The experiences of parents

The aim of this chapter is to present the findings of data collected from 63 parents (42 with a child with LD and 21 with a child without LD) during phase 2 (Table 10). To facilitate inclusion and account for the challenges of collecting data in the hospital environment, multiple methods were utilised. Every parent completed a home interview, 38 chose to complete a hospital diary, 48 chose to complete a safety review form and 11 took photographs. Interviews were conducted within 1 week of the child’s discharge from hospital. This time period varied owing to the child’s needs as they recovered at home and other demands on parents’ time (e.g. other children, work or their own health needs). The vast majority of interviews were conducted in the family home. Interviews lasted an average of 90 minutes.

The chapter is constructed primarily around the interviews of parents whose children had LD and is supplemented by findings from the parent diaries, safety review form and photographs. Each RQ is addressed as we present parents’ views on how well the needs of their child with LD are identified and met in hospital, as well as perceptions of their own role and the impact hospitalisation had on their health and well-being. Comparisons are made with data collected from parents of children without LD. The barriers to and facilitators of children with LD receiving equal access to high-quality hospital care that meets their particular needs are summarised at the end of each section. Keeping with the tradition of qualitative research, a balance of quotations and strength of comments are reported in preference to numerical reporting. Where it was felt relevant, to place emphasis on a certain pattern, then reference to ‘number of’ has been included.

For children with LD to be able to receive high-quality hospital care that meets their particular needs, the full breadth of these needs, medical and non-medical, first has to be understood by hospital staff. We provide evidence to show that, in the main, insufficient attention is paid to identifying and meeting the particular needs of children with LD. We first describe parents’ views of their child with LD as having unique needs related to LD that distinguish them from other children, and which require staff to adopt a highly individualised approach to their care. In the second section, we describe parent experiences of what happens in practice, either before or during the hospital admission, that prevents or facilitates staff developing an understanding of the unique needs of each child. We provide evidence of three different approaches taken by staff – proactive, reactive and passive – and the implications of each. The third section focuses on parents’ perceptions of whether or not their child’s particular needs were met in hospital, including barriers and facilitators in relation to their physical care needs and the psychological, social and environmental aspects of their health and well-being.

Children with learning disability are not like other children

Many parents drew distinctions between their child with LD and children without LD in terms of their reaction to being in hospital and their needs during that time, which has important implications when considering the barriers to and facilitators of hospital staff identifying and meeting these needs. One parent reported a conversation that she had had with one staff member:

We have plenty of special needs children come through our doors. Yes, you do, and like every other child, every child is different. Special needs is different again . . . [Child’s] got special needs but the other children in her class don’t have the same needs as what she has, do you know? It’s all completely different.

Many parents described the limitations of the ability of their child with LD to understand what is happening to and around them, and how these made it difficult for parents to reassure them, reason with them, and leave them alone, and unattended, for even short periods. This begins before hospital admission, when the build-up to coming into hospital for a child with LD can be particularly challenging, especially if the child is in pain:

She was desperate. I mean, she was crying and begging us. ‘Hospital now. Take me.’ . . . The build-up to it was horrendous . . . It’s difficult, the way that you’ve got to treat her and talk to her. If it was one of my [other children] I could explain quite happily, even my 7-year-old, but when it’s on [child’s] mind, she’s so repetitive . . . it is constant 12 hours of, ‘My back, my back done. Go now’. It’s constant. She doesn’t stop . . . at 2 o’clock in the morning, she’ll be shouting up, ‘My back. Doctor’.

This parent went on to highlight the emotional impact on her child of her admission being cancelled at the last minute, on the fourth attempt:

That was just horrendous. She screamed all the way home . . . It’s the psychological, with a child like her, with the special needs, and the autism and the repetitiveness, you can’t just say, ‘Oh, it’s been cancelled’ . . . they couldn’t help it either. It was just frustrating.

Another parent described the multiple challenges associated with her child having to wait hours for his operation without being able to eat:

. . . when you’re trying to manage a child with high anxiety and who’s on repeat mode for nearly 5 hours, it’s distressing to see him constantly try and reassure himself and not understanding why he’s not being allowed to have anything to eat. He’s pleading with you, ‘I’m starving, please, can I have some food?’ I mean, you feel terrible, you just feel like the worst person.

In addition to the emotional aspect of hospitalisation, parents identified added concerns associated with their children not being able to ask for help, either through a lack of understanding of how to do so, limited verbal or non-verbal communication skills, or restricted physical ability, for example to use a call button. Equally, the child’s ability to follow instructions or answer questions could be compromised if appropriate adjustments were not made: ‘Because everything goes slowly in the world of Down syndrome and [child] just needs that extra time.’ Concerns were also expressed about a lack of safety awareness in some children with LD, with one parent saying that she was not able ‘to let her guard down’. The inability of children with LD to ‘walk in and fight their own corner’ was also highlighted.

Adding to these issues was the challenging medical symptoms that children with LD can experience, which could mean that no one knows how best to care for and treat them:

I think when children are as complicated as him everybody struggles . . . there’s just no answers. . . . So, I just feel that, he needs to be treated as any other child should be treated, and sometimes that is a battle, which it shouldn’t be, should it?

Some parents reflected on the difference of being in hospital with their child with LD and being there with their other children. One mother described this in terms of having ‘a different level of worry’ that ‘filled her with dread’, and another said:

Children that haven’t got special needs . . . they get on with it. Like, I could take [child’s] older sibling on surgical ward and he’d go in and he could be quite clinical. You could speak to him on that level, on a more adult level, and tell him and get on with it, and he’ll come out, and yes, I had that done, there’s nothing special about it, you know?

The key message was that there are often multiple and compounding layers of complexity surrounding 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. As discussed in later chapters, 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, those who had additional learning or behavioural needs associated with attention-deficit hyperactivity disorder (ADHD), autism or dyslexia had an inpatient experience that showed similarities to that of children with LD:

Because she’s got ADHD, she has all this energy. If the nurse was OK, she would talk to them. So, it was all about their personality. How their personality came over to her. If she felt, ‘no’, she wouldn’t talk to them. She wouldn’t let them examine her, wouldn’t let them touch her, but there were just the certain ones. ‘You know, I don’t mind him doing it. I don’t mind her doing it.’ Yes. She had to have that feeling of safeness.

In particular, parents of children with LD pointed to the challenge of their child being in an unfamiliar environment, with unfamiliar people, with times when very little was happening and without their normal routine. There was a perception that some staff see all children with LD as having the same needs, a form of inequity, or underestimate the impact that small things can have on their emotional well-being. In addition, staff caseloads may limit the time that they have for each child. In the following chapters, we show that, although these factors could apply to all children in hospital, the magnitude of effect was usually more significant for children with LD.

Identifying the particular needs associated with a child’s learning disability

For children with LD to receive high-quality hospital care that meets their particular needs, the full breadth of their medical and non-medical needs must be understood by hospital staff. In the majority of cases, parents reported staff taking a passive approach to this, developing their knowledge more by luck than by judgement, through what they happened to observe (or not) during the child’s admission and what the parent happened (or not) to tell them (parent quotation 1; see Appendix 9). As one parent described, staff showed a complete lack of awareness about what having a LD diagnosis meant in terms of her child’s cognitive and communicative abilities:

No nurses came to even talk to her. Yes, they were loving my daughter a lot, they were giving her love, but they did not ask any questions of what she’s capable of doing and what not.

Clearly, a lack of enquiry about the abilities of children with LD does not preclude staff being kind to them (parent quotation 2; see Appendix 9) and will not necessarily have an impact on the quality of care provided. However, as one parent explained, assumptions about her child’s level of understanding were often based on their physical impairment and a label in the notes rather than knowledge of them as an individual. This might have an impact on their expectations of the child, with examples of staff not explaining things before doing them or of the child being excluded from discussions. In more than one example, there was a lack of realisation from staff about a child with LD having a visual impairment, including one young girl who was blind being asked to point out items in a picture.

