Journal of Pediatric Nursing (2015) 30, 78–86
Individualizing Hospital Care for Children and Young People With Learning Disabilities: It's the Little Things That Make the Difference Kate Oulton BA (Hons), MA, PhD a,⁎, Debbie Sell PhD a , Sam Kerry a , Faith Gibson PhD a,b a
Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England b London South Bank University, Greater London, England Received 13 June 2014; revised 4 October 2014; accepted 7 October 2014
Key words: Learning disability; Children and young people; Hospital care; Parent–staff relationship; Qualitative research
This ethnographic study sought parent, patient and staff views about the needs of children and young people with learning disability and their families during hospitalization. Reported here are data from 27 staff. The need for individualized care was identified, based on gaining appropriate experience and training, identifying the population, focussing on the “little things”, creating a safe, familiar environment and accessing and using appropriate resources. Parents played a central role in staff's delivery of individualized care. A lack of staff experience, knowledge and communication about learning disability can mean they rely on parent's input rather than forming a true partnership with them. © 2015 Elsevier Inc. All rights reserved.
Background LEARNING DISABILITY (LD) covers a wide spectrum of conditions associated with impairment in learning, including autism and Down syndrome. In the United Kingdom (UK), it is the preferred term of the Department of Health (2001) and the presence of a low intelligence quotient is a defining feature. However, terminology varies internationally, with ‘intellectual disability’ and ‘mental retardation’ also used. According to the 10th International Classification of Diseases (ICD-10) (World Health Organisation, 2011) a diagnosis of ‘mental retardation’ is considered ‘definite’ if reduced intellectual functioning results in “diminished ability to adapt to the daily demands ⁎ Corresponding author: Kate Oulton, BA (Hons), MA, PhD. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2014.10.006 0882-5963/© 2015 Elsevier Inc. All rights reserved.
of the normal social environment”, but notably there can be wide variations in the levels of skills developed by individuals. Learning disability does not include children and young people who have specific learning difficulties that may impair their educational attainment, e.g. auditory processing problems, but who are within the average range of intelligence. Moreover, those with global developmental delay, who fail to meet their expected developmental milestones in multiple areas of intellectual functioning do not always meet the criteria for learning disability as they grow older (American Psychiatric Association, 2013). People with learning disability (LD), estimated at approximately 60 million worldwide, represent one of the largest groups of people with lifelong disabilities (International Association for the Intellectual Study of Intellectual Disabilities, 2002). It is estimated that there are 1.5 million people with LD in England alone, approximately 286,000 of them are children and young people aged 0–17 years, with
Individualized Care for Children With Learning Disabilities numbers increasing steadily year on year (Emerson & Hatton, 2008). As well as having intellectual impairment, these children and young people may be physically disabled and have co-occuring impairments such as communication difficulties, sensory impairment, challenging behavior, mental health problems and/or complex long-term health needs, including dependence on technological equipment for their survival (Beresford, 1994; Emerson, Hatton, Felce, & Murphy, 2001; Roberts & Lawton, 2001). They have more hospital admissions and greater lengths of hospital stay than children without disabilities (Mahon & Kidirige, 2004), sometimes attending the same hospital several times in a week (Kennedy, 2010). In 2007, a UK charity for people with LD (Mencap) produced a report (Mencap, 2007) detailing the case histories of six adults with LD who had died in hospitals from avoidable conditions. Mencap called on the government to take “serious action” and an Independent Inquiry into access to healthcare for people with LD followed. This inquiry identified the invisibility of people with LD within health services, and the lack of priority given to identifying their particular health needs. Patients with LD were found to be treated less favorably than others, resulting in prolonged suffering and inappropriate care (Michael, 2008). Of particular relevance, is the finding that both parents and carers of adults and children with LD: Find their opinions and assessments ignored by healthcare professionals…They struggle to be accepted as effective partners in care by those involved in providing general healthcare; their complaints are not heard; they are expected to do too much of the care that should be provided by the health system and are often required to provide care beyond their personal resources.
Following this inquiry and a review of the deaths of 247 people with LD in southwest England, recommendations were made available to support hospitals in transforming the services they deliver to people with LD (Michael, 2008; Improving Health & Lives Learning Disabilities Observatory, 2012). What remains unclear is how far these can and should be applied to children and young people with LD. Their direct relevance to children and young people is not discussed and there is no guidance on the best way to implement them in the paediatric setting. Within the National Service Framework for Children, Young People and Maternity Services (Department of Health, 2004) the distinct service requirements of disabled children are recognized, as is their greater need for personalized, child-centred care. However, the specific needs of children and young people with LD and their families are not addressed. There is a dearth of literature focussing on the issues associated with the hospitalization of children and young people with LD and their families. The few researchers who have asked parents about their own and their child's experience reveal parental feelings of stress, anxiety and fear, an expectation to provide care while being under-used as a resource by professionals, a lack of trust and confidence in staff
79 and insufficient information and preparedness (Avis & Reardon, 2008; Brown & Guvenir, 2009; Carter, McArthur, & Cuncliffe, 2002; Oulton & Heyman, 2009; Sharkey et al., 2014). Communication with staff was reported as the biggest issue that needed addressing. Staff interviewed by Sharkey et al. (2014) perceived time pressures and lack of priority given to communicating directly with the child as major barriers. They found that parents could feel a “weight of responsibility” concerning their child's communication that could make them reluctant to go home and leave their child alone. Furthermore, parents of children and young people with severe LD have revealed that the occurrence of any problems in their child's care could devastate their trust in the overall system, thereby preventing future uptake of services (Oulton & Heyman, 2009). Also lacking is evidence of what it is like for hospital staff to care for this group of patients and their families. Research conducted in adult hospitals has shown that staff may not have the knowledge or experience to recognise the additional needs of patients with LD (Tuffrey-Wijne et al., 2014), leading to feelings of fear and anxiety and an over-reliance on patients informal carers (Sowney & Barr, 2006). Whether these same feelings are experienced by nurses or other staff working in the paediatric setting is not known. Presented here is one part of a story, that sought to understand the needs of children and young people with LD and their families when they come into hospital: focusing on data from health care professionals. A preliminary model for delivering individualized care to children and young people with LD will be presented, based on staff perceptions of the needs of these patients and the factors underpinning the way care is delivered to them, as well as ethnographic observations of practice. The extensive, rich data collected from children and young people with LD and parents warrant individual attention and therefore will be presented in future papers allowing data to contribute and build incrementally upon the model.
Method This was an ethnographic study involving (a) participant observation of a hospital ward, (b) informal conversations with ward-based staff (c) repeated ‘discussions’ with children and young people with LD and their parent(s), (d) a review of ward documentation and (e) structured interviews with hospital wide staff. The process of gaining access to the ward environment included a period of 3 months meeting staff, informing them about the study and obtaining consent. A total of 135 ward based staff agreed to be included. Observations were conducted over a period of 12 months and included medical ward rounds, multidisciplinary team meetings, psychosocial meetings and general ward activity. Observations of outpatient consultations involving children and young people who participated in the study were also conducted.
80 For the structured interviews with hospital wide staff, a purposive sampling frame was used to recruit participants from a broad range of professional backgrounds. Lead clinicians from 8 specialties were sent study information to share with their team and an invitation was placed in the hospital newsletter inviting staff to come forward for interview. Written informed consent was obtained from all participants. Interviews averaged 30–70 minutes and took place in a quiet room in the hospital. Each one was audio recorded and transcribed verbatim. Staff were first asked to describe their experience of caring for children and young people with LD and their families, allowing them to talk about issues they deemed important. They were then asked to describe the needs of these patients and their families, and to reflect on what worked well and what they found challenging. Staff perceptions on the availability and suitability of training and resources were sought.
