The number of children with long-term conditions, with and without LD, who require complex care is growing, resulting in the increased use of health-care resources as these children spend prolonged periods of time in hospital for both acute and planned admissions and for both medical and surgical care. The quality of the hospital stay and the extent to which hospital services meet the needs of all children have been studied for some time; the body of literature is expansive. Inequalities have been highlighted but not examined in any detail, particularly in relation to children with LD. The impact of a hospital environment on these populations has rarely been considered in the context of a shared narrative. Rather, studies tend to concentrate on the views of particular stakeholders, such as children, parents or staff, and not on how services are delivered within and across particular hospital settings. For the purposes of this report, we present relevant learning from the literature, focusing predominantly on a number of recently published systematic and narrative reviews.
Adults with learning disability
The majority of studies that do focus on the hospital care of patients with LD relate to the care of adults. Although it is not within the remit of this report to present a review of this literature, three major pieces of work are of particular relevance: a systematic review of hospital experiences of people with LD in general acute hospitals,33 a narrative review of acute care nurses’ experiences of nursing patients with LD,34 and a national mixed-methods study35 of the factors preventing the implementation of strategies to promote a safer environment for patients with LD in English hospitals.
The systematic review of 16 studies of the hospital experiences of people with LD32 revealed seven overarching themes ‘related largely to failures of hospitals and staff to meet patient needs’. The key factors contributing to such failures were staff attitudes and their limited knowledge and skills concerning LD, and a failure at the systems level to make necessary adjustments, resulting in carers being relied on both for care and to advocate for appropriate treatment. Facilitators of care were exceptions rather than common experiences. The narrative review of the experiences of acute care nurses34 similarly found that nurses felt underprepared when caring for adult patients with LD, experienced challenges communicating with them and had ambiguous expectations of paid and unpaid caregivers.
There was also an overlap in findings from the large national study,35 which revealed the main barriers to better and safer hospital care for people with LD to be (1) the invisibility of patients with LD in hospitals, (2) poor staff understanding, (3) a lack of consistent and effective carer involvement and staff misunderstanding of the carer role, and (4) a lack of clear lines of responsibility and accountability. The provision of a learning disability liaison nurse with authority to change practice and the support of senior management were found to be the main enablers of safe care, along with ward managers who facilitated a positive ward culture and ensured the consistent implementation of reasonable adjustments.
Children with learning disability
Few studies focus specifically on the care of ‘children with LD’ in hospital. More often than not, researchers instead focus on particular impairments, such as communication, or specific diagnoses, such as cerebral palsy, without drawing out findings applicable to those with LD. Furthermore, studies related to disabled children or to those with special needs, complex or chronic health needs or who are medically fragile or technological-dependent can include mixed samples of children with and children without LD, or an unspecified sample, which makes it difficult to determine the findings that are relevant to those with LD.
Among those studies that are focused on the care of children with LD in hospital, very few directly include children with LD as participants. A structured review and synthesis of qualitative studies reporting on the experience of disabled children as inpatients36 concluded that their experience was ‘variable and not always optimal’. The main issue was related to communication, which emerged as a key factor in whether the child and family had a positive or a negative experience. Of particular relevance to children with LD was the finding that during outpatient appointments health professionals often talked to parents instead of the child, resulting in feelings of disempowerment,37 and that although parents valued the inclusion of their disabled child, they were worried that children with communication disorders would be misunderstood.38 Importantly, only two of the eight studies included in this review focused specifically on the care of children with LD and, in these, only two individual children were interviewed. Of significance is that these two children, despite talking positively about nursing staff, were reported to be ‘less positive in general about their hospital stay than their parents’.39 A recent ethnographic study, one of the few to include observation and interviews with hospitalised children with LD,40 revealed the importance of staff not making assumptions about the capabilities and wishes of these patients. Examples were provided of too much and too little information and involvement, with associated feelings of uncertainty or fear and worry. Observations of practice revealed how important the ‘little things’ are to these patients, such as particular objects or activities, and the anxiety that they can experience when these are not available. Maintaining their routine, keeping them occupied and avoiding waiting were also found to be central to these patients’ well-being in hospital.
Relationship between parents of children with learning disability and staff
The small body of evidence relating to the care of children with LD in hospital mostly focuses on parents’ views and relationships with staff. The importance of parents and professionals working in partnership during any child’s hospital admission is well documented in the context of family-centred care,41 but parents’ central connection to their child in a health-care system relationship is also essential. Family-centred care has been positioned as an approach that encompasses the whole family as the ‘unit of care’; however, recent work has suggested that some parents regard themselves as the ‘care recipient’,42 supporting other work that, in this ‘unit of care’, the child is lost.43 We do not know what children think about this approach to care, but we do know that having parents nearby is central to their experience,44,45 reinforcing the need for a positive and trusting relationship between parents and hospital staff.
What do parents say?