Many parents talked about the admission process being focused on medical-related needs, such as whether or not the child had any allergies and their medication regime, at the expense of needs regarding particular equipment, food preferences, moving and handling, positioning and sensory needs. Parents cited a number of reasons why staff may not pay attention to a child’s learning and/or communication needs, including them being dismissive, lacking time or understanding of the need to do so, or feeling uncomfortable about asking:

They just saw, ‘[child] 5, PEG [percutaneous endoscopic gastrostomy] fitted’. It’s like no-one actually sat there and went, ‘[child], 5, PEG fitted, has severe cerebral palsy’, and it was like the cerebral palsy thing just didn’t exist . . . I’d like to think it’s not ignorance but whether it’s just the unknown . . . whether it was sheer nerves . . . or are they going to offend the parents?

Parents would not automatically offer relevant information about their child. Rather, parents often assumed that staff knew more than they did, which was based on parents knowing their child’s diagnosis, such as cerebral palsy, or forgetting that other people did not know their child the way they did. A common issue nearly all parents faced was the repeated request from staff for the same information about their child. This still tended to be for medical information relating to a diagnosis or the reason for their admission rather than related to LD: ‘When you do eventually see a doctor, or anybody else, they all ask you the same questions over and over again’. This request for information might be made in front of the child, with little or no thought given to the child’s level of cognition or the distress that this may (unintentionally) cause, which could be avoided:

I just had to keep explaining and going through it. I feel sometimes when I’m explaining then it makes him worse, because he knows he has it. He struggles and you can tell he does. People pick up on it, but, obviously, because it was different people coming in and out constantly, I had to keep repeating it.

It’s like interrogation but it does wear you down . . . It’s like War and Peace every time.

Even when armed with specific information about the uniqueness of each child’s diagnosis and comorbidities, staff often relied on parents to provide a greater depth of information, which over time proved to be a source of frustration for some parents:

Well, half of them don’t have a clue. They’ll look on her record and they’ll known what she’s got wrong with her but they all come in and say, ‘What’s this? What’s she got wrong with her?’ I don’t know how many times I have to explain to people what she’s got wrong with her, and I just think, ‘If you don’t know just look it up’ . . . It does get you mad sometimes.

Staff were sometimes seen to actively seek information about the child’s non-medical needs, but this often occurred during the admission, ‘learning on the job’ when something became apparent, rather than in the initial assessment, for example how the child communicates, what they understand and how they express pain. More often, there was a reactive request for information about a child, when the need arose, rather than a proactive request, in order to be able to plan. There was still a reliance on parents to offer information:

Nobody actually asked if we had any specific requirements for her . . . nobody said, ‘Do you need hoisting equipment? Do you need changing tables? Do you need to be able to her hoist her from a chair to a bed?’ . . . One or two of the nurses, just through chit-chat, told them that, ‘This is her “yes” hand, this is her “no” hand’. One of them asked her a couple of questions, but no-one really actually specifically asked us, ‘Does she understand? How much does she understand?’ We tend to have to volunteer the information.

However, it was apparent that staff did not always pay sufficient attention to adapting their practice for the child’s benefit:

We told them about his signs . . . they kind of just went, ‘That’s nice, that’s good’. Nobody asked to see what the signs were or if we could show them . . . I think they’re quite happy for you to get on and use it.

Identifying individual needs was also reflected in relation to children without LD who had additional learning needs. For example, the parent of a child who was receiving therapy input prior to discharge noted in the parent diary:

. . . returned and advised that I should register [child] as autistic!??? and advise the local authority education etc. I had to correct them to say that [child] is not autistic he is dyslexic! Told them that he already is registered as dyslexic and he had a Psychologist Educational Report. I feel that sometimes you are not listened to very well.

This parent also reflected on this experience in her interview:

‘Oh he’s dyslexic, we never knew that.’ That’s where it stopped. There wasn’t any sort of change of learning or nursing or anything with him . . . if they had known and had they had the resources and things, and [known] what to do, things would have definitely been better.

Although this parent had given specific examples of how to adjust the delivery of information and practical solutions, staff failed to act on these and, as a result, the child had experienced an admission three times longer than expected. This mother went on to explain the difference between staff acquiring and not acquiring the relevant information about her child beforehand:

So many hospitals you go to–, she can be in a wheelchair and they’ll speak to her ‘What’s your name? What’s your age? What’s your date of birth?’. You’re like . . . ‘Well, if you’d read the notes, you’d know she can’t speak’ . . . You get that so many times, but they didn’t do that. They went at her speed and her level. If she said something, they listened, and they said, ‘Right, OK, we can work with this, and we’ll do this and that’.

The amount of attention staff pay to identifying the non-medical needs of children with LD clearly has implications for the implementation of reasonable adjustments. Not having the necessary information until the child is admitted to hospital, which in some cases occurs many days later, clearly reduces the opportunities for adjustments to be made (parent quotation 3; see Appendix 9). As one parent suggested, putting things in place for children with LD is not necessarily difficult, but it does require some thought and planning:

All we’re thinking about is 10 children, 10 operations but they’re all individuals . . . could that not be done before you get there? If you know it’s a child with special needs, and you know they’re blind, then it doesn’t take a rocket scientist if you’re a play specialist, to say, ‘Right, I know what type of toys this child’s going to need’. So, in that room, in those cupboards, could be the play set.

Rarely did parents provide examples of staff seeming to pay complete attention to identifying their child’s non-medical needs by consistently and proactively consulting with them prior to admission and discussing the need for any reasonable adjustments. Even at preoperative assessment clinics, the opportunity for staff to identify the child’s individualised needs was often missed; a tendency remained for staff to focus on the reason for the child’s admission and relevant medical issues:

She took details of his condition and the syndrome, the autism . . . but that nurse that did the pre-op check it wasn’t like she asked me about whether there were any good things to be doing with him or things to avoid . . . I made a point of saying keep blood pressure machines away from him because they do totally freak him out but she didn’t probe or ask any questions around how best to deal with him.

One parent reflected on the positive interaction that their child had had with the consultant prior to her operation:

He did speak to her very, very kindly and on her level. He did understand she had special needs. I didn’t have to tell him. Whether he read notes or what, I don’t know, but he did speak to her on her level, and spoke to her in her terms . . . He was absolutely brilliant.

When asked, parents largely reported wanting staff to ask about their child’s specific learning needs, ‘out of decency’ (parent quotation 4; see Appendix 9), rather than not, and this was also the case for parents who had children without LD. However, as one parent explained, being asked in a letter to call the ward prior to admission if her child had LD was not particularly helpful ‘when you’ve already got a million phone calls to do’.

The importance of staff taking a proactive approach to understanding the non-medical needs of a child with LD, as well as the whole team being involved, is exemplified in the following quotation from a parent:

He [doctor] always asks personally if [child] understands and even when they book appointments and they call me . . . When I say, ‘He’s delayed’ they ask me, ‘How can we communicate with him? How can we understand?’ . . . I’m shocked every time how ready they are . . . they would do handover and then they would ask me more questions . . . I feel like that’s a dream . . . They’re not here to judge you. They’re here to support you . . . All staff knew what they needed to do, everyone.

Being proactive meant making information about the child’s LD easily accessible to all staff, for example by having ‘a dedicated page on the outside of the notes’, or ‘stickers up on the wall, just as they have “nil by mouth” stickers’. This may be a function of the hospital passport, but the majority of parents had never heard of it, although they felt that they would have valued being offered one. A couple of parents specifically described making ‘All About Me’ posters to put above their child’s bed, which shows staff the child as the person they are when not unwell. A hospital passport had been provided to a couple of families a few weeks into their children’s admission, by which time the parents could not see the benefit of completing it, with one describing it as a tick-box exercise. One parent whose child became critically ill just after she had been given the passport said that had been the last time she saw it, and another felt that the entire process was futile because ‘nobody asks to see them’. This mother went on to say how traumatic she found having to repeatedly answer doctors’ questions about her child’s birth, explaining that she had had post-traumatic stress disorder at the time and she felt as if she was reliving that each time she came to the hospital. This example highlights the importance of staff paying specific attention to what they need to know from parents for that particular admission, as well as being sensitive to the impact that sharing the information might have on them, something they will be able to do only if they have the right information beforehand.

There was a notable difference in cases when staff already knew the child from their multiple admissions to hospital. This experiential knowledge was felt to give staff valuable insight into what to expect and also what the child was like normally, providing a useful barometer of how unwell he or she was during the admission and what they were capable of:

They’ve got knowledge of [child] now, when we were last in we had a new nurse and they were brilliant I can’t fault them, but you’re having to, point out what other nurses already know. So, other nurses on the ward, why aren’t they allocated to us knowing that?’ It does give us a bit of confidence when you see familiar faces.