Data Management and Analysis The Framework approach (Ritchie & Spencer, 1994) was used to organize and manage staff data into key themes, concepts and emergent categories, which were then charted in the form of a matrix and examined for patterns and connections. The method, developed in the late 1980s by researchers at the UK National Centre for Social Research (http://www.natcen.ac.uk), has recently become a popular analysis method in qualitative health research. It has five distinct, but highly interconnected stages: familiarization with the interview; identifying a thematic framework; applying codes to the entire data set (indexing); charting summarized data; mapping and interpretation. It is recognized as a useful method for comparing and contrasting data by themes across many cases, without losing the context of the individual's view. It is conducive to research involving multiple researchers and large data sets “where obtaining a holistic, descriptive overview of the entire data set is desirable” (Gale, Heath, Cameron, Rashid, & Redwood, 2013). In the present study, all members of the research team were involved in reviewing and refining the thematic framework, including a parent with nearly 20 years experience of accessing and using hospital services for her three children with LD. This parent was involved in all stages of the research process including obtaining ethical approval, data collection, analysis and dissemination. Her knowledge as an expert parent helped ensure data collection with children and young people and parents was carried out in an appropriate, accessible, sensitive and ethical manner. A study steering group comprising researchers and a range of hospital and community based professionals was also established. The group met throughout the project to monitor study progress, review data collection techniques and discuss avenues for dissemination.
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Findings The final sample of 27 hospital staff included 10 nurses and 10 allied health professionals (AHPs). Participants who came forward for interview tended to be experienced staff members with 10 or more years of clinical experience. It was noteworthy that the majority of participants had previously worked with children and young people with LD in more than one hospital and/or in the community. They reflected on their experience of working in different settings during the interview. All staff spoke passionately about the importance of meeting the needs of children and young people with LD and their families. They were well informed about the issues which affected how staff delivered care to this patient group. They described in-depth the complex physical and emotional needs of patients with LD and recognized that coming to hospital could be particularly stressful for them and their parents. Seeing children and young people with LD as individuals and prioritizing what was “important in their world” was reported as being the best approach to meeting their needs. One nurse described children and young people with LD as being “some of the best children to work with”, precisely because of their need for individualized care. A number of factors were found to underpin the delivery of individualized care to children and young people with LD, namely gaining appropriate experience and training, identifying the population, focussing on the “little things”, creating a safe, familiar environment and accessing and using appropriate resources. Developing a partnership with parents was central to each of these (Figure 1). Despite many examples
Figure 1 Factors underpinning the delivery of individualised care to children and young people with learning disability.
Individualized Care for Children With Learning Disabilities Table 1
Examples of good practice.
Theme Gaining appropriate knowledge and experience Identifying the population
Focusing on the ‘little things’
Creating a safe, familiar environment Using appropriate resources
Developing partnership with parents
Examples of good practice • Providing Makaton training to staff • Out-patient staff inform appropriate personnel if it is clearly documented in notes that patient has a LD. Patient details are then added to a database. • Music therapy • Trial of a ‘whiteboard’ daily planner to facilitate shared information between patients, parents and staff – includes free space for documentation of ‘other information’ • Conducting pre-op assessments on the ward • Offering cubicles where possible • Toys for those with sensory impairment • Height adjustable sinks • Mobile sensory units • Spending ten minutes at the beginning of every shift talking to parents and making shared plans for the day • Empowering parents to take a break
of good practice (Table 1), it was apparent that working in a pediatric tertiary hospital where the focus is on providing highly specialist, complex medical care for all its patients, could act as a barrier to staff's ability to identify and respond to the little things that make a big difference to those with LD.
Gaining Appropriate Experience and Training Much of what participants knew about how to work with children with LD had come from years of experience, rather than any specific training. Previous work in special needs schools, the community setting and life experience were reported by many as being invaluable. They felt that staff without such experience could fail to understand what these patients were capable of, making it more difficult for them to adapt their practice to meet their individualized needs. Nurses who took part in the study expressed particular concern about the lack of opportunity for pre-registration nursing students to interact with children and young people with LD during their training: I think it's the fact that the NHS has changed…you know as a student I remember feeding a child with cerebral palsy or LD and that was your job…you don't see nurses sitting doing that anymore and that's a really important aspect of care…also getting to know that child, building trust with them.
81 One nurse participant went so far as to describe preregistration training as “disablist” and “not fit for purpose”. The compartmentalization of nurse training and the movement of medical staff from speciality to speciality were identified as barriers to these professional groups gaining a “true understanding” of the holistic needs of children and young people with LD. Participants from a range of professional backgrounds shared similar concerns about specialist hospital settings. Here there is an ongoing tension between the provision of highly expert advice, treatment and care in relation to particular systems of the body and an overall holistic view. It was identified by a ward manager that a lack of knowledge about how to interact with children and young people with LD and manage challenging behavior could destabilize, bewilder or instil fear in staff, to the extent that they may not want to look after certain patients and worry about coming to work. Uncertainty and nervousness were also described in relation to the way junior staff interacted with “forthright families”. Hearing real life stories was reported by some as having had a significant impact on their appreciation of what matters to children and young people with LD and their families. Staff from different professional backgrounds identified a need for further training in how to communicate with children and young people with LD. They recognized that without such training staff were limited in how much they could truly engage with these patients and hear their voice: These children really find it difficult, because routine's really good for them. I think, sometimes, we just spring things on them. Then they need more time…more engagement, really. We end up traumatising them and then it takes longer the next time. I think it's the voice thing that I worry about, that they don't have a voice…I don't know what kind of damage we're doing along the way.
While participants recognized the importance of talking directly to children and young people with LD irrespective of their cognitive ability or ability to respond, they also recognized that it was easier and quicker for staff to defer directly to parents. Ethnographic observations of the ward and outpatient setting revealed that while most staff where kind and friendly to children and young people with LD, they often failed to explain things to them in a way that they could understand or include them in decisions about their care and treatment. It was observed that medics, in particular, discussed complex health information in front of patients with LD and directed questions at parents, without appearing to ascertain the child or young person's level of understanding, communicative ability, or preferences for hearing information. Staff who had received training in ‘Makaton’, a language program using signs and symbols to help people to communicate, highlighted this as being particularly valuable, although recognizing that unless used on a regular basis it was difficult to keep up their skills.
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Identifying Children and Young People With LD Identifying patients with LD was problematic. The varying ‘labels’ used to define this population and the wide range of medical conditions that were associated with it, was reported as being confusing for staff. In particular, participants highlighted difficulties distinguishing between children and young people with LD and those with challenging behavior, communication difficulties, physical impairment and developmental delay. This finding was supported by informal discussions with ward based staff, some of whom displayed uncertainty about what was meant by the term LD, as well as vagueness about which patients on the ward had this diagnosis. One participant felt that again part of the problem for ward-based nurses was the lack of priority given to LD in their pre-registration training: I think if you actually went onto wards now and asked what learning difficulties or disability was they probably would struggle to classify it or even know what it is…it's not something that's on their radar…because they don't have a lot of it in their training.
A number of participants highlighted the unhelpfulness of the LD label unless it was accompanied by information about what that diagnosis meant for each individual. As one nurse recognized there was a danger that without this information, staff would draw the wrong assumptions about what was needed: I think that the NHS, we like to fit people into a hole, so if you have autism then you must need A B and C when you come to hospital where that's not right, and trying to reeducate people about that.