Much of the existing evidence about the relationship that parents of children with LD have with hospital staff has been captured in a recent systematic review12 specifically about patient safety vulnerabilities in this population and a meta-narrative46 of the experiences of parents of children with LD in hospital. A key theme of the systematic review was the reliance staff had on parents being present to ‘supervise, protect and advocate for the care of their child’.12 Furthermore, it was reported that the understanding of the individual needs of children with LD could be compromised by assumptions staff make about their behaviour, cognitive ability or experience of pain. It was concluded that ‘when healthcare workers understand and are responsive to children’s individual needs and their intellectual disability, they are better placed to adjust care delivery processes to improve care quality and safety’12 during children’s hospitalisation. The meta-narrative of parents’ experiences of children with LD in hospital46 revealed their sense of being ‘more than a parent’ during this time as a result of their monitoring, protecting and advocating role and feeling expected to take responsibility. They also experienced uncertainty in relation to staff roles and responsibilities, and whether staff had the capacity and knowledge to provide safe, high-quality care to their child. The importance of staff knowing the child and working in partnership with parents also emerged. Adding to these two reviews is a more recent paper reporting on the views of parents of hospitalised children with LD,47 which adds to our understanding of what working in partnerships with professionals means to them. A genuine partnership was characterised by seven key elements: preparation, accessibility, reliability, trust, negotiation, expertise and respect.
The findings from these reviews support the theory of devoted protection put forward by Oulton and Heyman48 in their exploratory study about parenting children with severe LD. They found that parents adopted a risk-averse approach to care across all settings, including in hospital, which meant that they felt complete, unbounded responsibility for their child’s health and well-being. This included never leaving the child alone with someone they did not trust completely; when parents did leave their child, the occurrence of any problems could destroy their trust and prevent them from doing this in the future. They expressed apprehension that the specialist knowledge they held about their child was lacking in others, anger at not being listened to, and concern that their dedicated commitment was unequalled. A feeling that professionals devalued both them and their child with LD was also reported. Wider descriptions of parenting roles and responsibilities for disabled children, not specific to hospital, are also relevant to understanding what it might mean for them to accompany their child into hospital, with parents feeling that asking for support is a sign of failure and inability to cope,49,50 being so overwhelmed that they neglect their own needs,51 wanting to relinquish their responsibility because they feel that they are being taken advantage of52 or becoming increasingly expert so that their sense of responsibility becomes self-perpetuating and invisible to others.48,53,54
What do staff say?
Although staff views about the care of patients with LD are captured almost entirely in relation to adults, some recently published small-scale studies offer some understanding of what it is like for hospital staff to care for children with LD. One ethnographic study55 included interviews with 23 staff members across a range of professional groups working in a specialist children’s hospital and revealed the need for children with LD to receive individualised care based on staff gaining appropriate experience and training, identifying the population, focusing on the ‘little things’, creating a safe, familiar environment, and accessing and using appropriate resources. Parents were seen to play a central role. It emerged that a lack of staff experience, knowledge, confidence and communication about LD can mean that they rely on parents’ input rather than forming a true partnership with parents. The compartmentalisation of nurse training and the movement of medical staff from specialty to specialty were identified as barriers to these professional groups gaining a ‘true understanding’ of the holistic needs of children with LD. A lack of content on developmental disability in the undergraduate curriculum for both doctors and nurses56,57 has been expressed elsewhere. More recently, Lewis et al.58 interviewed eight nurses working on an acute admission paediatric ward in a general hospital in Australia, who described that caring for children with LD was in some ways similar to caring for children without LD, in that the goals of keeping them happy and getting them well and back home to normality were the same. Medical diagnosis and treatment were reported to guide care irrespective of other factors. However, further evidence emerged of the need for increased vigilance and additional time to meet the needs of these patients and to keep them safe, as well as the importance of routine, familiarity and working in partnership with parents to negotiate care responsibilities.
Children and young people without learning disability and their parents
There has been an increase in research conducted with children without LD, including those with long-term conditions, to understand the hospital experience from their perspective. This large body of evidence has shifted in focus from a predominantly parental to a child perspective, with an emphasis on the use of qualitative research. Children and their parents may often disagree on what the child’s experience in the hospital is really like,59 describing differing perceptions on issues such as safety, decision-making and lack of privacy.60–62 Children’s descriptions can be captured using themes from Coyne and Conlon:61 fears about the ward environment and hospital, investigations and treatments, being alone, and what might happen.63 What helps are people: their characteristics, activities, environment and outcome.60
Parents describing their experiences of care have prioritised important hospital processes, such as effective clinical care, efficiency, safety and security, timeliness, and patient- and family-centred care.64,65 Open communication and a willingness to share information are priorities for parents. ‘Respect and valuing of individual expertise by health professionals and an environment conducive to negotiation, allow both parent caregivers and the child input in deciding the type and extent of involvement and participation with which they feel most comfortable’.66
What we learnt from the literature comes predominately from small-scale, single-site studies highlighting the need to examine how hospital care is delivered to, and experienced by, children with LD and their parents at a national level. Furthermore, no studies have directly compared the views of parents of hospitalised children with and children without LD, which means that we currently lack evidence of what things affect all families and what things are unique to the learning disabled population. The central focus of research about the care of children with LD in hospital has been staff and parents, rather than the experiences of children themselves. Children with LD were at the centre of our study and, wherever possible, their views and experiences were captured first hand. Children’s experiences of hospitalisation are, in the main, mediated by adults, parents/family members and health-care staff; it was important in our study to capture all of these views.