It was apparent that maintaining consistency of staff during the admission was essential for them to get used to the child’s ‘isms’, and this was something parents valued highly. When this was not in place, the impact was significant, and this was the case for all children in our study. However, this experiential knowledge was not always enough. One parent said that although staff knew about her child’s rare condition, it was still important for them to ask questions about her own child specifically, because ‘children with the condition are still different in what they can do’. It was also recognised that there was sometimes a limit to what staff might realistically be able to understand within the short time frame the child was in hospital, which meant that working in partnership with parents was vital:

Knowing how to communicate with him is important for people who don’t know him, but it is really difficult because I am always speaking for him . . . it takes months and months to get to know him. So, I don’t expect people, even if they are with him every day for a short period of time to understand, and I expect to have to speak for him.

The degree to which hospital staff paid attention to understanding the non-medical needs of children with LD appeared to depend on the individual staff member who was looking after the child on any given day. Parents reported variability in the approaches of staff working on the same ward at the same time and during different admissions, between staff working on different wards and in different hospitals, and between staff from different professional groups. Nurses were perceived to be on the ward and to have more time than doctors, but consultants modelled good practice, for example by talking directly to the child. The barriers to and facilitators of identifying children with LD in hospital, from the perspectives of parents, are illustrated in Figure 13.

FIGURE 13 Perceived barriers to and facilitators of identifying children with LD in hospital (parent interviews) (RQ1). (Figure not reproduced here; see the original article.)

Do children with and children without learning disability have equal access to high-quality hospital care that meets their particular needs (research question 1)?

The aim of this section is to describe parents’ perceptions about whether or not their child’s particular needs were met in hospital, including the barriers and facilitators in relation to the physical care needs and psychological, social and environmental aspects of their health and well-being. In each section, we present data from parents of children with LD first, except in situations in which there is greater benefit from reflecting on both groups of children in the same sentence. In Chapter 9, we explain the strategies that parents used to keep their child safe in the context of the care they received.

Starting with physical care needs, parents tended to focus most on staff confidence and competence in meeting these. Approximately one-third of parents of children with LD positively described their child’s care in general terms, for example ‘cannot fault the ward’, ‘care being excellent’, ‘needs being met’ and ‘surgery going well’. As one parent stated, ‘The staff were brilliant, they really were . . . his care, I thought, was excellent’. More specific examples, mentioned already, included the importance of staff having knowledge of the child and of the complexities surrounding the child’s condition, being an expert and being experienced:

I’d definitely recommend, as a hospital, I think they’re fab . . . you can tell when you’re speaking to consultants, that they really are good at what they do, so from that perspective we couldn’t fault, the expertise . . . we always felt we were in good hands.

Being prepared and adaptable were also mentioned, as was being responsive to the child’s needs, for example using accessible pain ‘tools’ to assess and manage pain, and having things ready in anticipation of seizures. A few parents also talked positively about their child being closely monitored, including the parent of a child with LD in a high-dependency unit who said that ‘every 10 minutes they [nurses] were coming in, writing things down’.

In addition to positive experiences, about half of parents reported concerns about the ability of staff to meet their child’s medical needs, pointing to a lack of knowledge, skills and training, confidence, planning and documentation, with generalised comments such as ‘child’s needs not at all met’, ‘they haven’t got a clue’ and ‘need wider understanding of the basics’.

Particular examples were described in relation to feeding, pain management, moving and handling, and managing seizures and dystonia, including some perceived care errors or near misses, medical incompetence, inequalities in care and diagnostic overshadowing. As one parent said:

We feel very negative about that particular admission . . . I do strongly believe that taking [child] into a hospital is worse for her than staying at home . . . You need efficient people, effective people and you need to know that the quality and professionalism of the provision is well measured . . . They haven’t got the understanding of the level of care that [child] requires . . . It’s almost laughable how pants it was.

Parents reported instances of medication being forgotten, being given via the wrong method or at the wrong dosage, being made up incorrectly or not being given according to the child’s usual regime or in a timely manner. One parent compared her experiences of medicine management at two different hospitals:

He had a load of seizures one day because they didn’t bring his medication on time. They said, ‘Oh, well, the shift change can bring them’. That’s not good enough, he needs them now . . . I think [name of current hospital] were a bit more understanding of the fact that when you’re in hospital, just because the drugs chart has 8 o’clock . . . that’s not in reality what happens at home.

Another mother talked at length about the challenges of managing her child’s dystonia in hospital, despite the fact that there was a ‘robust escalation plan in place’:

Really basic simple things but could be disastrous for [child]. It could set the scene for the entire day if you suddenly trigger a storm . . . they misinterpret that as a seizure . . . then they would probably give her Epistatus or it might be they give her chloral . . . they would likely knock her out for the entire day . . . that’s not a life for [child] just because somebody’s not understood her needs.

She perceived some of the nurses as anxious and worried about how to manage her child’s symptoms, but suggested that care would have been safer and easier for them if they had liaised with her and had taken time to get to know her child from the start rather than ‘trying to second-guess’. What often happened was that this mother was called on to make decisions about treatment, even during the night. Although she wanted to be involved in her child’s care, she reported feeling anxious when staff expressed uncertainty about the best course of treatment. This was reported by several parents, with one describing being left ‘battling between what’s right and what’s wrong’ when two of her child’s consultants disagreed about her epilepsy treatment. Concerns were not necessarily about complex issues but might require an understanding of the child’s individualised needs:

It’s just simple things like his feed. Someone could do it so it’s red-hot and barely tolerable to eat, but another nurse could do it where it’s straight from the fridge, freezing cold, and equally just intolerable. So, to get that, ‘I like my feed warm’, is, actually, these are child’s needs, not what his parents want.

One parent who was highly critical of the quality of food in hospital also highlighted that incorrect assumptions were made about her son’s inability to eat orally because he was also tube fed:

We have to fetch our own food in because they can’t cater for his diet. All that they feed children is chicken nuggets and pizza . . . so they get them in hospital then they ram them full of shit. That’s the politest way I could’ve put it. It’s Jeremy Kyle, sit them down in front of the telly. ‘Here’s your food, I’m watching the telly’ type of mentality.

Several care errors or near-misses in relation to tube feeds were also reported by parents of children with and children without LD.

Staffing levels were also perceived to be a key factor in the delivery of high-quality physical care, with examples provided of nurses ‘having enough time to care’, ‘responding to the buzzer’ and ‘not being rushed’, as well as of nurses being too busy to appropriately manage pain, monitor symptoms, provide necessary treatments or sit and watch the child. Having a higher staff ratio was felt by one parent to lead to more motivated staff and a better ward atmosphere. Several parents, however, described feeling ‘left’ to get on with things, with the child ‘going a long time without having needs met if parents not present’. A small number of participants had care packages that meant their carers continued to provide one-to-one care for the child during their hospital admission. However, one parent felt that this meant ward staff took less time with their child:

The nurse poked her head around and went, ‘Are you all right? Oh dear, she’s not having a very good night, is she?’ . . . She didn’t offer to help . . . There was one time where I think one of our carers had said, ‘Can you sit with her and support her while I draw up the meds?’ . . . She did it for maybe 5 minutes, she went, ‘Oh, she’s ever so strong. I can’t do this any more’, and went.

This parent went on to say that a lack of documentation by hospital staff was a major issue, highlighting that they were still responsible and accountable for her child’s care (parent quotation 5; see Appendix 9).

A small number of parents described situations, either previously or during the current admission, when they had felt that physical symptoms had been attributed to their child’s LD (i.e. diagnostic overshadowing):94

A lot of times, we’re just left or with things like her hypoglycaemia and they just thought, ‘It’s just down to her Down’s syndrome’. There was never any real investigation to find out or try to get to the bottom of it. So, I suppose if you compared that with a typical child, obviously, they wouldn’t, kind of, have that get-out clause, would they?

This parent reported having the same problem in relation to her child’s sleeping issues, constipation and hip problems, with the symptoms just being treated and not followed up because the child was never really seen as an individual. Another parent of a child with Down syndrome reported a similar experience in relation to her child’s sudden onset of pain and difficulty walking:

We went through to orthopaedics and I saw a junior doctor . . . and he blamed the Down syndrome, said, ‘There’s nothing wrong with the knee’ . . . he missed the opportunity to look at the hip . . . he said it was a low muscle tone . . . ‘she’s walked for 11 years, why all of a sudden is she not walking and it’s getting worse?’. He was very arrogant and he sent me away . . . all this time was marching on and she was getting progressively worse.

