Recommendations for research
This study has generated considerable evidence about the way in which inpatient hospital care is delivered to, and experienced by, children with LD and their parents. As highlighted by Northway,83 the identification of what inequalities exist, and for whom and in what circumstances, leads us to make the key following recommendations for research.
1. Patient safety: develop and validate an instrument for the assessment and management of risk in children with learning disability in hospital
It is evident that staff and parents feel that the safety needs of children with LD are not fully identified and met in hospital. Key barriers include a lack of appropriately trained staff who have the competence and confidence to deliver safe care, a lack of suitable resources, and issues with space and the environment. Research is required to develop and validate an instrument to assess and manage risk in children with LD in hospital, which can be linked directly to the identification and provision of reasonable adjustments. The instrument would be likely to empower health-care professionals, particularly nurses, in their interactions with families, as a result of enabling more informed discussions about risk and safety, with additional benefits for parents from the increased trust and confidence in staff, enabling the development of a true partnership in care. Alongside the development of the instrument should be a detailed review of the types of reasonable adjustments that children with LD require in hospital, along with the frequency with which these adjustments are required and the barriers to and facilitators of their being accommodated.
2. Learning disability liaison nurse posts: measure the impact of dedicated learning disability nurse provision in specialist and non-specialist children’s hospitals
We have provided evidence of a limited and highly variable LD service for children in hospital, valued by hospital staff and shown to have a positive impact on their perceptions of their capability to care for this group of patients. However, the provision of LD nurses was not shown to increase staff perceptions of capacity or confidence, or to increase how children with LD are valued within hospital, or their safety and their access to appointments. There is no clear guidance on how many LD nurses are needed to deliver safe and effective hospital care to children with LD or about the level at which they should be working. The Learning Disability Improvement Standards for NHS Trusts102 state that:
Trusts must have workforce plans that manage and mitigate the impact of the growing, cross-system shortage of qualified practitioners with a professional specialism in learning disabilities . . . [and] must demonstrate clinical and practice leadership and consideration of the needs of people with learning disabilities, autism or both, within local strategies to ensure safe and sustainable staffing.
To understand how we might begin to address these issues and inform service delivery and workforce planning, research is needed to measure the impact of dedicated LD roles on the care of children with LD in hospitals. Given the diversity of roles described in this report, it is important that this research captures the full range of LD posts in addition to LD nurses, who are embedded within the clinical setting but who are not employed specifically to work with patients with LD. This should include an evaluation of how the LD role is best operationalised in practice to have the greatest impact on children and families, as well as how we monitor and evaluate these roles to ensure that they are utilised effectively and efficiently, including carrying out a cost–benefit analysis.
3. Staff training
The issue of a lack of LD training at both undergraduate and postgraduate level was raised by staff from different professional groups and working in different hospitals. Research is needed to evaluate the impact of the forthcoming mandatory LD awareness training on staff, patients and families. Furthermore, we need to understand how well the new Nursing and Midwifery Council 2018 standards106 are being implemented in relation to LD and what difference, if any, they are making.
4. Patient- and family-centred care: there is a critical need to understand expectations of staff and parents in contemporary practice
Throughout our work we heard from parents about their perceptions and first-hand experience of what is referred to as family-centred care. The clearest voice in our data spoke to poor clarity in terms of roles and responsibilities, revealing a critical need to understand the expectations of staff and parents. There is a body of research that underpins this approach to care, but how that applies to contemporary practice remains unknown. Published work already informs us that interpretations are known to vary considerably, and that there are concerns that the child has been ‘lost’ within this unit of care. Partnership emerges as a concept that requires further clarification, as does the notion of negotiation. Underpinning this approach has always been a clear and agreed plan of care about who does what for the child when they are in hospital. Our data would suggest that this is at the core of variable practices. Good and less good practices were described, but, overall, ‘chance’ plays too big a part in there being a clear understanding of the parent’s role while their child is in hospital.
The term ‘parental participation’ first appeared in the literature in the 1980s. Health-care practices have changed significantly since that time. Recent studies have highlighted the lack of attention to cultural and societal changes in the delivery of care within this framework.98 We would argue for the need to understand family-centred care as it applies to contemporary practice. Further research examining the effects of family-centred care for children, their families, health-care professionals and health-care organisations, reflecting cultural diversity and norms, must be conducted. Importantly, this expanded understanding, from all of these perspectives, would clarify the role of the parent when their child is in hospital. Thus, a shared understanding that is communicated at the outset, where good practices of working with all parents prevail, would reduce the role of ‘chance’ that we observed. It is important to ensure that families do not feel that they are expected to provide input into the care of their child beyond their expectations or capabilities, or indeed for the full 24 hours of each day in hospital.
5. Use of mixed-methods studies: we need to maximise the potential of mixed methods to provide a comprehensive and meaningful account of hospital care
It is evident that, in our study, had we used only questionnaires as a source of evidence with parents and staff, we would have reported an incomplete story. For some, questionnaires will have been easier and less time-consuming to complete than answering questions in an interview, but the interviews allowed us to reach greater depth, and parents and staff clearly felt comfortable expressing their concerns as well as sharing good practice; inequalities not evident from questionnaires became apparent when talking with parents. Although questionnaires are considered easy to deliver, they may lack questions relevant to those in our care. So, to understand the full range of family experiences while in hospital, we need to maximise the potential of mixed methods to provide a comprehensive and meaningful account.