There was an identified need for more detailed information about a child/young person's LD to be communicated between staff, both verbally and in written documentation. This finding was supported by analysis of medical notes and nursing handover sheets, which revealed wide variations in the level of information recorded. A number of barriers to this communication were identified, including a lack of time and prioritization of medical information: So, if I have said, you cannot give this child fluids because they're aspirating that will be taken on, but if I say when you feed Johnny could you please make sure he's got his favourite DVD on…isn't perceived as being that important in some ways, without realising that for that child it is.
A further issue was accessing what information there was about a CYP's diagnosis of LD. A number of AHPs reported having to see patients without complete understanding of their intellectual ability and/or communication needs because they could not find their medical notes or locate a nurse with the relevant information. In some instances, it was not until they talked to the parents that they discovered the child/young person had an LD. The reliance staff had on parents to provide information about their child was a theme running through the
data. However, a few participants also noted that junior nursing staff could lack the confidence to ask parents about their child's intellectual impairment, particularly if they were not certain they had a diagnosis of LD. In one example, failure to identify that a patient had a LD resulted in a family being inappropriately referred to the hospital social worker because the child was wearing nappies. In another it meant a child was initially benchmarked against an inaccurate baseline of cognitive functioning following their stroke. One participant who had recently trialled the use of a whiteboard daily planner to improve communication between patients, parents and staff felt this intervention had potential to overcome people making assumptions and could flag up if there was something specific about the patient that staff needed to know. Furthermore, it was seen as helping staff to be more confident in talking about LD, amidst a culture of fear about offending parents.
Focusing on the Little Things Staff recognized that a key part of individualizing care for CYP with LD was understanding the “little things” that made a big difference to them, such as their preferences for eating, taking medication, playing, communicating and interacting with others. Numerous examples were provided to illustrate their own and their colleagues attempts to ascertain and use this information to enhance the patient experience. One nurse, for example, described a young man with LD who had a particular anxiety about hygiene. Knowing this, she went out of her way to ensure that she always washed her hands in front of him, even if they did not need it. The use of communication booklets helped some staff to understand the individual needs of children and young people with LD. However, others felt that they lacked relevance to the hospital setting and it was reported that more often than not patients left them at home. Without these booklets, staff readily deferred to parents for advice on what things mattered most to their child. The quotation below, from a nurse, illustrates the complex interweaving of issues that could underlie the failure of staff to recognize and respond to the “little things” that make a difference to child/young person with LD even when these have been carefully planned for: Written everywhere…he gets extremely emotionally distressed with ringing of bells, telephones and alarms. For cubicle (own room), if possible…it's not been put on the handover sheet and he's been put in the bay nearest the nurses station…It's like…we know he needs a cubicle, but we haven't got one at the moment. I'm going, no, do you know the reason behind it? No. There is a 5% chance that he could die under the anaesthetic…that one little thing would make a difference.
A lack of communication between staff, poor understanding of the needs of children and young people with LD, a shortage of space and concerns about patient safety combined to exacerbate what was already a very stressful situation for this family. The potential emotional, physical
Individualized Care for Children With Learning Disabilities and financial cost from this child going down to theatre in great distress was highlighted. Another participant recalled a young person with LD nearly being deemed inappropriate for transplant surgery because staff had incorrectly assumed that he would not comply with the necessary medication regime. It was only through understanding what “little things” about taking medication were important to this child that the situation was resolved. The key message from participants was that the non-medical needs of children and young people with LD needed prioritizing alongside their medical needs.
Creating a Safe, Familiar Environment Hospitals were regarded as particularly challenging environments for children and young people with LD who could get extremely distressed when their routine was disrupted or they were in unfamiliar surroundings with “absolutely no points of reference for them apart from their parents”. Many participants described their efforts to maintain familiarity by minimizing the number of staff caring for these patients and trying to keep them on the same ward on each admission. One nurse described going to extreme lengths to accommodate patients with LD on her ward even when it was full, including putting a bed in the treatment or surgery room prior to their surgery. A number of participants highlighted the need to protect children and young people with LD from too much stimuli such as noise, lighting and motion. In particular, they described the challenges for these patients of having to wait for long periods in the outpatient setting and sharing a ward with other children. Participants also recognized the difficulty for parents who sometimes worried how other parents would respond to their child's behavior. Ethnographic observations of children and young people with LD and their parents in the outpatient setting brought these concerns to life. One young lady with LD became particularly distressed during her wait to be seen, hitting out at other patients as they walked passed. Another patient with LD needed to be constantly supervised and entertained as she walked repeatedly up and down the corridor for over an hour in between appointments. Some nurses saw it as good practice to offer patients with LD their own room on the ward, but in reality these were not always available. A number of participants discussed the challenge of caring for children and young people with LD following surgery, whose emotional needs were often best met through being nursed in a cubicle (personal room) but whose physical needs demanded a high-dependency bed in an open ward setting. Concern was also expressed that families were becoming increasing isolated and losing out on valuable support networks by the increased use of cubicles. ‘Sensory rooms’ with dedicated sensory equipment were identified as invaluable in helping children and young people with LD relax thereby reducing their anxiety. The familiarity of sensory equipment was recognized, along with the role it could have in building trust and helping those with LD to see hospitals as being less scary. The important role that play specialists had in
83 helping to manage the emotional needs of children and young people with LD also emerged. Dedicated sensory rooms and play specialists were seen as being in short supply, with some participants seeing themselves as lucky for having access to them.
Accessing and Using Appropriate Resources Nurses and AHPs highlighted that having access to appropriate non-medical equipment was vital to meeting the individualized needs of children and young people with LD. Those with access to height adjustable sinks and sophisticated hoist systems, for example, found these invaluable for maintaining patient independence. However, issues with the cost, maintenance and storage meant that appropriate equipment was not always readily available. Moreover, there was an identified problem of things going missing from wards. It was reported that a shortage of positioning aids and high-sided beds could sometimes compromise patient safety, particularly for those with challenging behavior or who do not sense danger. A lack of equipment could also prevent patients with LD from maximizing their potential, as well as compromise their dignity and privacy: I think one of the most disgusting, almost horrible, things about working with children with LD from an…it should never happen point of view is that the child may be fully continent and be hoisted onto the toilet at home. Then they come into the hospital, and because people either don't know how to, or don't have the equipment to do it, they put the child in pads. I just think that that is so degrading.
Another staff member recalled a patient with LD being given a bed bath only because the shower room was filled with broken, unused equipment. For long-stay patients with LD, a lack of appropriate feeding equipment could limit how quickly better feeding techniques could be established. While equipment was available for demonstration purposes, parents could be relied upon to source their own supply to use during their child's hospital stay. While it was seen as reasonable to ask parents to bring in equipment that was readily available at home, some participants questioned the acceptability of them having to source, pay for and transport items into hospital. The problem with the availability of costly items such as iPADs was raised by some staff who described their frustration at not being able to access them when they needed to because they had either gone missing or been locked away. The appropriateness of play equipment and hospital furniture for young people with LD was also raised as an issue. It was felt that teenagers for example with a LD should have better access to adult size furniture when engaging in activities usually associated with younger children, i.e. coloring.
Developing a Partnership With Parents It was evident that the nature of the relationship staff developed with parents was central to their delivery of
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individualized care to children and young people with LD. Participants described the role some parents played as providers of knowledge and information, thereby supporting staff to identify their child as having a LD and understand the “little things” that were important to them. They also described parent's role as monitors and providers of care, supporting staff to create a safe, familiar environment for the child and as providers of resources and equipment, supporting staff to deliver care appropriately. Participants appeared to highly value parent's input and a number specifically described working in partnership with them: You need to talk to them…have you been in hospital before, what do you do at home. What's your routine… how much do you want me to do…working out that balance with them.