Not knowing a child was seen as a risk factor for diagnostic overshadowing.

Parents rarely expressed a wholly positive or wholly negative experience when talking about the physical care needs of their child with LD in hospital. Differences in knowledge, expertise and attitudes were described between individuals, for example some nurses ‘going the extra mile’ and others being ‘not good’, as well as between different professional groups, between staff working in different clinical areas such as surgical and medical wards, and between staff working in different hospitals (parent quotation 6, parent quotation 7; see Appendix 9). A paradox appeared to exist, however, between the high levels of medical skills and expertise staff had, often in relation to highly technical procedures, and their lack of knowledge and skills in meeting a child’s basic needs specific to having a LD. One parent described three levels of awareness, highlighting the difference between conscious and unconscious competence:

The difference is palpable to be honest with you. You can feel the difference between those that know and are comfortable with it, those that don’t know that are completely oblivious to it, or those that know but who are not comfortable with it at all. So that could be down to skill set and experience and training.

Although there were no examples in our data of parents of children without LD who needed to bring other carers into the hospital setting, or of diagnostic overshadowing, our data would suggest that many of the issues faced by children with LD in relation to their physical care needs being met are mirrored in the non-LD population. For example, the impact of staffing levels, particularly at night, resulted in periods of increased vigilance. Parents reflected in the main on experiences that ‘ticked all the boxes’ in terms of care needs, being able to ‘stay in the same routine’ in terms of administering medicines, and ‘faultless’ in relation to a high-dependency care unit. An example first from a parent diary (child with LD) and then from an interview quotation (child without LD) show these similarities between child populations:

I wanted to double check the drugs chart before we left to make sure ours says the same thing. There are NO notes on cares after 11 pm. None of her SATS [saturations] drops have been recorded, nor her seizures. Only the obs. on the iPod [Apple Inc., Cupertino, CA, USA] thing.

It really was you have to be 24/7 [24 hours a day, 7 days a week] to make sure everything she needs happens. You know down to taking over the management of her oxygen, all the issues to do with the bed, etc.

The majority of parents talked about the impact that being in hospital had on their child’s psychological well-being. Although again there were pockets of excellent practice, with staff adjusting their care accordingly, parents mostly described barriers to their child’s psychological needs being adequately met. Waiting was a particular challenge for a number of children with LD, who could become ‘restless’, ‘distressed’, ‘scared’ and ‘bored’ as a result. One mother described the impact of having to spend hours in the outpatient department with her son during an inpatient stay:

It was crazy . . . he was still getting over the sleep deprivation; it was just like torture for him to the point that he was hitting and kicking me and I was trying to keep him up. To do that to him, like a 3-hour appointment and it was sweltering down there and they had drinks down there but he couldn’t drink any of that because he only drinks specific things.

Another parent described the impact of her son waiting all day to go to theatre:

We didn’t get told he was last . . . it was half past five before he went down, after we’d been there all day . . . on Polycal which is like pure sugar being pumped into him . . . it made him hyper . . . when he came round from his anaesthetic there was five of them trying to hold him down, so I found it amusing, because I said, ‘Well, we’ve had that all day, and you’ve left us here all day, and left us until the last one . . . he didn’t go to sleep all night.’

In neither of these examples were any reasonable adjustments made to accommodate the child’s needs, and nor were parents informed of how long the wait was likely to be, the impact of which is captured in the two quotations.

More than one-third of parents talked about the psychological impact of their child with LD undergoing tests and procedures, which the child could find ‘overwhelming’, and the potential for staff to ameliorate or exacerbate this. The use of distraction for blood tests was praised, as was the support given to some children when they were going into theatre:

They were really on the ball with the fact that he’s going to need a bit more support. When they came to administer the pre-med . . . the play worker was chatting to him, one nurse was holding his hand then the other one was going to do the administering . . . accommodating of the fact that you couldn’t rush him.

This parent went on to describe the anaesthetic team’s responsiveness to her child’s needs by not using the mask to ‘put him to sleep’ and preventing him becoming hysterical, as had occurred during a previous admission. Similarly, another parent explained that having a ‘pre-med’ on this admission had been helpful, whereas ‘last time he went down fighting and came back fighting’. A number of parents talked specifically about theatre staff and their willingness and ability to adjust their practice to suit the needs of their child (parent quotation 8; see Appendix 9). In the example below, a nurse who knew the child well pretended to be taking her stiches out when in fact the surgeon behind her was doing it:

She let her take stitches–, heavens, for us, you don’t realise how massive that is. This surgeon was with sweat dripping to him . . . Yes, I know [child’s] face and I trust her, she’s been going every week to see her and whatnot so she’s become, like, a real friend. Yes. Then the surgeon took a step back and said, ‘I’ve got them all’, the nurse went ‘Yes, I’m done, [child].’ She was like, ‘OK’.

The challenge of children with LD undergoing procedures was highlighted clearly by a parent whose child had been admitted to a specialist children’s hospital for planned telemetry electroencephalogram (EEG):

He ripped his cannula out . . . it took four nurses and me and my wife to get the cannula back in. They [nurses] were worried about how he was feeling and how stressed he was . . . they went and got the extra nurses and held him down and he was hysterical . . . I think that was probably the hardest human thing to be honest. They got it in eventually and he calmed down after about an hour.

Another parent talked about the challenge of cannulating her child. She described staff instead getting blood by ‘stab[bing] his fingers or his toes and get[ting] blood that way which is quite cruel and it’s not just a little stab’. The laboratories repeatedly reported that the sample was inappropriate, which the consultant later (i.e. post discharge) agreed was probably a result of the method used. A lack of preparation and involvement of parents regarding tests and procedures was seen as a barrier to these being carried out in the best interests of the child. Another mother whose child was admitted to the same hospital for the same procedure predicted that it would be very challenging to put the EEG sensors onto her son’s head:

Another child might understand what’s going on but just not like it . . . but obviously chucking in autism and ADHD and a lack of understanding and communication, that’s just asking for trouble [laughter]. Yes, you’re asking for a disaster there.

Parents would often offer guidance about their child to enable staff to achieve their aims, but they were not always listened to or regarded as an active partner in their child’s care. For the child receiving the EEG, this was the main focus, and the parent was happy for regular observations (e.g. blood pressure and temperature) to be carried out later. It appeared that some children were ‘already at the point of no return’ before staff involved the parent. This had emotional and physical implications for the child:

Obviously, with an autistic child, once they’ve got distressed, then the calming down time is quite time-consuming. You know, he hurt himself. He had bruises all over his legs from chucking himself on the floor . . . he took ages to go to sleep and he was crying, which isn’t normal at all for him. So, I think the distress was obviously probably playing on his mind still.

This parent explained that she had asked for her child to be sedated beforehand and that staff needed to just ‘stop’ and consult with parents in advance about what would be involved and any adaptations that they thought were necessary.

Similarly, parents of children without LD also had both positive and negative experiences. Several parents recounted previously distressing experiences in relation to receiving a general anaesthetic or specific procedures, which had had a negative impact on their child’s ability to manage subsequent events in hospital. One parent described a loss of trust as a result of their child being misinformed about a procedure and being told ‘it’s not going to hurt’ when clearly having blood taken was going to hurt. They went on to talk about their own distress, and their child’s, when he was held during these procedures. This parent, and others, provided several examples of staff working hard to improve these experiences subsequently by paying specific attention to the child’s anxieties, and listening to the parent and/or the child, effectively mitigating these. These efforts of individualised care and attention to a child’s specific needs were praised very highly by parents: ‘Please can you take my cannula out before I wake up? . . . so, she was really good and had taken it out.’ When asked specifically about whether emotional needs were met, a number of parents of children without LD said ‘no, not by the staff’. This was often followed by a statement expressing surprise, and in these cases parents saw this very much as their role: ‘I took care of her emotions’. They were overall less concerned about emotional care, because they could deal with that, either in hospital or when at home, as long as the focus of the admission was not compromised. As with physical care needs, children without LD but with additional learning or behavioural needs had similar experiences to children with LD, highlighting again the significance of knowing a child and individualising their care:

I think, when she goes in that they are told what she’s in for, but don’t necessarily know her background, and take other things into consideration . . . we don’t ever have the same nurse . . . well you know if there’s a change could you please let us know a few hours before so we can prepare? Things like that.

