Feedback from children and parents about their hospital stay

In this chapter we present the results of the anonymous child and parent survey (phase 3) from the seven participating hospitals, combined with qualitative data regarding children’s views of their hospital experience (phase 2, but who did not complete the survey).

We received 1371 completed parent questionnaires and 1180 completed child questionnaires. Just over one-third (n = 543) of children completed the child questionnaires themselves, with an additional 12 in conjunction with a parent, and 587 were completed by parents on behalf of their child. In 38 cases, information about who completed the child questionnaire was missing.

Owing to the nature of how these data were collected, this sample includes questionnaires related to children without LD and without a long-term condition. For completeness and ethics reasons, we provide demographic data about this full data set of children and their parents (see Appendix 10, Table 16, and Appendix 11, Table 17). Given that this report is focused on children and young people with and without LD who do have a long-term condition, we do not report on this data set in this chapter.

Comparisons of the quantitative data below focus on those children with a long-term condition and LD (n = 198) with those with a long-term condition only (n = 355). Demographic data about these participants are shown in Appendix 12, Tables 17 and 18. Children without a long-term condition and their parents are not included in this comparison.

Although the questionnaires were designed primarily to answer RQ4, related to satisfaction with the hospital experience, additional questions were included that contributed to answering the other four RQs. Findings from the parents’ and children’s questionnaire are provided first, followed by qualitative data collected from children using a combination of a sticker exercise, a Talking Mats interview and a ward tour with photography.

Parent questionnaire

Research question 1: do children with and children without learning disability have equal access to high-quality hospital care that meets their particular needs?

The findings showed evidence of inequality (Table 12). Parents were asked eight questions about their satisfaction with care to meet their child’s needs in relation to aspects of staff competence, confidence and capacity. Levels of satisfaction were generally lower among parents of children with LD, particularly in relation to access to resources and confidence in communicating with their child. Only 50% of parents of children with LD were completely satisfied that staff were routinely able to access LD specialist staff to meet their child’s needs. Parents of children with LD also reported lower levels of satisfaction in relation to staff working in an environment that was designed to take into account their child’s individual needs; two-thirds of parents of children with LD were completely satisfied compared with more than three-quarters of parents of children without LD.

Research question 2: do children with and children without learning disability, assisted by their families, have equal access to hospital appointments, investigations and treatments?

The findings do not show evidence of inequality. We asked parents of children with and parents of children without LD about the co-ordination of their child’s care and found that > 80% in both groups strongly agreed that their child’s care was well co-ordinated.

Research question 3: are children with and children without learning disability and their families equally involved as active partners in their treatment, care and services?

The findings do not show evidence of inequality. Approximately three-quarters of parents in both groups strongly agreed that they were actively involved in decisions about the care and treatment of their child and had a choice in the care provided for their child. Similar proportions also agreed that staff valued their experience as a parent and took them and their concerns seriously.

Research question 4: are children with and children without learning disability and their families equally satisfied with their hospital experience?

The findings showed no evidence of inequality. There was no difference between parents of children with and parents of children without LD regarding the helpfulness of any of the staff groups. Overall ratings were generally positive, with most staff rated as extremely helpful. However, 10 out of 77 parents (13%) of children with LD reported that they had not seen a LD nurse but would have liked to and eight (10%) did not know whether or not they had seen a LD nurse. The fact that some families wanted to see an LD nurse and did not have the opportunity to is a potential source of inequity. Parents of children with and parents of children without LD demonstrated equal levels of agreement about how staff interacted with them in terms of being responsive to their own and their child’s needs, helping them and their child, spending enough time with them and their child and asking them and their child questions about how they were feeling. Parents were also equally satisfied with how staff communicated with them in terms of the purpose of the admission, keeping up to date with what was happening, explaining tests and procedures and answering their questions. Overall levels of satisfaction were high, with > 98% of parents in both groups completely or mostly satisfied with their hospital experience.

Research question 5: are safety concerns for children with and children without learning disability the same?

Although similarly high proportions of parents in both groups had trust and confidence in both doctors and nurses, a higher proportion (84%) of parents of children without LD were completely satisfied that staff were always able to deliver safe care to their child than of parents of children with LD (77%).

Overall levels of satisfaction were high among parents with ward rounds, with activities available for their child and with going home at the right time, with no differences between parents of children with and parents of children without LD. Parents in both groups also showed high levels of agreement about staff introducing themselves [82% strongly agreed, three (2%) parents of children with LD did not agree and 11 (5%) parents of children without LD did not agree]. Similar patterns of responses were seen with regard to whether or not staff explained their role, and only six (1%) parents (all of whom were in the non-LD group) did not agree that staff were polite and approachable.