However, some participants, all of whom were nurses, expressed concern that staff were overly reliant on parents, which prevented for them taking a break from their caring responsibilities: We expect a lot of these parents…we don't necessarily always think about that…these families are providing 24/7 care, usually with minimal support in the community…we then expect them to come into hospital…we do rely on them really heavily I think.
These same participants acknowledged that staff had a responsibility to negotiate with parents what role they wanted to take during their child's hospitalization: Well I don't think they do (have a break). Its one thing being the expert parent but…You've got to go in and negotiate the care, when would you like a break, what would you like to do, because this is probably the only time they're in a safe environment that they could go.
Despite this nurse's reference to the safe hospital environment, a number of participants recognized that parents of children and young people with LD could have particular concerns about the safety of their child while in hospital, which meant that establishing their trust was hugely important. Moreover, it was acknowledged that this trust could quickly be destroyed: It may be that you've cared for that patient fantastically for eleven and a half hours but in the half hour you weren't in the room the parents come back and they've been to the toilet and not been changed and that trust you have with the parents when they leave them in your care has gone. That doesn't affect you and that parent, it affects the rest of their stay, cos then they wont leave.
A further issue was staff assuming that parents of children and young people with LD had the necessary expertise to carry out routine caring tasks such as washing, without taking into account how parents may be affected by their child's changed health status or the different physical
environment in which they were being asked to provide such care: You see people that will just give the parent a bowl and go there you go, give us a shout if you need anything. You've got a parent there with a child with sheets all over the place, no towels, a table that's full of equipment, nowhere to put a bowl of water. That's hard enough.
Discussion Our study has highlighted the importance hospital staff place on taking an individualized approach to the care of children and young people with LD and their passion to improve the hospital experience of these patients. The factors underlying their ability to do this successfully were identified as having appropriate experience and training; being able to identify the population; focusing on the “little things”; creating a safe, familiar environment; and accessing and using appropriate equipment. While these have been presented as distinct themes there was strong interconnectivity between them. Of importance for practice, is that hospital staff understand the enormity of the emotional and physical costs to children and young people with LD, and the financial cost to a hospital Trust that can arise when the “little things” that are important to these patients are unrecognized or overlooked. Changes are needed in the way that diagnoses of LD are communicated between those caring for children and young people with LD, both verbally and in writing, such that these “little things” can be easily identified and acted upon. The findings support previous research (Sharkey et al., 2014) highlighting time as a key barrier to communication about LD in the hospital setting. The finding that a lack of knowledge about LD can generate fear and anxiety in hospital staff supports that reported in the adult setting (Sowney & Barr, 2006; Tuffrey-Wijne et al., 2014). This highlights a fundamental need to review the way that staff receive training in LD and how to care for these patients. The powerful impact that hearing personal stories had on participants indicates a role for incorporating these into pre and post registration training, much in the same way that a short film known as ‘Barbara’s story’ (Barbara's Story) has been used to train thousands of staff in one UK hospital about the needs of patients with dementia, in an attempt to change care and attitudes. Staff identified that parents played a central role in supporting them to deliver individualized care to children and young people with LD. They helped staff take their existing knowledge of LD and apply it to their particular child. It can be seen that parent's role as translators of knowledge is likely to be greatest when both the level of knowledge staff hold about children and young people with LD in general (nomothetic knowledge) and the availability of knowledge about an individual child/young person (idiographic knowledge) is poor. The findings here show
Individualized Care for Children With Learning Disabilities that a lack of exposure to patients with LD in training and a lack of meaningful documentation about LD at the ward level can result in staff having to rely on parent's input rather than being able to form a true partnership with them. The findings illustrate why parents might feel concerned about leaving their child with LD unaccompanied in hospital for even a short time. Of significance is how quickly parental trust can be lost in the hospital setting and the impact this has on future relations with staff, something that has previously been reported by parents of children and young people with severe LD (Oulton & Heyman, 2009). A recent innovation at the study site is a dedicated LD nurse who has begun introducing strategies which will address some of the findings from this study, including using patient notes to identify and flag up those with LD, offering double appointment times and training staff in how to make reasonable adjustments to ensure patients with LD have the same experience and outcomes as other patients. Further research is needed to understand what impact this role has on staff's ability to deliver individualized care to these patients. Moreover, greater understanding is needed of the impact that pre-registration training about LD has on staff knowledge and confidence to care.
Limitations The findings are based on the views of a large number of hospital staff from a wide range of professional backgrounds, most of which had considerable experience of working with children and young people with LD to draw on. However, sample representativeness should not be assumed. For example, because the participants were unavoidably self-selecting, more highly motivated staff may have been overrepresented. Furthermore the views expressed represented their experiences not just at the study site but previous places of work. Qualitative interviews lend themselves to the relating of anecdotes, potentially overemphasizing poor practice. The depiction of service deficiencies should not obscure the examples of good provision also described.
Conclusion The model of individualized care presented here is only one part of the story. Parent and patient data will allow the model to be built upon incrementally in future papers. Data collected from parents confirm the vital role they play in staff's delivery of individualized care to patients with LD and the issues that arise, for them and their child, when the parent–professional relationship is not based on a true partnership. Data collected from children and young people with LD support the suggestion from staff that it is the “little things” that make the biggest difference to these patients. A key priority for staff has to be understanding
85 these “little things” and finding ways of ensuring they are addressed in the hospital environment.
Acknowledgments Thank-you to Great Ormond Street Hospital Children's Charity for funding this study and to the hospital staff who took part.
References American Psychiatric Association (2013). Intellectual Disability (Intellectual Developmental Disorder). In: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, American Psychiatric Association. (Ed). Arlington, VA, p.33. Avis, M., & Reardon, R. (2008). Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: A qualitative study. J Child Health Care, 12, 7–17. Barbara's story. Accessed on 4.9.2014. http://www.youtube.com/watch?v= DtA2sMAjU_Y&feature=share&list=UUBJBH2MFKrX6lf8bJ7_ZGWQ Beresford, B. (1994). Positively parents: Caring for a severely disabled child. York: Social Policy Research Unit. Brown, F. J., & Guvenir, J. (2009). The experiences of children with learning disabilities, their carers and staff during a hospital admission. Br J Learn Disabil, 37, 110–115. Carter, B., McArthur, E., & Cuncliffe, M. (2002). Dealing with uncertainty: Parental assessment of pain in their children with profound special needs, 38, 449–457. Department of Health (2001). Valuing people: A new strategy for learning disability for the 21st century. London: DH. Department of Health (2004). National service framework for children and young people and maternity service. Disabled children and young people and those with complex health needs. London: HMSO. Emerson, E., & Hatton, C. (2008). Learning disabilities in England. Centre for Disability Research: Lancaster. Emerson, E., Hatton, C., Felce, D., & Murphy, G. (2001). Learning disabilities: The fundamental facts. London: The Foundation for People with Learning Disabilities. Gale, N., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for the analysis of qualitative data in multidisciplinary health research. BMC Med Res Methodol, 13, 117, http:// dx.doi.org/10.1186/1471-2288-13-117. Improving Health and Lives Learning Disabilities Observatory (2012). Confidential inquiry into premature death of people with learning disabilities. Bristol: IHAL. International Association for the Intellectual Study of Intellectual Disabilities (IASSID). Fact sheet: Aging and intellectual disabilities. (2002). [www.iassid.org]. Kennedy, I. (2010). Getting it right for children and young people: Overcoming cultural barriers in the NHS so as to meet their needs. London: Department of Health. Mahon, M., & Kidirige, M. S. (2004). Patterns of admissions for children with special needs to the paediatric assessment unit. Arch Dis Child, 89, 165–169. Mencap (2007). Death by indifference. London: Mencap. Michael, J. (2008). Healthcare for all: Report of the independent inquiry into access to healthcare for people with learning disabilities. London: Department of Health [Available from www.Iahpld.org.uk]. Oulton, K., & Heyman, B. (2009). Devoted protection: How parents of children with severe learning disabilities manage risk. Health Risk Soc, 11, 303–319.