Related to emotional well-being, an additional theme about dehumanisation emerged from the data that came only from interviews with parents of children with LD. For example, the unique diagnoses of some children with LD meant that they might receive greater attention from staff because they were a ‘novelty’ rather than for the child’s benefit:

It did feel like he was a bit of novelty, because the doctors seemed quite excited that he was there . . . that they could show people . . . they weren’t insensitive, but sometimes you did feel a bit he’s not a-, I don’t know a freak show sounds too harsh . . . but he’s not something to be gawked at . . . There’s a balance between showing that and wanting to teach . . . he is aware that people are oohing and ahhing, and ‘oh my gosh’ . . . so there’s a balance, he’s still a human.

This sentiment was echoed by another parent, who felt that staff at her local hospital who did not have the skill set to manage her child’s condition might ‘come and have a look’ and ‘have a nosy’ as if (s)he was ‘one of the seven wonders’. Isolated examples were also provided of staff ‘switching off’ while being told about a child’s needs and displaying an attitude of ‘he just doesn’t understand anything’. As well as staff lacking sensitivity, it was felt that some were simply rude:

We have had some experiences as well where we’ve had consultants be really rude . . . we had a consultant walk up to us and he was just so rude and looked at me and [child’s] dad and said, ‘Have you two been tested so this doesn’t happen again?’ [Down syndrome] and, kind of, referenced at [child] with his hand.

This parent had previously been asked by a consultant whether she had been given the option to abort her child and that, a lot of the time, ‘they [clinical staff] can be really rude and quite condescending about her child and her needs’. She also felt that there was ignorance from staff in hospitals generally in the terminology they use and said how ‘hurtful’ it could be grouping her child into just ‘those with Down syndrome’ and referring to her ‘as if she’s just this different race, like a their’.

One parent described a particularly negative interaction with a consultant, who had been asked by her son’s own consultant to come and review her son ‘as a favour’:

He’s ignorant . . . those posters that are up around bus stops where you’ve got a girl with Down’s syndrome and everything that’s saying, ‘I’m not just a disability’, someone needs to get one and stick it in his locker or his office . . . to say that people in [child’s] condition can’t communicate, so we [parents] jump to assumptions, that is disgusting, and that is also painting all disabilities as one line, and they’re not.

As a result of this exchange, the parent said, ‘I made a vow. No-one treats my child like he’s a cabbage. No-one makes it out my child’s a cabbage’. At times parents felt that staff’s attitudes or assumptions about disability had the potential to have an impact on their child’s access to particular aspects of care or treatment. Examples from previous and current admissions were provided of staff seeming to exclude the child from singing in the playroom with other children, overly focusing on what the child could not do and focusing on palliative care rather than treatment. One child was refused a general anaesthetic for an endoscope, despite the fact he would not tolerate the procedure without one, whereas another parent felt that the lack of value her child’s consultant placed on his life would prevent her wishes about palliative care being honoured. A challenge accessing appropriate pain relief was also described:

Because [child] can’t communicate what he’s feeling or what his needs are it’s taken for granted. So, pain management’s always been an issue because he can’t tell us that he’s in pain . . . let’s be on top of that pain, not react to it. So, we had a mutual disagreement with the pain nurse last time. ‘Oh, often paracetamol is normally fine’. Well, [child’s] not normal and we’re not willing to take the gamble because he’s just been through so much.

One parent described at length the barriers she had faced before obtaining surgery for her child, who had experienced 3 years of extreme pain, after a fourth opinion:

He made the assumption, he said, ‘I’m not going to do the operation’ . . . it was because of the Down syndrome . . . ‘Does that mean a life in a wheelchair full of pain?’ and he said yes. He said, ‘These children,’ by which he meant children with Down syndrome, ‘I can do the operation and they will choose not to get up out of the wheelchair.’ I said to him, ‘You haven’t taken into account [child’s] tenacity or my tenacity in making her do the exercise’ . . . He made an assumption, based on cases he’d done in the past, without really knowing [child] at all or asking me about how we would rehabilitate, it was all his attitude and he didn’t engage with [child] at all.

Not all examples parents shared were in relation to the child’s current admission. However, it was apparent that these incidents could ‘stay’ with them forever, and this is important when thinking about equality of care. The mother quoted above, for example, described having learnt to ‘play the game’ needed to get the treatment her child needed, suggesting that there was ‘no equality whatsoever’ because children without LD were not faced with the same issues. It took a fourth opinion before a consultant agreed to operate on her child, and she said that her experience ‘colours every other appointment that I go to’.

The importance of positive social and environmental aspects of care was also highlighted. The loss of routine and lack of familiarity while in hospital were further issues faced by children with LD, which could have an impact on their sleep, cause confusion and irritability, and raise anxiety. As many parents explained, their children relied on certain things (e.g. smells, objects or activities) happening at certain times to provide them with a sense of security or guide them about what would be happening next, for example in relation to a bedtime routine:

You cannot use it [disabled bathroom] at all . . . It does, it punctuates his day as well. It’s his cue to go to sleep. It relaxes his muscles . . . just little things like that, and being able to do his massage after his bath. The whole thing is a really important part of his routine . . . he hasn’t got the familiar smells and things when he’s in hospital, and he relies on those.

One mother explained how keeping to a routine, such as school, made a ‘massive difference’ to her son, whose teacher visited him in hospital:

His face lit up as soon as he recognised the voices of the staff that he knows. They did hand massage and stuff with him. The day seems to go quicker because it’s really hard trying to entertain a child who’s irritable in a room where you haven’t got your own things and he hasn’t got his own things.

Even trying to establish a routine while being in hospital could be a challenge and, at times, staff ‘just didn’t really take it on board’. Other examples of factors that made this difficult included being moved five times during an 8-week inpatient stay and a lack of resources, such as symbols and social stories, being available.

Most parents spoke very highly about play staff, with the main criticism from both groups of parents being that there was a shortage of provision. Nearly half of parents of children with LD said that during their child’s admission they had been seen at least once by a member of the play team and/or a hospital teacher, who often tried to source appropriate toys and sensory equipment. Some positive examples were given of these individuals making adaptations specifically to meet a child’s individual needs:

The play team were fabulous. They’d come up and they’d say to [child], ‘What do you like playing with? What do you like doing?’ . . . They’d go off and they’d bring her level . . . all these big trays of stuff and nothing was too much trouble. So, yes, they kind of catered individually, for everybody, but never left you alone.

The amount of contact children had with the play team varied considerably, from seeing someone once on admission to seeing them every day. One parent said that the play specialist ‘couldn’t do more for her child’, while another described how they tried 100% to meet her child’s needs, even if they were not always able to. The importance of play specialists paying attention to the child’s chronological age as well as developmental age was highlighted:

Another thing I struggle with [child] is, he’s 15, he’s got 15-year-old hormones raging through his body, he thinks like a 15-year-old, but because of his condition, people talk to him like he’s a baby a lot of the time . . . but the play team spoke to us before they approached him because they didn’t want to offer him baby toys if he wanted something more grown up. I was very impressed with them . . . one sent us off for a cup of tea and sat and read to him, because he loves listening to people read.

The involvement of the hospital school was also highly valued:

The SEN [special educational needs] teacher was just amazing and just having their involvement from very early on actually . . . he adored their sessions . . . they liaised with his normal school and they even learnt one of his favourite songs . . . and the teacher actually sent a video of her doing the song for them, which they showed [child] as well. So it just, kind of, shows the level of liaison really.

However, some parents reported less than positive experiences, rarely, if ever, seeing anyone from the play team during their child’s admission:

I didn’t even know who they were until near the end. I think maybe there might be assumptions, no, maybe not. I don’t know whether they thought there’s not much they could do with him, I don’t know, but for whatever reason, he didn’t have access to that, and I didn’t really know about that.

The feeling that play staff were either not willing or not capable to support their child was also expressed:

I think they spend more time with children who can communicate . . . I don’t think they know what they’re doing with disabled children. I don’t think they have that skill. They are play specialists, so they’re great at thinking about distraction, and managing operations . . . but not one of those play team seem to have a disability hat on.