Limitations
In this four-phase study, both strengths and limitations have been reflected on. As this was a national study, collecting multiple sources of data within an NHS setting presented a number of challenges. Here we report the particular issues from each phase that could have had some impact on our final study findings.
Phase 1
We cannot say with certainty that our organisational mapping is complete or that our description of the LD nurse role is comprehensive. Although we collected over 2000 survey responses, our sampling method meant that we were not able to determine a meaningful response rate in terms of representativeness of different professional groups. Furthermore, participants were self-selecting, which means that the findings cannot be generalised with any degree of precision. In all participating sites, we were reliant on the local collaborator to distribute the survey to staff who had contact with children with and children without LD. It is possible that in non-children’s hospitals not all eligible staff were identified and given the opportunity to participate. Similarly, we depended on the local collaborator to identify senior staff who had the knowledge to answer the interview questions, and it is possible that we did not include those in the organisation who were the most informed, although we tried to address this limitation by holding at least two interviews per site. The NHS staff who participated in interviews were identified locally and encompassed a wide variety of roles (e.g. medical consultants, matrons, clinical nurse specialist and managers), which may have produced a lack of consistency in the data. At two sites (non-specialist hospitals), no staff agreed to be interviewed. The 30-minute interview was designed to encourage participation, but it did limit in-depth discussion around site practices. Although we ensured that more than one interview was conducted per site to ensure that all questions were addressed, this time constraint inevitably placed restrictions on the depth of qualitative data generated. Furthermore, staff interviews were relatively short (30–45 minutes) because of the clinical commitments of these staff. We did not set out to formally evaluate LD nurse provision as this was beyond the scope of our wider project. Hence, interviews did not specifically focus on the role, but rather asked about knowledge of the systems, practices and policies in place in the organisation. Key questions such as the rationale and decision-making behind the delivery of the LD nurse service and how much time dedicated LD nurses spend undertaking different components of their job description remain unanswered.
Phases 2 and 3
We cannot say with certainty that the sites, although selected objectively, are representative of all services caring for these children. Although the aim of the study was not to be proportionally representative of specialist children’s hospitals and non-specialist hospitals, children are more likely to receive treatment in their local hospital, which for many is unlikely to be a specialist hospital for children. If this study were repeated, a sample that better reflects this form of access might be incorporated. We relied heavily on the local principal investigator and their staff to identify and recruit families to our study, and to support the survey in phase 3. In one of our sites no children with LD were identified at all, which was surprising, as this site was a specialist children’s hospital. Pressures on NHS staff that have an impact on their time to deliver and participate in research was a major challenge, even though they received financial reimbursement for taking part in the study. Other limitations were in data collection methods; we were unable to use photography in some trusts, and our use of creative e-technologies in data collection was often challenged by local systems, despite us having ethics approval to use these. Concerns about the use of electronic diaries, for example, centred on data protection and confidentiality issues, and this resulted in a lack of choice for families of using this method. With regard to photography, some research and development departments put restrictions in place with the primary purpose of protecting the organisation’s reputation, and these restrictions were not conducive to giving children with LD and/or autism control over what they saw as important to capture. This was despite our reassurance that for these organisations we would not share any images beyond the research team.
Conclusions
At the start of this journey there were concerns about practice, and the delivery of hospital care to children with LD. There were a number of high-profile cases that demanded a sea-change. We sought to map this context of care and to take learning from the adult disability field and the associated policies to look at practice through a new lens. We have done that within the milieu in which inequalities exist; we needed to understand these inequalities and how they had an impact on the care of children in hospital. We knew at the outset that to understand these inequalities we needed to ask a range of stakeholders, that included children, and use multiple sources of data that would help us to build a picture of what is actually happening.
There are three key messages from our work.
Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with LD and their parents is much greater. Hence, if we address the issues for children with LD, all children will benefit.
Key to this is individualising care through the provision of reasonable adjustments. The key message was that multiple and compounding layers of complexity often surround the care of children with LD in hospital and that even those with the same diagnosis as another child with or without LD have unique needs that require staff to take an individualised approach to their care. It was this individualised approach that appeared to define parents’ understanding of quality care. Parents of children without LD tended not to draw on the concept of difference when thinking about the quality of their child’s care. However, children who also had additional learning or behavioural needs associated with ADHD, autism or dyslexia had an inpatient experience similar to that for children with LD. Staff therefore need to undertake training and gain experience to build their general skills and knowledge about children with LD and/or additional learning or behaviour needs, as well as generating knowledge about the individual child by proactively working in partnership with parents prior to the child’s admission. Training in LD needs to be firmly embedded in the undergraduate curriculum for all professional groups, as well as be consolidated in practice through mandated education that includes face-to-face learning with experts by experience. We believe that our conceptual model provides a framework for this training that can be tailored accordingly to different professional groups and different health-care settings. Parents want to be asked about their child’s needs. The same approach can be adopted for all children and families, asking ‘what do I need to know about you/your child for this admission?’.
We need to address the impact of children’s hospitalisation on parents’ health and well-being; trust is essential to ensuring that parents get a break from caring responsibilities. Key to this is staff working proactively with parents in advance of the child’s admission to identify any safety concerns and plan necessary reasonable adjustments to minimise risk. The development of an evidence-based risk assessment instrument would facilitate this process, as would a robust process for flagging patients with LD that focuses on alerting staff of the need for reasonable adjustments. Parents’ access to healthy and affordable food, comfortable beds and suitable places to unwind should be seen as essential requirements rather than optional extras.