86 Ritchie, J., & Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman, & R. D. Burgess (Eds.), Analyzing qualitative data (pp. 173–194). London: Routledge. Roberts, K., & Lawton, D. (2001). Acknowledging the extra care parents give their disabled children. Child Care Health Dev, 27, 307–319. Sharkey, S., Lloyd, C., Tomlinson, R., Thomas, E., Martin, A., Logan, S., et al. (2014). Communicating with disabled children when inpatients: Barriers and facilitators identified by parents and professionals in a qualitative study. Health Expect, http://dx.doi.org/10. 1111/hex.12254.
K. Oulton et al. Sowney, M., & Barr, O. G. (2006). Caring for adults with intellectual disabilities: Perceived challenges for nurses in accident and emergency. J Adv Nurs, 55, 36–45. Tuffrey-Wijne, I, Goulding, L, Gordon, V, Abraham, E, Giatras, N, Edwards, C, et al. (2014). The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: Evidence from a mixed-methods study. BMC Health Services Research, 4, 432–444. World Health Organisation (2011). International statistical classification of diseases and related health problems—10th revision. Geneva, Switzerland: WHO.
Individualizing Hospital Care for Children and Young People With Learning Disabilities: It's the Little Things That Make the Difference Kate Oulton BA (Hons), MA, PhD a,⁎, Debbie Sell PhD a , Sam Kerry a , Faith Gibson PhD a,b a
Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England b London South Bank University, Greater London, England Received 13 June 2014; revised 4 October 2014; accepted 7 October 2014
Key words: Learning disability; Children and young people; Hospital care; Parent–staff relationship; Qualitative research
This ethnographic study sought parent, patient and staff views about the needs of children and young people with learning disability and their families during hospitalization. Reported here are data from 27 staff. The need for individualized care was identified, based on gaining appropriate experience and training, identifying the population, focussing on the “little things”, creating a safe, familiar environment and accessing and using appropriate resources. Parents played a central role in staff's delivery of individualized care. A lack of staff experience, knowledge and communication about learning disability can mean they rely on parent's input rather than forming a true partnership with them. © 2015 Elsevier Inc. All rights reserved.
Background LEARNING DISABILITY (LD) covers a wide spectrum of conditions associated with impairment in learning, including autism and Down syndrome. In the United Kingdom (UK), it is the preferred term of the Department of Health (2001) and the presence of a low intelligence quotient is a defining feature. However, terminology varies internationally, with ‘intellectual disability’ and ‘mental retardation’ also used. According to the 10th International Classification of Diseases (ICD-10) (World Health Organisation, 2011) a diagnosis of ‘mental retardation’ is considered ‘definite’ if reduced intellectual functioning results in “diminished ability to adapt to the daily demands ⁎ Corresponding author: Kate Oulton, BA (Hons), MA, PhD. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2014.10.006 0882-5963/© 2015 Elsevier Inc. All rights reserved.
of the normal social environment”, but notably there can be wide variations in the levels of skills developed by individuals. Learning disability does not include children and young people who have specific learning difficulties that may impair their educational attainment, e.g. auditory processing problems, but who are within the average range of intelligence. Moreover, those with global developmental delay, who fail to meet their expected developmental milestones in multiple areas of intellectual functioning do not always meet the criteria for learning disability as they grow older (American Psychiatric Association, 2013). People with learning disability (LD), estimated at approximately 60 million worldwide, represent one of the largest groups of people with lifelong disabilities (International Association for the Intellectual Study of Intellectual Disabilities, 2002). It is estimated that there are 1.5 million people with LD in England alone, approximately 286,000 of them are children and young people aged 0–17 years, with
Individualized Care for Children With Learning Disabilities numbers increasing steadily year on year (Emerson & Hatton, 2008). As well as having intellectual impairment, these children and young people may be physically disabled and have co-occuring impairments such as communication difficulties, sensory impairment, challenging behavior, mental health problems and/or complex long-term health needs, including dependence on technological equipment for their survival (Beresford, 1994; Emerson, Hatton, Felce, & Murphy, 2001; Roberts & Lawton, 2001). They have more hospital admissions and greater lengths of hospital stay than children without disabilities (Mahon & Kidirige, 2004), sometimes attending the same hospital several times in a week (Kennedy, 2010). In 2007, a UK charity for people with LD (Mencap) produced a report (Mencap, 2007) detailing the case histories of six adults with LD who had died in hospitals from avoidable conditions. Mencap called on the government to take “serious action” and an Independent Inquiry into access to healthcare for people with LD followed. This inquiry identified the invisibility of people with LD within health services, and the lack of priority given to identifying their particular health needs. Patients with LD were found to be treated less favorably than others, resulting in prolonged suffering and inappropriate care (Michael, 2008). Of particular relevance, is the finding that both parents and carers of adults and children with LD: Find their opinions and assessments ignored by healthcare professionals…They struggle to be accepted as effective partners in care by those involved in providing general healthcare; their complaints are not heard; they are expected to do too much of the care that should be provided by the health system and are often required to provide care beyond their personal resources.
Following this inquiry and a review of the deaths of 247 people with LD in southwest England, recommendations were made available to support hospitals in transforming the services they deliver to people with LD (Michael, 2008; Improving Health & Lives Learning Disabilities Observatory, 2012). What remains unclear is how far these can and should be applied to children and young people with LD. Their direct relevance to children and young people is not discussed and there is no guidance on the best way to implement them in the paediatric setting. Within the National Service Framework for Children, Young People and Maternity Services (Department of Health, 2004) the distinct service requirements of disabled children are recognized, as is their greater need for personalized, child-centred care. However, the specific needs of children and young people with LD and their families are not addressed. There is a dearth of literature focussing on the issues associated with the hospitalization of children and young people with LD and their families. The few researchers who have asked parents about their own and their child's experience reveal parental feelings of stress, anxiety and fear, an expectation to provide care while being under-used as a resource by professionals, a lack of trust and confidence in staff
79 and insufficient information and preparedness (Avis & Reardon, 2008; Brown & Guvenir, 2009; Carter, McArthur, & Cuncliffe, 2002; Oulton & Heyman, 2009; Sharkey et al., 2014). Communication with staff was reported as the biggest issue that needed addressing. Staff interviewed by Sharkey et al. (2014) perceived time pressures and lack of priority given to communicating directly with the child as major barriers. They found that parents could feel a “weight of responsibility” concerning their child's communication that could make them reluctant to go home and leave their child alone. Furthermore, parents of children and young people with severe LD have revealed that the occurrence of any problems in their child's care could devastate their trust in the overall system, thereby preventing future uptake of services (Oulton & Heyman, 2009). Also lacking is evidence of what it is like for hospital staff to care for this group of patients and their families. Research conducted in adult hospitals has shown that staff may not have the knowledge or experience to recognise the additional needs of patients with LD (Tuffrey-Wijne et al., 2014), leading to feelings of fear and anxiety and an over-reliance on patients informal carers (Sowney & Barr, 2006). Whether these same feelings are experienced by nurses or other staff working in the paediatric setting is not known. Presented here is one part of a story, that sought to understand the needs of children and young people with LD and their families when they come into hospital: focusing on data from health care professionals. A preliminary model for delivering individualized care to children and young people with LD will be presented, based on staff perceptions of the needs of these patients and the factors underpinning the way care is delivered to them, as well as ethnographic observations of practice. The extensive, rich data collected from children and young people with LD and parents warrant individual attention and therefore will be presented in future papers allowing data to contribute and build incrementally upon the model.