The perception of some parents was that children with LD did not seem to matter as much to staff or get as much attention, either because they could not speak or because other children were noisier or interacted more, which left children with LD feeling left out and hence bored. The issue of availability of play resources was raised by some parents, who described the need for a greater range of specialist and age-related toys and sensory equipment, whereas others said they had no idea what or who was available, or that toys were locked away outside regular hours and play specialists did not work at the weekends. One mother responded by buying sensory equipment for the ward to keep, although this was said to have been out of action for 8 months. This child’s parents went on to say that offering a slightly personalised play service would enable her child to be distracted, helping to aid her child’s recovery and allow her to go home more quickly, ultimately saving money.

Parents of children without LD also highlighted school and play as some of the positive aspects of care in hospital. They saw significant benefits for their child from these interventions when they occurred. However, similar to accounts from parents of children with LD, access was variable. Admissions over a weekend often meant that play staff were not available, and what was available on the ward was often not ‘age-appropriate’. For many of the parents, both of children with LD and of children without, the lack of activities for older children was consistently highlighted. Access to a television and/or Wi-Fi for iPad or tablet use was clearly important. Although a few parents talked positively about what was available, many raised issues about availability, working order and/or financial cost to parents. It was also noted that links between hospitals and local schools were not always made.

An account from a parent diary (child with LD) and a quotation from a parent interview (child without LD) highlight again that, in both groups, inequalities exists:

Disappointed that the play team did not visit earlier in his stay as we never knew about the play cupboard with jigsaw’s/games. He was introduced to the Teen room to play on Xbox [Microsoft Corporation] on the last 2 days. If told earlier then maybe mood/behaviour would have changed.

The play therapist tried very hard . . . but they just have criteria to fill . . . you were there for one reason and one reason only and they couldn’t consider anything else because they were under pressure . . . they tried. . .

A summary of the barriers to and facilitators of the particular needs of children with LD being met are shown in Figure 14.

FIGURE 14 Perceived barriers to and facilitators of meeting the needs of children with LD in hospital (parent interviews) (RQ1). (Figure not reproduced here; see the original article.)

The physical and sensory environment had a significant impact on the delivery of care for children with LD, as well as the equipment and resources available to staff (Figure 15). Many parents described challenges with the space within hospitals for utilising and storing the myriad of equipment their child often required, in particular wheelchairs and hoists. Some described the space as too small or inaccessible. Examples were provided of children being unable to access a special needs bathroom because it was being used as a storage cupboard, of wheelchairs being stored in a ‘filthy’ toilet and of children in wheelchairs being unable to access the sensory room or the facilities in the playroom:

The table wasn’t the right height for the wheelchair to get underneath, and there were no, kind of, lap trays to put anything on. We had to improvise for weeks.

FIGURE 15 Perceived barriers to and facilitators of children with LD being cared for in the right environment, with the right equipment and resources (parent interviews) (RQ1). (Figure not reproduced here; see the original article.)

Numerous parents felt that consideration should be given to the bed space allocated to children with LD, with one mother describing the challenges of manoeuvring her daughter’s hoist and wheelchair in an open ward without causing disruption to other patients. In some cases lack of space clearly presented a safety concern, with one parent tripping over a mobile hoist on more than one occasion and another describing therapists ‘having to weave in and out’ [of the equipment], which was ‘almost a laugh but not really funny and not safe’. One parent highlighted how poorly designed hospital waiting areas could be for patients with wheelchairs because the corridor seating was fixed. She explained that every time another patient came down the hospital corridor she had to push her son in his wheelchair to the end of the corridor and back to let them through. Another parent, whose son’s wheelchair had to be stored in the disabled bathroom, described the anxiety he experienced from not being able to actually see it.

Similar to staff, many parents reported a lack of available equipment for lifting or mobilising their child, mostly in relation to ceiling track or mobile hoists. As a result, one mother who had an existing injury felt that she had no option but to manually lift her child. In a number of cases, a lack of hoists was felt to compromise the child’s dignity and/or privacy, for example because they had to have lots of bed baths instead of a shower. Many parents mentioned challenges associated with bathing or showering their child with LD: one parent described how they had to use a bathroom on a different ward because the bath on their ward was inaccessible. The importance of maintaining privacy and dignity was also raised in relation to the provision of personal care to children with LD, especially teenagers, with some parents feeling strongly that they should be offered a cubicle as a result:

Nobody else can walk in, watching them get changed . . . other kids can go to the toilet . . . and can walk round to their showers. Whereas I couldn’t shower her and just wrap a towel around her in the bath seat and then run her round to her room . . . they should have put a hoist in their own room . . . if my brother’s here and he’s sat in there changing her, she doesn’t like it, she’ll whinge.

Related issues that parents raised included their child with LD not being able to be hoisted up to look out of the window and other parents in an open bay complaining about the noise their child made or continuing to look in at them. One parent talked positively about being given a cubicle so that she did not have to deal with her son/daughter’s behaviours of concern in front of other people. In the main, cubicles were valued when they were offered, including to facilitate a child’s disabled school friends visiting. Despite cubicles being favoured, a number of parents did highlight the downside that this usually meant that their child was not visible to nursing staff, which made it even harder for the parent to leave the child for even a short time, an issue also raised by some nursing staff.

As well as having an impact on dignity, a lack of equipment had the potential to compromise the parent’s physical well-being and the child’s safety:

I said, ‘Oh, can we have the hoist? [Child’s] not very happy. I think she’s soiled her pad.’ They said, ‘Oh, it’s in use at the minute.’ I said, ‘Roughly how long is it likely to be?’ She said, ‘Oh, I don’t know, 20, 30 minutes’ . . . [Child] was absolutely apoplectic . . . In the end, with my injury I just had to lift her and move her onto the bed. I mean that’s not safe at all.

Nearly one-quarter of parents reported safety issues associated with hospital beds, primarily the risk of their child becoming trapped in the sidebars, as well as hurting themselves (see Chapter 9). Strategies were sometimes used to minimise risk, but these tended to be ‘makeshift’ and improvised based on what was available, rather than planned to use purposefully designed resources (parent quotation 9; see Appendix 9).

Another parent noted in her diary: ‘They always don’t have enough padding . . . on Wednesday there was only padding on one side. I have to cover the sides with blankets.’ One mother went as far as to sleep in the hospital bed with her child to prevent him from becoming stuck. Reference was also made to the makeshift use of pillows for positioning, as well as to the lack of suitable chairs for children with LD, which resulted in them spending excess time in bed. A small number of parents spoke positively about the provision of specialist air beds/mattresses. However, these could deflate and proved challenging when changing incontinence pads. In terms of tailor-made beds, one parent highlighted the lack of access these allowed for feeding tubes and intravenous lines, rendering them impractical and unsafe for her child after an operation.

Feeding equipment was discussed by several parents, and examples were given of them taking in their own feeding pumps, drinking cups and spoons, or improvising with what was available. Feeding sets were also reported to be incompatible with the available backpacks, and mobile feeding packs were provided only just prior to the child’s discharge. A small number of parents also described making up their child’s feeds at home and bringing them into hospital, which could be difficult for them to manage, including severely compromising their sleep. A reliance on parents to bring supplies into hospital for their child with LD was particularly evident in relation to nappies/incontinence pads. One parent described the challenges her husband faced when bringing in multiple supplies on public transport:

Taking a sibling on the train that’s ASD [autistic spectrum disorder], noise sensitive . . . clean clothes for [child] and me, [child] was going through 10 nappies a day when he was in, plus bringing a week’s supply of milk at three cartons a day.

One of the biggest issues with the hospital ward environment was noise and light, which were particular issues for children with epilepsy, whose seizures could be triggered by such factors:

There was one HCA [health-care assistant] who came to do his obs [observations] in the night. I know she didn’t turn the lights on, but what she did do is shine her torch right in his eyes, you know, but she hadn’t turned the lights on, so that was all right? It’s all light, not the light. So, it’s those misinterpretations.

The lack of attention seemingly paid to the sensory environment was highlighted by many parents, who talked about the noise of bins closing, taps running, doors banging, staff talking and babies crying.