Children’s questionnaire

For the purposes of reporting data from the child questionnaire, data supplied by the child or by a parent-proxy on behalf of the child are presented together. The questionnaire was designed predominantly to answer RQ4, related to children’s satisfaction with their hospital experience. Questions focused on three aspects – the environment, people, and care and treatment – and we found no differences in ratings of satisfaction between those with and those without LD for any of these (Table 13).

Responses to the individual questions were predominantly positive (> 80%) from both groups of children, particularly in relation to their perceptions of how friendly staff were, their feeling of being safe and having trust in the people looking after them, and pain management. Children’s views about waiting, noise, sleeping, tests and treatments and having a say in decisions were less positive in both groups (59–80%).

Research question 3: are children with and children without learning disability and their families equally involved as active partners in their treatment, care and services?

The findings showed no evidence of inequality. When asked whether they had a say in any decisions about their care and treatment, > 80% children in each group responded positively.

Research question 5: are safety concerns for children with and children without learning disability the same?

The findings showed no evidence of inequality, with 98% of children in each group reporting that they trusted the people looking after them and > 96% of children in each group reporting that they felt safe when staying on the ward.

Children were asked whether they had stayed in a cubicle or a bay during their hospital stay. Of those who answered, the majority (n = 188) stayed in a bay, with 141 staying in a cubicle and 18 staying in both. A higher proportion of children who stayed in a cubicle reported a more positive experience in terms of noise, sleeping on the ward and waiting for things than those who stayed in a bay. Perceptions of privacy were high wherever children stayed (cubicle, 97%; bay, 85%; both cubicle and bay, 86%), but 10% across the groups did not feel that they had enough privacy when staying on the ward.

Children’s sticker exercise

Sixty children from phase 2 completed the sticker exercise; examples are shown in Figure 20.

FIGURE 20 Examples of sticker exercise completed by children (a) with and (b) without LD. (Figure not reproduced here; see the original article.)

The VILD chart (Figure 21) shows individual children’s (or proxy) responses to all 13 questions, enabling the comparison of responses to individual questions between children with LD and without LD and between children’s and non-children’s hospitals. The data show the variable experiences that children have, including some reporting nearly all positive responses and others nearly all negative responses, including from the same hospital.

FIGURE 21 Visual representation of children’s responses on the sticker exercise. (Figure not reproduced here; see the original article.)

As with the questionnaire, the vast majority of children with LD felt that staff were friendly to them (95%) and most, but not all, said hello to them when they met them (78%):

This was also the same for children without LD. However, only just over half (61%) of children with LD reported that staff actually told them who they were when they met them:

Staff tell me who they are? They told me what their name was yesterday, and they told me that I need to have a rest and keep calm and don’t get out of bed and don’t, well anyway, [Surgeon] has come to me and told me who they are.

Although proportionally more children without LD (77%) felt that staff did tell them who they were, there were still some who said that this was not always the case. One child, for example, said that she felt ‘a bit offended’ by staff not introducing themselves, going on to explain, ‘I wanted to say something but I didn’t know how to say it because I didn’t know their name’.

Children generally did not think that staff knew them, with only 48% feeling that staff knew what was important to them and 41% feeling that staff knew what they liked and did not like. As one mother acting as parent proxy said:

She’s actually called [nickname]. Nobody asked if she’d like to be called anything else, which I would have thought they’d do that, but no.

It was evident from the positive examples of staff knowing the child ‘inside and out’ how valuable this could be to both children with and children without LD and their parents:

Because they know me they know about all my phobias . . . We have this little sheet with a star on it and it says like my needs and how I do it, so it says talk to my mum for example and not to me and we normally hang it around the door.

We have the purple thing up there [child summary on door], it’s his level of cognition and they read it.

Right, staff knows what is important to me? That is going to be thumbs up . . . Because they, it’s very important because they always give me important stuff to do and they always listen to the important stuff.

In terms of the two questions about children’s involvement in decisions, those with LD were largely unable to answer them, and, when they did, their responses were variable. One child talked about choosing food from the menu, and another talked positively about choosing the colour of their plaster cast. A mother acting as parent proxy for her child with LD talked positively about the way hospital staff tried to involve her daughter, despite the fact she was non-verbal and did not have an effective communication device:

She can’t be understood by other people. So, yes, they did take heed of [child’s] wishes, and that was very impressive. I haven’t had to confront them. It’s been their initiative. So, that’s really impressive. They feel it as much, and respect-, they put the child first. I don’t have to advocate for her . . . they involve her in terms of informing her, and helping her participate, but she doesn’t really decide.

By contrast, another child with LD explained, with the help of her mother, that hospital staff were not able to communicate with her in the same way as her teachers did in school:

In addition, another child with LD said:

The staff doesn’t give me in a way I can understand . . . Staff don’t tell me what they are going to do for me, they don’t, they never tell me.

Involvement in decisions was suboptimal among both groups of children. This was particularly apparent in relation to decisions about care and treatment, in which only 55% of children felt always or sometimes involved. As two children without LD said:

I’d like to be a bit more involved in being able to say ‘I think I should do this’ and that kind of thing. I wasn’t involved in decisions [last week about care] but in the past sometimes I have.