Method This was an ethnographic study involving (a) participant observation of a hospital ward, (b) informal conversations with ward-based staff (c) repeated ‘discussions’ with children and young people with LD and their parent(s), (d) a review of ward documentation and (e) structured interviews with hospital wide staff. The process of gaining access to the ward environment included a period of 3 months meeting staff, informing them about the study and obtaining consent. A total of 135 ward based staff agreed to be included. Observations were conducted over a period of 12 months and included medical ward rounds, multidisciplinary team meetings, psychosocial meetings and general ward activity. Observations of outpatient consultations involving children and young people who participated in the study were also conducted.
80 For the structured interviews with hospital wide staff, a purposive sampling frame was used to recruit participants from a broad range of professional backgrounds. Lead clinicians from 8 specialties were sent study information to share with their team and an invitation was placed in the hospital newsletter inviting staff to come forward for interview. Written informed consent was obtained from all participants. Interviews averaged 30–70 minutes and took place in a quiet room in the hospital. Each one was audio recorded and transcribed verbatim. Staff were first asked to describe their experience of caring for children and young people with LD and their families, allowing them to talk about issues they deemed important. They were then asked to describe the needs of these patients and their families, and to reflect on what worked well and what they found challenging. Staff perceptions on the availability and suitability of training and resources were sought.
Data Management and Analysis The Framework approach (Ritchie & Spencer, 1994) was used to organize and manage staff data into key themes, concepts and emergent categories, which were then charted in the form of a matrix and examined for patterns and connections. The method, developed in the late 1980s by researchers at the UK National Centre for Social Research (http://www.natcen.ac.uk), has recently become a popular analysis method in qualitative health research. It has five distinct, but highly interconnected stages: familiarization with the interview; identifying a thematic framework; applying codes to the entire data set (indexing); charting summarized data; mapping and interpretation. It is recognized as a useful method for comparing and contrasting data by themes across many cases, without losing the context of the individual's view. It is conducive to research involving multiple researchers and large data sets “where obtaining a holistic, descriptive overview of the entire data set is desirable” (Gale, Heath, Cameron, Rashid, & Redwood, 2013). In the present study, all members of the research team were involved in reviewing and refining the thematic framework, including a parent with nearly 20 years experience of accessing and using hospital services for her three children with LD. This parent was involved in all stages of the research process including obtaining ethical approval, data collection, analysis and dissemination. Her knowledge as an expert parent helped ensure data collection with children and young people and parents was carried out in an appropriate, accessible, sensitive and ethical manner. A study steering group comprising researchers and a range of hospital and community based professionals was also established. The group met throughout the project to monitor study progress, review data collection techniques and discuss avenues for dissemination.
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Findings The final sample of 27 hospital staff included 10 nurses and 10 allied health professionals (AHPs). Participants who came forward for interview tended to be experienced staff members with 10 or more years of clinical experience. It was noteworthy that the majority of participants had previously worked with children and young people with LD in more than one hospital and/or in the community. They reflected on their experience of working in different settings during the interview. All staff spoke passionately about the importance of meeting the needs of children and young people with LD and their families. They were well informed about the issues which affected how staff delivered care to this patient group. They described in-depth the complex physical and emotional needs of patients with LD and recognized that coming to hospital could be particularly stressful for them and their parents. Seeing children and young people with LD as individuals and prioritizing what was “important in their world” was reported as being the best approach to meeting their needs. One nurse described children and young people with LD as being “some of the best children to work with”, precisely because of their need for individualized care. A number of factors were found to underpin the delivery of individualized care to children and young people with LD, namely gaining appropriate experience and training, identifying the population, focussing on the “little things”, creating a safe, familiar environment and accessing and using appropriate resources. Developing a partnership with parents was central to each of these (Figure 1). Despite many examples
Figure 1 Factors underpinning the delivery of individualised care to children and young people with learning disability.
Individualized Care for Children With Learning Disabilities Table 1
Examples of good practice.
Theme Gaining appropriate knowledge and experience Identifying the population
Focusing on the ‘little things’
Creating a safe, familiar environment Using appropriate resources
Developing partnership with parents
Examples of good practice • Providing Makaton training to staff • Out-patient staff inform appropriate personnel if it is clearly documented in notes that patient has a LD. Patient details are then added to a database. • Music therapy • Trial of a ‘whiteboard’ daily planner to facilitate shared information between patients, parents and staff – includes free space for documentation of ‘other information’ • Conducting pre-op assessments on the ward • Offering cubicles where possible • Toys for those with sensory impairment • Height adjustable sinks • Mobile sensory units • Spending ten minutes at the beginning of every shift talking to parents and making shared plans for the day • Empowering parents to take a break
of good practice (Table 1), it was apparent that working in a pediatric tertiary hospital where the focus is on providing highly specialist, complex medical care for all its patients, could act as a barrier to staff's ability to identify and respond to the little things that make a big difference to those with LD.
Gaining Appropriate Experience and Training Much of what participants knew about how to work with children with LD had come from years of experience, rather than any specific training. Previous work in special needs schools, the community setting and life experience were reported by many as being invaluable. They felt that staff without such experience could fail to understand what these patients were capable of, making it more difficult for them to adapt their practice to meet their individualized needs. Nurses who took part in the study expressed particular concern about the lack of opportunity for pre-registration nursing students to interact with children and young people with LD during their training: I think it's the fact that the NHS has changed…you know as a student I remember feeding a child with cerebral palsy or LD and that was your job…you don't see nurses sitting doing that anymore and that's a really important aspect of care…also getting to know that child, building trust with them.
81 One nurse participant went so far as to describe preregistration training as “disablist” and “not fit for purpose”. The compartmentalization of nurse training and the movement of medical staff from speciality to speciality were identified as barriers to these professional groups gaining a “true understanding” of the holistic needs of children and young people with LD. Participants from a range of professional backgrounds shared similar concerns about specialist hospital settings. Here there is an ongoing tension between the provision of highly expert advice, treatment and care in relation to particular systems of the body and an overall holistic view. It was identified by a ward manager that a lack of knowledge about how to interact with children and young people with LD and manage challenging behavior could destabilize, bewilder or instil fear in staff, to the extent that they may not want to look after certain patients and worry about coming to work. Uncertainty and nervousness were also described in relation to the way junior staff interacted with “forthright families”. Hearing real life stories was reported by some as having had a significant impact on their appreciation of what matters to children and young people with LD and their families. Staff from different professional backgrounds identified a need for further training in how to communicate with children and young people with LD. They recognized that without such training staff were limited in how much they could truly engage with these patients and hear their voice: These children really find it difficult, because routine's really good for them. I think, sometimes, we just spring things on them. Then they need more time…more engagement, really. We end up traumatising them and then it takes longer the next time. I think it's the voice thing that I worry about, that they don't have a voice…I don't know what kind of damage we're doing along the way.