Some parents of children without LD also identified situations in which the hospital environment was unconducive to their children’s emotional well-being. Teenagers, for example, could find it difficult being in a bay with babies, which kept them awake at night. One child found it particularly distressing being nil by mouth on a ward when they were surrounded by children with different issues around food such as anorexia and diabetes; they constantly had to hear discussions about food plans and smell food as it was brought to the ward. Similar to parents of children with LD, cubicles were largely valued, and some children were reported to be ‘over the moon’ at being moved to one. However, as another parent pointed out, the use of cubicles could also lead to children feeling isolated. In some cases, parents could manage situations of psychological distress by advocating for earlier discharge home: ‘In the end [child] said, “I’ve got to go home. You have to get me out of here today because I can’t stay another night”’.

For children without LD whose mobility was impacted, toileting provision and help with moving were also highlighted as poor, and ambulant children experienced equipment and resource shortages that had a negative impact on their hospital stay. This is highlighted particularly well by the example of a child with ADHD and a bowel condition whose dignity and privacy were compromised by not having access to her own toilet. She was further debilitated by a broken drip stand. The noise, lighting and clinical interventions on a ward could also be problematic, particularly at night, with one parent citing the difficulties of being constantly aware of and alert to how much noise they were making and thinking of others on the ward. However, for those with LD whose emotional and physical health was particularly fragile, these issues had a greater impact, as related in the following quotation from a parent diary:

He also due to his disabilities has sound sensitives and struggles/gets stressed with unpredictable noises. So, gets stressed unhappy with infusion pump alarms, monitor alarms, and other children crying . . . much more awareness is needed by staff as to the difficulties that children with special needs and autism have with changes of environments.

Are children with and children without learning disability and their families equally involved as active partners in their treatment, care and services (research question 3)?

There is widespread commitment to family-centred care as the most appropriate model for the care of hospitalised children.95,96 However, health-care professionals take family-centred care to mean different things or are unclear about what it implies and requires,97,98 which means that putting it into practice can be variable. At its core, however, is ‘involvement’, and we sought to look at this in relation to all children and parents.

Involvement of children with learning disability

Discussion about engaging directly with children, and involving them, revealed a number of barriers. Lack of time was seen as a particular barrier to staff fully engaging with children with LD, as was a lack of awareness of some of the issues related to communication, as in the following quotation:

In front of [child], nurse told children didn’t have to go to school on discharge – therefore [child] didn’t want to go to school!

The need for greater attention to be paid to the communication needs of children with LD was often mentioned:

If they wanted to accommodate special needs children, they could easily have picture symbols. [Child] can’t read, so, obviously I was telling him all his choices and then he was picking. For a special needs child, that is an area I guess that they’re not accommodating.

However, some parents of children with profound and multiple LD reported that the nature of their child’s LD was such that the involvement of their child in any aspect of their care and treatment was always going to be limited.

One mother went as far as to suggest that because her child ‘has special needs and cannot speak’ sometimes ‘decisions were forced on her’. Other parents explicitly felt that staff treated their child differently from children without LD, in the sense that ‘staff just look and see disabled and think he wouldn’t know, when he does’.

Parents had various perceptions of the way that staff interacted with their child and the extent to which staff involved their child. Some positively described staff talking directly to their child, informing them who they were and explaining beforehand the things they were going to do. They talked about the tone some staff adopted, for example sounding gentle or calming, using laughter and ‘banter’, or speaking like a friend, which one mother said helped to make her child feel at home. Staff being kind and friendly was also described. Some parents also commented positively on nurses being patient with their child, taking the time to answer their questions. The benefit of the same staff being allocated to care for their child during the same admission or across admissions was highlighted once again; one parent explained how interactions and explanations improved as staff became more familiar with her child and another indicated that staff who knew her child were more relaxed with him. Another parent described at length the different experiences she had with individual staff on different admissions, from some ignoring her son to others being fully engaged:

She spoke to him, not just me. She spoke with him. When she was checking his obs and everything she was explaining to him . . . she was saying, ‘You’re a smiler, you are’ . . . it was like she’s getting the job done but at the same point she treated him like he was a typical little boy. We both made comments, how he smiles with his eyes and everything.

Despite positive examples of staff being kind and friendly in their interactions with children with LD, when involvement occurred it tended to be limited to giving simple explanations and answering questions, rather than involving children actively in making any decisions (where they had the capacity for this). One clear example was a child of 12 years who had been involved in whether or not to have surgery on the basis that she was ‘of sound mind’, but her parent did not feel that this had been handled well. The parent explained that the anaesthetist had revisited this decision on the morning of the surgery, which was particularly unhelpful because as soon as her daughter had been given the choice of going home she was never going to want to stay, irrespective of what she had agreed to beforehand. Approximately equal numbers of parents reflected negatively on the way that some staff interacted with their child, with many describing their child being ignored or talked over, even in situations when they ‘like being spoken to’ or ‘could answer’ for themselves. One parent subsequently described their child being petrified, and another said that talking inappropriately in front of her daughter with severe cerebral palsy makes her daughter ‘feel like she is taken on a rollercoaster ride’. She went on to explain further:

The doctors certainly talk to the grown-ups and don’t really address the children, and I think because of child’s physicality, a lot of people don’t know how much she understands. We have had other appointments with doctors who’ve said some quite inappropriate things about, you know, potential operations, things that will need to be further down the line, that she really didn’t need to go into graphic detail.

This parent shared what her daughter had requested in her annual review:

One of the things that she’d like grown-ups, in general, to do more of is tell her what they’re going to do before they do it. I think there is that assumption with her that they come in and go, ‘Right, we’ll just put you on the pump,’ or, ‘We’ll just do this with your dressing,’ and no-one actually says, ‘All right [child], what we’re going to have to do is-,’ and explain it as they’re going along . . . explain how it might make her feel, explain, you know, how long it might take before they do it.

There were further examples in the context of care provision of staff ‘doing things’ to children with LD, including taking blood and removing a nasogastric tube, without any discussion or preparation and without recognising the child as an agent:

To start with, when they were taking his temperature and his blood pressure and that, they weren’t saying, ‘Hi, I’m going to put this to your ear, but this will be taking your temperature. It’s going to do a bit of a beep,’ . . . It was literally just being done to start with, which is pretty ignorant . . . It’s not how we’d be treated so I don’t think he should have been.

It’s about treating her as a person . . . she’s got a right to that and we expect it for her. You’re not suddenly pulling her, because she’s heard a conversation between me and you . . . that’s going to come as a shock . . . I think they do need to start realising that they are still individuals, no matter what the disability, and start learning the skill set that goes with that, then I think you will get better results.

The variability with which different nurses interacted with their child was highlighted:

It depends on personality of the nurses. Some of them will say, ‘Hello, how are you?’ ‘Fine.’ ‘I’m going to attach you to the machine.’ Very professional. It just stays that. Basically, some nurses see me there, so they’ll see me, and they won’t take him as an individual. They’re doing their job, just telling him, ‘I’m attaching you to the line,’ and ‘It’s finished.’ Talking to mum, what’s happening. You understand? There are other nurses who love him, and they will speak to him as an individual. That’s what I want for him. He is an individual. So, they will talk to him. ‘How are you? What are you doing? What are you drawing?’ That’s very few.

Parents of children without LD highlighted staff who listened and understood their child, rather than imposed a plan. Seeking out the child’s view, listening to the child as part of providing personalised care was highly valued, when it occurred. Parents used their own presence in hospital (sometimes extending the period of time they stayed) to mitigate a lack of effective individualised communication with their child. For children without LD but who had additional learning needs, their involvement in their care was equally compromised when adjustments were not made, and their suggestions were not listened to:

Considering his learning style, I said if you could get a teddy or a doll, and put some cages on it, and show how its going to work, demonstrate with and he could copy his teddy . . . it didn’t happen, I don’t know if they didn’t have the time, or it was something they couldn’t physically do or won’t do, I’m not sure. It didn’t go anywhere.

The involvement of parents of children with learning disability

Three times as many parents described their experience of working in partnership with staff as being entirely negative as those who described their experience as being entirely positive. Most parents described a mix of feelings about their involvement. Facilitators of feeling involved as a partner in their child’s care were being listened to and respected, being kept informed, and being included and involved in decisions about their child’s care, as well as being able to negotiate their role. In terms of their involvement, parents described various aspects of what they did for their child, including practical care. Sometimes this was welcomed by parents, who wanted control over the quality and timing of care, who wanted something to do or who felt that it was simply part of their parenting role:

We administered his medication and did his personal care, as I say, mainly for something to do, because we do it every day anyway. It is very time-consuming. I would have felt slightly embarrassed sitting reading a magazine in [child’s] room while a nurse sat there for an hour slowly giving him his medication, although they were always there to do it if we needed them to. They were happy for us to do whatever level of care for him we wanted to, but they were also happy to take over at any point.