I get asked what I like but sometimes they make the decisions . . . Because its mum that’s involved because she’s the parent, they don’t really ask the kids.

This child did go on to say, however, that she thought that it was appropriate that her mother was involved in making decisions.

Both children with and children without LD positively rated staff respecting their privacy:

Staff respect my privacy? That’s a thumb’s up because they always let me have a privacy . . . they shut my curtains when they come around and give me some obs. and I talk about my thoughts.

I make my own space bubble . . . They respect your space bubble because you are either talking about something personal or you’re say getting dressed or some other things that humans do not like to know about – so that’s what the curtains are for. People seem to realise that the majority of the time – so they respect that.

However, this child goes on to highlight the issue with hospital curtains and the maintenance of privacy:

Occasionally people bump into the curtain and they move it so there’s a gap and like they walk past they can see in the gap. I don’t like that . . . That’s why I prefer separate rooms, they have doors not curtains.

A greater proportion of children with LD (28%) than children without LD (10%) did not think that staff spent time with them.

Talking Mats

Fifty-nine children (or their parent proxy) completed the Talking Mats exercise, either verbally by talking about each symbol and whether they liked or disliked it or using the mat to indicate their answers. Examples are provided in Figures 22 and 23. More children without LD were able to explain the reasons for their responses.

FIGURE 22 Examples of Talking Mats responses from children with LD. (Figure not reproduced here; see the original article.)

FIGURE 23 Examples of Talking Mats responses from a child without LD. (Figure not reproduced here; see the original article.)

The Talking Mats VILD chart (Figure 24) shows the responses from individual children with LD and without LD to various aspects of their experience of being in either a children’s or a non-children’s hospital.

FIGURE 24 Visual representation of children’s responses using modified Talking Mats. (Figure not reproduced here; see the original article.)

Family was clearly important, with most children reporting ‘liking’ both parents being with them. The television appeared especially important for children with LD, and social media especially important for children without LD.

Children with LD in particular indicated that they liked being with staff in hospital (75%). One child who indicated this also said:

Staff make me feel important. Yes they do. They take the time.

Similar feedback was given by a child without LD, who also liked being with staff:

They say to me like if I’ve done something good then they say to me ‘oh you’ve done really good’ and it makes me feel quite good about myself . . . I’d like it if maybe they could have two nurses per bay instead of one so they could have more time to talk.

Two children without LD who said that they did not like being with staff indicated why that might be:

I think it was the doctor, he just came and said ‘are you OK?’ and I said ‘yes’ and he was like ‘walk’ and then he left really quickly and I was confused . . . Sometimes he walked away in mid-answer.

I didn’t want to speak to him much more – he was dismissive of anything I really said, he was like – he just kept saying ‘oh well we’ll soon be out of the hospital, you’ll soon be discharged’.

Children were also asked if they liked being with other patients in hospital, and a higher proportion of children with LD answered ‘yes’ (75%) to this question than did those without LD (50%). As one child without LD said:

I like other children of my own age and under, and maybe a few years above but I don’t really socialise with [them].

Another child without LD explained why he had answered ‘no’ to liking being with other patients:

I wish I could have been with people my own age then I could have made friends, because I get bored. So if I could have made some friends it would be nice – they could relate to you [me].

One teenager without LD suggested that staff could introduce patients on the same ward to each other to help overcome any awkwardness and help them get to know each other.

There appeared to be a clear difference in children’s perceptions of having medication, with more children with LD saying that they liked it than children without LD. However, this difference may be accounted for by the fact that the majority of those with LD had a percutaneous endoscopic gastrostomy, which may have precluded the need for any medication to be given orally.

Children’s views about food were mixed, with only half saying that they always liked it. Comments were made about the timing and the lack of choice available:

I prefer not to eat anything because I’ve just woken up and I can’t be bothered to eat then, I’d rather wake up before I eat.

This child went on to describe the different feeling he had about food at his school:

I tend to just snack at break time at school – because they have a tuck shop, it’s a happy feeling. So happy.

One child without LD also talked about the challenges of being surrounded by people who were eating when he was not allowed to.

There were lots of comments about the noise from other children, particularly for children being nursed in bays rather than cubicles. Children talked about babies screaming and crying, other children being in pain and nurses being loud. As one child without LD said:

And there was a girl and she screamed all night. She had the most ridiculous cry. It was so pathetically long. It was irritating – I wanted to strangle her.

Tests and treatments were challenging for many children, both with and without LD. Talking about having her blood pressure taken, one child with LD said:

We are confident at this stage that our data from all phases of data collection have been evidenced. The narratives from children, parents and staff have been captured. The synthesis of these data sets is the next important step to describe in this report; without that, the story told so far around inequalities across child populations in hospital would be incomplete.