While participants recognized the importance of talking directly to children and young people with LD irrespective of their cognitive ability or ability to respond, they also recognized that it was easier and quicker for staff to defer directly to parents. Ethnographic observations of the ward and outpatient setting revealed that while most staff where kind and friendly to children and young people with LD, they often failed to explain things to them in a way that they could understand or include them in decisions about their care and treatment. It was observed that medics, in particular, discussed complex health information in front of patients with LD and directed questions at parents, without appearing to ascertain the child or young person's level of understanding, communicative ability, or preferences for hearing information. Staff who had received training in ‘Makaton’, a language program using signs and symbols to help people to communicate, highlighted this as being particularly valuable, although recognizing that unless used on a regular basis it was difficult to keep up their skills.
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Identifying Children and Young People With LD Identifying patients with LD was problematic. The varying ‘labels’ used to define this population and the wide range of medical conditions that were associated with it, was reported as being confusing for staff. In particular, participants highlighted difficulties distinguishing between children and young people with LD and those with challenging behavior, communication difficulties, physical impairment and developmental delay. This finding was supported by informal discussions with ward based staff, some of whom displayed uncertainty about what was meant by the term LD, as well as vagueness about which patients on the ward had this diagnosis. One participant felt that again part of the problem for ward-based nurses was the lack of priority given to LD in their pre-registration training: I think if you actually went onto wards now and asked what learning difficulties or disability was they probably would struggle to classify it or even know what it is…it's not something that's on their radar…because they don't have a lot of it in their training.
A number of participants highlighted the unhelpfulness of the LD label unless it was accompanied by information about what that diagnosis meant for each individual. As one nurse recognized there was a danger that without this information, staff would draw the wrong assumptions about what was needed: I think that the NHS, we like to fit people into a hole, so if you have autism then you must need A B and C when you come to hospital where that's not right, and trying to reeducate people about that.
There was an identified need for more detailed information about a child/young person's LD to be communicated between staff, both verbally and in written documentation. This finding was supported by analysis of medical notes and nursing handover sheets, which revealed wide variations in the level of information recorded. A number of barriers to this communication were identified, including a lack of time and prioritization of medical information: So, if I have said, you cannot give this child fluids because they're aspirating that will be taken on, but if I say when you feed Johnny could you please make sure he's got his favourite DVD on…isn't perceived as being that important in some ways, without realising that for that child it is.
A further issue was accessing what information there was about a CYP's diagnosis of LD. A number of AHPs reported having to see patients without complete understanding of their intellectual ability and/or communication needs because they could not find their medical notes or locate a nurse with the relevant information. In some instances, it was not until they talked to the parents that they discovered the child/young person had an LD. The reliance staff had on parents to provide information about their child was a theme running through the
data. However, a few participants also noted that junior nursing staff could lack the confidence to ask parents about their child's intellectual impairment, particularly if they were not certain they had a diagnosis of LD. In one example, failure to identify that a patient had a LD resulted in a family being inappropriately referred to the hospital social worker because the child was wearing nappies. In another it meant a child was initially benchmarked against an inaccurate baseline of cognitive functioning following their stroke. One participant who had recently trialled the use of a whiteboard daily planner to improve communication between patients, parents and staff felt this intervention had potential to overcome people making assumptions and could flag up if there was something specific about the patient that staff needed to know. Furthermore, it was seen as helping staff to be more confident in talking about LD, amidst a culture of fear about offending parents.
Focusing on the Little Things Staff recognized that a key part of individualizing care for CYP with LD was understanding the “little things” that made a big difference to them, such as their preferences for eating, taking medication, playing, communicating and interacting with others. Numerous examples were provided to illustrate their own and their colleagues attempts to ascertain and use this information to enhance the patient experience. One nurse, for example, described a young man with LD who had a particular anxiety about hygiene. Knowing this, she went out of her way to ensure that she always washed her hands in front of him, even if they did not need it. The use of communication booklets helped some staff to understand the individual needs of children and young people with LD. However, others felt that they lacked relevance to the hospital setting and it was reported that more often than not patients left them at home. Without these booklets, staff readily deferred to parents for advice on what things mattered most to their child. The quotation below, from a nurse, illustrates the complex interweaving of issues that could underlie the failure of staff to recognize and respond to the “little things” that make a difference to child/young person with LD even when these have been carefully planned for: Written everywhere…he gets extremely emotionally distressed with ringing of bells, telephones and alarms. For cubicle (own room), if possible…it's not been put on the handover sheet and he's been put in the bay nearest the nurses station…It's like…we know he needs a cubicle, but we haven't got one at the moment. I'm going, no, do you know the reason behind it? No. There is a 5% chance that he could die under the anaesthetic…that one little thing would make a difference.
A lack of communication between staff, poor understanding of the needs of children and young people with LD, a shortage of space and concerns about patient safety combined to exacerbate what was already a very stressful situation for this family. The potential emotional, physical
Individualized Care for Children With Learning Disabilities and financial cost from this child going down to theatre in great distress was highlighted. Another participant recalled a young person with LD nearly being deemed inappropriate for transplant surgery because staff had incorrectly assumed that he would not comply with the necessary medication regime. It was only through understanding what “little things” about taking medication were important to this child that the situation was resolved. The key message from participants was that the non-medical needs of children and young people with LD needed prioritizing alongside their medical needs.
Creating a Safe, Familiar Environment Hospitals were regarded as particularly challenging environments for children and young people with LD who could get extremely distressed when their routine was disrupted or they were in unfamiliar surroundings with “absolutely no points of reference for them apart from their parents”. Many participants described their efforts to maintain familiarity by minimizing the number of staff caring for these patients and trying to keep them on the same ward on each admission. One nurse described going to extreme lengths to accommodate patients with LD on her ward even when it was full, including putting a bed in the treatment or surgery room prior to their surgery. A number of participants highlighted the need to protect children and young people with LD from too much stimuli such as noise, lighting and motion. In particular, they described the challenges for these patients of having to wait for long periods in the outpatient setting and sharing a ward with other children. Participants also recognized the difficulty for parents who sometimes worried how other parents would respond to their child's behavior. Ethnographic observations of children and young people with LD and their parents in the outpatient setting brought these concerns to life. One young lady with LD became particularly distressed during her wait to be seen, hitting out at other patients as they walked passed. Another patient with LD needed to be constantly supervised and entertained as she walked repeatedly up and down the corridor for over an hour in between appointments. Some nurses saw it as good practice to offer patients with LD their own room on the ward, but in reality these were not always available. A number of participants discussed the challenge of caring for children and young people with LD following surgery, whose emotional needs were often best met through being nursed in a cubicle (personal room) but whose physical needs demanded a high-dependency bed in an open ward setting. Concern was also expressed that families were becoming increasing isolated and losing out on valuable support networks by the increased use of cubicles. ‘Sensory rooms’ with dedicated sensory equipment were identified as invaluable in helping children and young people with LD relax thereby reducing their anxiety. The familiarity of sensory equipment was recognized, along with the role it could have in building trust and helping those with LD to see hospitals as being less scary. The important role that play specialists had in
83 helping to manage the emotional needs of children and young people with LD also emerged. Dedicated sensory rooms and play specialists were seen as being in short supply, with some participants seeing themselves as lucky for having access to them.