Parents advocating on behalf of their child, and being their voice, especially for those children unable to communicate for themselves, was frequently described. For some parents, however, a sense of responsibility and being relied on by staff reinforced feelings that they were expected to provide care or stay by their child’s bedside, for example implicitly by not realising that leaving ‘was even an option’ or explicitly through signs on the ward informing them they were ‘not allowed to leave’. Another said that she had been given the impression that the nurses would have done more for her child and prioritised his care had she not been present, and another talked about feeling pressure not to be gone for long if she did leave. Sometimes, knowing the family well could lead staff to assume that a parent would adopt certain responsibilities during every admission:

The one I get is, ‘You know what you’re doing because you do it all anyway, don’t you?’ They don’t ask any more. They assume. Most of the time, as I’ve said, I would rather do it myself. When he’s really poorly and really tired, sometimes I do need them to say, ‘I’ll do those meds if you want’ . . . it would be nice, just given the context of where we’re at, for them to observe us both . . . ‘I’ll do that,’ rather than me having to, again, ask and say, ‘I’m really tired. I’m really stressed. I’m worried. I’m upset. Can you do that?’

Again, it was apparent that a single negative incident could have a long-lasting impact on parents’ future decisions about the care of their child:

Our consultant said that we could have a play specialist to sit with him/her . . . the sister in charge made out that we’d asked for a play specialist to be with them 24/7 . . . It was a shame because some of the staff there were fantastic. It was just that one experience that just put us off completely.

In terms of being listened to, one parent reflected positively on how staff had changed their attitude towards her over time, saying ‘In the early days, we had a lot of upsetting experiences . . . with nurses or doctors thinking that they knew it all’. She described her child’s new consultant as fantastic: ‘she’s even written in his education and health-care plan that the parents are to be, kind of, consulted at every stage with child’s care’. The relationship that this parent had with staff from her local non-children’s hospital, compared with the relationship that she had had with those at the specialist children’s hospital further away, was described:

Every ward we’ve been on at [children’s hospital] has been lacking in that . . . that emotional side of being a nurse, showing care and compassion . . . at [local hospital] they put a lot of emphasis on that kind of relationship building with the parents as well.

By contrast, however, another parent spoke highly of staff from a specialist children’s hospital, including her child’s consultant paediatric neurologist, who had said to her, ‘A mother always right. You know the child . . . You’re not paranoid and don’t consider yourself paranoid . . . That gave me a lot of confidence’. The nursing staff were also praised for the way they negotiated aspects of care, for example in relation who would administer her child’s medication:

I wouldn’t like it different. It was just perfect. Neither too much, neither too little.

Honestly, they let you choose . . . and not make you feel guilty.

The following quotation from the mother of a child with profound and multiple LD who had been admitted to a non-children’s hospital highlights particularly well parents’ views on what it means to be a partner in their child’s care:

I feel that we have the respect of the doctors and consultants . . . they listen to us . . . they put trust in our knowledge of [child] . . . They don’t hesitate to ask our opinion . . . and have acted on requests that we’ve made. I definitely feel that we’re right alongside them. I’m also impressed how much the doctors listen to the nurses who have been caring for him. There’s no hierarchy. They are very open to discussion, and never rush us.

However, nearly every parent of children with LD described numerous barriers to feeling involved as partners in their child’s care, many of which exactly mirrored the facilitators described above, such as feeling uninformed, not listened to or respected and not involved in decisions. Not being in control, valued or believed were other descriptions provided. Furthermore, doctors were seen by some parents to be either inaccessible or disengaged, giving the sense that they ‘can’t be bothered’, and nurses were often described as rushed and busy:

Care was like what we have to do at home. The only thing that they did was the obs and the meds. Apart from that, the rest of it is just done by the parents . . . I was quite happy with it because she was a little bit more comfortable with me doing it, rather than someone else . . . most of the time there’s no one to ask . . . you just get on and do it.

Parents described uncertainty, frustration, anxiety, anger, helplessness and invisibility, as well as a lack of trust from staff, with one parent describing feeling like a convict:

Paediatric doctor in the hospital, the way she was speaking to me as if I’m the convicted prisoner, and she’s the jailer officer. I have no say. She really behaved very rudely with me, very badly, as if she’s not my child, I’ve got no right on her.

Additional barriers were a lack of consistency, communication, co-ordination and collaboration between individuals and teams:

It was very confusing because everybody had different ideas about what intervention was needed. The communication between them wasn’t clear . . . we were stuck in the middle, [child] was the one struggling on the bed . . . Myself and my husband were begging them to intubate . . . They just said, ‘I hear what you’re saying, but I’m not going to change my mind.’ . . . He was seizing, he was in a dystonic storm, he was in an awful amount of pain. Just it was the most distressing thing I’ve ever seen.

This mother went on to say that a few hours later the crash team had to be called as her son’s lung had collapsed and he required immediate intubation. Her feeling that the unique knowledge she had about her son was often ignored by staff is highlighted in the following quotation:

That’s it, an expert in my own child . . . I am child’s interpreter. I’m telling them all the time, but they’re not listening . . . you go away thinking about it and playing on it in your mind . . . feeling useless and just feeling exhausted by it all, because I knew what he needed, but it wasn’t being taken on board.

She explained that there were numerous situations that could have been avoided had her opinion been valued, and she later questioned whether or not doctors felt threatened by her. Parents’ perception of the distinction between the individual-level knowledge (idiographic) that parents hold about their children with LD and the group-level knowledge (nomothetic) staff hold about children with LD in general is epitomised in the following quotation:

We know that you guys are the ones that have gone through these years of training, you’ve got years of experience dealing with medical fields, but this is our child and we’ve known her every single day of her life since. We know that something is not right . . . because we’ve seen these similar symptoms before. You’ve seen her for 5 minutes. We would like you to take our advice on board a bit.

Another barrier to parental involvement was not being properly informed, which could be due to the timing or to the way that information is shared (or not shared) with parents:

You’ve just got this big group of consultants coming around and there isn’t anybody that really explains or stops and says, ‘Look, this is what we did’ . . . we’re trying to grasp for that bit more time, you know, they’re walking off and we’re still heckling them for questions and answers.

The extent to which this parent lacked information about her child’s hip surgery is highlighted in the following quotation:

When we took her down for an X-ray, she’s just got this really big piece of metal in her femur and her hip and we didn’t know they were going to be putting the metalwork in.

This parent went on to describe the different sense of involvement she had felt in relation to staff at another hospital and questioned whether the complexity of her child’s surgery accounted for the difference in attitude:

They just could not have been any better. Everything about that service up there, we did feel valued as parents and we did feel as if our opinion mattered, but I suppose, because she’d had such complex surgery maybe they did approach parents differently. I suppose, when we’re looking at [child] having hip dislocations, it’s very different to open-heart surgery, isn’t it?

Parents of children without LD described how they had become highly skilled over time as their knowledge grew and they applied that to how they knew their child usually responded. Parents expected to take the responsibility for meeting their child’s physical care needs in hospital, including those that arose as a result of their child’s clinical condition (e.g. enteral feeding). However, some parents were surprised by this, but when they realised what was required, they took on the role of a carer in hospital. During longer admissions, parents articulated the impact that this role had on their own well-being. Some had not known that this would be expected of them. This expectation of this parental role was not always described in such a positive way, as with this parent of a child without LD in her diary said:

Biggest thing??????? Is the need for parents effectively to act as a surrogate nurse to ensure she gets what she needs. This is OK and understood, but would have been better to have had explained earlier to allow prep.

Parents had a range of views in relation to the staff listening to their concerns and consulting them – in the cases they felt listened to and a responsibility to voice their child’s wishes alongside their own views. There were examples of parents feeling that they were working as a team with some health-care professionals. The barriers to and facilitators of children with LD and their parents feeling involved as partners in their care are shown in Figure 16.

FIGURE 16 Perceived barriers to and facilitators of involving children with LD and their parents as partners in their care (parent interviews) (RQ3). (Figure not reproduced here; see the original article.)