including respecting and protecting the human rights of people with learning disabilities. To support patients with learning disabilities, the standards recommend that staff:

• Use modified communication;
• Work with patients, families and carers to plan and evaluate care and treatment;
• Have training on learning disabilities.

The researchers also recommend staff adjust the physical and sensory environment.

Previous research revealed that parents felt staff lacked knowledge about learning disabilities; however, these past studies were small and did not explore the way in which services are delivered across different hospital settings (Iacono et al, 2014). Children with learning disabilities often have more-complex needs than, and need different care from, children in the general population. However, their views and experiences are rarely recorded.

This article discusses a study by Oulton et al (2022), which assessed how well hospital services are meeting the needs of children with learning disabilities and their families. The researchers explored what helps and what prevents the delivery of equitable, high-quality care and services.

Initial research

The study included 24 hospitals in England, including all 15 specialist children’s hospitals. The researchers interviewed 65 senior managers, surveyed 2,261 staff members and examined policy documents. They found widespread variation in policy and practice in relation to children with learning disabilities. Many senior managers did not know whether their hospital had a learning disability policy. Only 45% of the hospitals had a system to alert staff about a child’s learning disability, which rarely specified the adjustments needed. Of all children’s hospitals, 53% had a dedicated learning disability liaison nurse.

Staff generally felt that children with learning disabilities were valued less and treated with less dignity than children without disabilities.

In-depth research

The researchers then examined seven hospitals in detail, to explore the experiences of staff, parents and children. They interviewed 63 children aged 5-16 years, both with and without learning disabilities, and asked their parents to complete a diary. They also interviewed 98 staff members.

Satisfaction surveys were also completed by:

• 803 children aged 5-16 years, many of whom had a long-term condition (n=355) and learning disabilities (n=198);
• 812 parents;
• 429 community staff members (including doctors, allied health professionals and healthcare assistants).

The researchers identified that individual staff members influenced the experiences of individual children – both with and without learning disabilities – and their families. Children and parents highlighted a lack of consistency in the attitudes and knowledge of staff; children did not always feel listened to, or involved in their own care.

Because children with learning disabilities often find new environments, and some procedures, distressing, the researchers concluded that reasonable adjustments in hospitals could help ensure they receive the same care as other children. Adjustments include using symbols and photos to communicate, and offering a private cubicle.

Hospitals differed on the quality of care provided and the suitability of the environment – for example, the availability of private cubicles, sensory resources and beds with rails. The researchers identified that less-flexible care had a greater negative impact on children with learning disabilities than on those without.

Parents whose children had learning disabilities reported being more concerned about safety than other parents, because their children needed more oversight. They felt that a minority of staff had negative attitudes; this had a lasting impact on some parents. Conversely, parents appreciated staff members who tailored their communication to meet their child’s needs.

Parents of children with learning disabilities were generally less satisfied with the healthcare they received than those of children without learning disbilities. They also felt the hospitals were less able to accommodate their child’s needs. However, surveys showed no differences between the two groups of parents in satisfaction with staff helpfaulness, access to hospital appointments or parents’ involvement in care. Likewise, children with and without learning disabilities rated their involvement in treatment similarly.

Some staff members reported struggling with a lack of knowledge about the non-medical needs of children with learning disabilities. This lack of training and confidence in how to care for a child with learning disabilities resulted in parents reporting feeling heavily relied upon.

Staff members could also find some terms unclear, which made it difficult to prepare adjustments in advance:

“They say ‘LD’ and that could mean autism, it could mean intellectual disability [or] behaviour needs or mental health needs. You never know.”

Why is this important?

These insights emphasise the importance of treating children with learning disabilities with respect and as individuals.

The research team developed guidance to help hospital staff improve the care they provide, and to help trusts meet NHS Improvement’s (2018) standards. They created a model for staff to make reasonable adjustments for children with learning disabilities by being PROACTIVE, and are creating animations for each element of the acronym:

• Partnership and parents: Work with parents before a hospital admission to prepare reasonable adjustments, negotiate care and explain hospital routines and ward facilities;
• Resources: Consider the need for adapted or specialist resources, such as symbols/photographs to help with communication, sensory equipment, bed bumpers and appropriate toys;
• Opportunity: View every encounter as an opportunity to develop knowledge about the child’s needs and improve their future hospital visits;
• Ask and advocate: Ask parents what their child’s needs are, rather than waiting to be told;
• Communication: Understand how the child usually communicates, and tailor communication to their needs;
• Time and timing: Allow time to provide information and to prepare for and carry out a procedure. Maintain the child’s routine as much as possible;
• Identification and involvement: Develop strategies to identify children with learning disabilities before they come to hospital. Consider how best to involve them in treatment decisions;
• Values: Treat every child as an individual, address them by name, and ensure they know who you are and your role. Be aware of potential sensitivities around a learning disability diagnosis and use appropriate language;
• Environment: Consider the best location for the child on a ward (eg in a cubicle or bay), taking account of noise sensitivity, light and other people.

What’s next?

The researchers also concluded that clear expectations are needed. For example, hospitals require improved flagging systems to enable staff to work with the child and their parents before admission so they can understand their individual needs and how the child communicates; this will allow them to include them in discussions. The researchers are developing a risk assessment tool to help identify needs and appropriate adjustments in advance, along with any risks associated with not making adjustments.

The study highlighted that, although parents of children with learning disabilities were less satisfied with their child’s hospital care than other parents, there was no difference in terms of access to appointments or involvement in care. Further work is, therefore, needed to explore satisfaction in more detail. The researchers have developed a patient-reported experience measure to assess the quality of hospital care for children with learning disabilities; it has not yet been evaluated.

Staff members need training and experience to build their skills and knowledge of children with learning disabilities. This year, the NHS is rolling out the Oliver McGowan Mandatory Training on Learning Disability and Autism. This aims to help staff feel confident in caring for people with learning disabilities.

The study supports and has informed Great Ormond Street Hospital’s five-year strategy to improve its care of children with learning disabilities. An improved system flags both a child’s learning disability and the adjustments they need. The strategy also includes a sensory resource library, new Safespaces beds (with high sides) and play workers who specialise in learning disabilities.