Accessing and Using Appropriate Resources Nurses and AHPs highlighted that having access to appropriate non-medical equipment was vital to meeting the individualized needs of children and young people with LD. Those with access to height adjustable sinks and sophisticated hoist systems, for example, found these invaluable for maintaining patient independence. However, issues with the cost, maintenance and storage meant that appropriate equipment was not always readily available. Moreover, there was an identified problem of things going missing from wards. It was reported that a shortage of positioning aids and high-sided beds could sometimes compromise patient safety, particularly for those with challenging behavior or who do not sense danger. A lack of equipment could also prevent patients with LD from maximizing their potential, as well as compromise their dignity and privacy: I think one of the most disgusting, almost horrible, things about working with children with LD from an…it should never happen point of view is that the child may be fully continent and be hoisted onto the toilet at home. Then they come into the hospital, and because people either don't know how to, or don't have the equipment to do it, they put the child in pads. I just think that that is so degrading.
Another staff member recalled a patient with LD being given a bed bath only because the shower room was filled with broken, unused equipment. For long-stay patients with LD, a lack of appropriate feeding equipment could limit how quickly better feeding techniques could be established. While equipment was available for demonstration purposes, parents could be relied upon to source their own supply to use during their child's hospital stay. While it was seen as reasonable to ask parents to bring in equipment that was readily available at home, some participants questioned the acceptability of them having to source, pay for and transport items into hospital. The problem with the availability of costly items such as iPADs was raised by some staff who described their frustration at not being able to access them when they needed to because they had either gone missing or been locked away. The appropriateness of play equipment and hospital furniture for young people with LD was also raised as an issue. It was felt that teenagers for example with a LD should have better access to adult size furniture when engaging in activities usually associated with younger children, i.e. coloring.
Developing a Partnership With Parents It was evident that the nature of the relationship staff developed with parents was central to their delivery of
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individualized care to children and young people with LD. Participants described the role some parents played as providers of knowledge and information, thereby supporting staff to identify their child as having a LD and understand the “little things” that were important to them. They also described parent's role as monitors and providers of care, supporting staff to create a safe, familiar environment for the child and as providers of resources and equipment, supporting staff to deliver care appropriately. Participants appeared to highly value parent's input and a number specifically described working in partnership with them: You need to talk to them…have you been in hospital before, what do you do at home. What's your routine… how much do you want me to do…working out that balance with them.
However, some participants, all of whom were nurses, expressed concern that staff were overly reliant on parents, which prevented for them taking a break from their caring responsibilities: We expect a lot of these parents…we don't necessarily always think about that…these families are providing 24/7 care, usually with minimal support in the community…we then expect them to come into hospital…we do rely on them really heavily I think.
These same participants acknowledged that staff had a responsibility to negotiate with parents what role they wanted to take during their child's hospitalization: Well I don't think they do (have a break). Its one thing being the expert parent but…You've got to go in and negotiate the care, when would you like a break, what would you like to do, because this is probably the only time they're in a safe environment that they could go.
Despite this nurse's reference to the safe hospital environment, a number of participants recognized that parents of children and young people with LD could have particular concerns about the safety of their child while in hospital, which meant that establishing their trust was hugely important. Moreover, it was acknowledged that this trust could quickly be destroyed: It may be that you've cared for that patient fantastically for eleven and a half hours but in the half hour you weren't in the room the parents come back and they've been to the toilet and not been changed and that trust you have with the parents when they leave them in your care has gone. That doesn't affect you and that parent, it affects the rest of their stay, cos then they wont leave.
A further issue was staff assuming that parents of children and young people with LD had the necessary expertise to carry out routine caring tasks such as washing, without taking into account how parents may be affected by their child's changed health status or the different physical
environment in which they were being asked to provide such care: You see people that will just give the parent a bowl and go there you go, give us a shout if you need anything. You've got a parent there with a child with sheets all over the place, no towels, a table that's full of equipment, nowhere to put a bowl of water. That's hard enough.
Discussion Our study has highlighted the importance hospital staff place on taking an individualized approach to the care of children and young people with LD and their passion to improve the hospital experience of these patients. The factors underlying their ability to do this successfully were identified as having appropriate experience and training; being able to identify the population; focusing on the “little things”; creating a safe, familiar environment; and accessing and using appropriate equipment. While these have been presented as distinct themes there was strong interconnectivity between them. Of importance for practice, is that hospital staff understand the enormity of the emotional and physical costs to children and young people with LD, and the financial cost to a hospital Trust that can arise when the “little things” that are important to these patients are unrecognized or overlooked. Changes are needed in the way that diagnoses of LD are communicated between those caring for children and young people with LD, both verbally and in writing, such that these “little things” can be easily identified and acted upon. The findings support previous research (Sharkey et al., 2014) highlighting time as a key barrier to communication about LD in the hospital setting. The finding that a lack of knowledge about LD can generate fear and anxiety in hospital staff supports that reported in the adult setting (Sowney & Barr, 2006; Tuffrey-Wijne et al., 2014). This highlights a fundamental need to review the way that staff receive training in LD and how to care for these patients. The powerful impact that hearing personal stories had on participants indicates a role for incorporating these into pre and post registration training, much in the same way that a short film known as ‘Barbara’s story’ (Barbara's Story) has been used to train thousands of staff in one UK hospital about the needs of patients with dementia, in an attempt to change care and attitudes. Staff identified that parents played a central role in supporting them to deliver individualized care to children and young people with LD. They helped staff take their existing knowledge of LD and apply it to their particular child. It can be seen that parent's role as translators of knowledge is likely to be greatest when both the level of knowledge staff hold about children and young people with LD in general (nomothetic knowledge) and the availability of knowledge about an individual child/young person (idiographic knowledge) is poor. The findings here show
Individualized Care for Children With Learning Disabilities that a lack of exposure to patients with LD in training and a lack of meaningful documentation about LD at the ward level can result in staff having to rely on parent's input rather than being able to form a true partnership with them. The findings illustrate why parents might feel concerned about leaving their child with LD unaccompanied in hospital for even a short time. Of significance is how quickly parental trust can be lost in the hospital setting and the impact this has on future relations with staff, something that has previously been reported by parents of children and young people with severe LD (Oulton & Heyman, 2009). A recent innovation at the study site is a dedicated LD nurse who has begun introducing strategies which will address some of the findings from this study, including using patient notes to identify and flag up those with LD, offering double appointment times and training staff in how to make reasonable adjustments to ensure patients with LD have the same experience and outcomes as other patients. Further research is needed to understand what impact this role has on staff's ability to deliver individualized care to these patients. Moreover, greater understanding is needed of the impact that pre-registration training about LD has on staff knowledge and confidence to care.
Limitations The findings are based on the views of a large number of hospital staff from a wide range of professional backgrounds, most of which had considerable experience of working with children and young people with LD to draw on. However, sample representativeness should not be assumed. For example, because the participants were unavoidably self-selecting, more highly motivated staff may have been overrepresented. Furthermore the views expressed represented their experiences not just at the study site but previous places of work. Qualitative interviews lend themselves to the relating of anecdotes, potentially overemphasizing poor practice. The depiction of service deficiencies should not obscure the examples of good provision also described.
Conclusion The model of individualized care presented here is only one part of the story. Parent and patient data will allow the model to be built upon incrementally in future papers. Data collected from parents confirm the vital role they play in staff's delivery of individualized care to patients with LD and the issues that arise, for them and their child, when the parent–professional relationship is not based on a true partnership. Data collected from children and young people with LD support the suggestion from staff that it is the “little things” that make the biggest difference to these patients. A key priority for staff has to be understanding
85 these “little things” and finding ways of ensuring they are addressed in the hospital environment.
Acknowledgments Thank-you to Great Ormond Street Hospital Children's Charity for funding this study and to the hospital staff who took part.
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