Drawing on data collected from home interviews and the safety review form, this chapter focuses on parents’ safety concerns and the impact that such concerns had on their health and well-being. Also included are parents’ views about the complaints process. In conjunction with the safety issues related to the environment described in Chapter 8, the evidence presented contributes to answering RQ5, concerning whether or not the safety concerns of parents of children with and those of parents of children without LD are the same.
Parent interviews
The majority of parents of children with LD described having concerns about their child’s safety while in hospital, which prevented them from leaving their child’s bedside unless this was absolutely necessary. Sometimes this was limited to when the child was asleep, and sometimes not even then. An understanding of their child’s increased vulnerability resulted in parents feeling that they needed to be constantly vigilant:
I can’t leave her, she’s got a learning disability and she’s too vulnerable for me to leave, I just can’t. I’ve never left her, I can’t do it, it’s not an option.
This was the case even for a child in intensive care who had 24-hour supervision, with the parent leaving the bedside only when the child was asleep and being cared for by a nurse ‘that I knew would call me or knew child well enough to know what she’d need’.
A number of factors facilitated parents feeling that they could leave their child’s bedside even if they did not choose to, including being supported and encouraged to have a break:
I could have gone home and come back again and cooked a pot of food if I wanted. They were really supportive. I think they would encourage you to take a break, to go outside, to have a break, to rest, to have a coffee or just go out, breathe air.
Absolutely key to instilling confidence in parents was feeling able to trust staff to stay with their child while they were gone:
They’d say, ‘Yes, we’ll watch her’. I’d come back and, nine times out of ten, either the play nurse would be with her, just talking because she was quite happy, or the nurses would be stood at the end talking and chatting to her.
The promise nurses frequently gave of ‘keeping an eye’ on their child was often not good enough for parents, who felt that nothing short of constant supervision was needed. If parents did choose to leave, then staff reporting back how their child had been during that time was important, including any care that had been provided. Parents reflected on experiences, from the current or previous admission, of leaving their child briefly and coming back to find that they were unsupervised or in potentially dangerous situations, reinforcing concerns about trusting staff to keep their child safe:
He was literally hanging out the bed and there were three nurses stood about 3 m away from him, all stood there chatting . . . I am scared of that happening again because next time, it could be more serious. He could get his neck trapped . . .
Keeping the child safe meant knowing what to do in the context of each child:
We left him with three nurses while we went to make a cup of coffee, he came back and he’d stripped off all his clothes and his nappy, and he’s stood there weeing on the floor while there’s three nurses just stood watching.
Parents were concerned about not only physical harm but also emotional well-being; being alone in an unfamiliar environment could cause the child distress:
For him to be in a strange environment is one thing, but to be in an environment that he doesn’t know, with people he doesn’t know, and no-one to soothe him, it can make anything worse . . . Nobody can really take over, that period that you’re there, so, it’s nice that they offer, but the reality is that they can’t do anything.
A delicate balance was described in managing the physical and the emotional well-being of children with LD, whose need for routine and familiarity can be an important feature in an assessment of their risk. Many parents highlighted the increased vulnerability that came from their child being unable to communicate, which precluded the child asking for help but also meant that they were not able to express their needs and wishes or say if anything was wrong. For many, their child’s inability to recognise risk or manage their own safety made them particularly vulnerable to injury and harm (parent quotation 10; see Appendix 9). One mother mentioned her daughter’s inability to recognise when it was and was not appropriate for people to examine her, because ‘she hasn’t got that full understanding . . . she will trust them to do whatever they want’:
When they say, ‘You can leave him,’ but you can’t. I was trying to think how it would be if it was one of my other children. I wouldn’t want to leave them either, but at least if I had to leave them, I’d know that they can ask for what they need. If they want to talk to somebody, they can make a phone call. They can communicate, so it just isn’t an option to leave him somewhere where he doesn’t know anybody.
The numbers of nursing staff on shift and perceived level of ‘busyness’ was another factor in parents’ decision about whether or not to leave their child’s bedside. The level of monitoring some children received in hospital could be less than they had at home, with one-to-one care and the use of cameras described. As one parent, whose child was blind and had severe epilepsy, pointed out, ‘why would we risk walking off, no camera on her, when the nurse is too busy?’. A suggestion was to have trained volunteers available to sit with children with LD, helping instil confidence in parents to leave. This parent went on to say that having a break for an hour would ‘mean the world’.
Parents’ sense of trust was influenced by the care of other children they witnessed on the ward:
He [other patient] had his tube in but he was still being fed. His mum had to take a call and she had asked the nurse to keep an eye on him . . . the nurse had to attend to something quickly, and while she was on the phone, he was climbing out of his bed, and trying to walk away.
This was not reported as something that happened frequently during admissions or indeed during every admission, but one incident of poor care or a near miss could have an impact on parental trust for all future admissions. In some cases, parents reported that this impact was felt even years later.
Trust and the need for vigilance were also described by parents of children without LD; they described their responsibility as a continuum of vigilance, which differed in nature and intensity to the constant sense of heightened vigilance described by parents of children with LD. Their confidence in leaving their child for any period of time was influenced by their trust in hospital staff to both provide adequate care and ensure parental involvement in decision-making. Their decision was not always associated with safety, as was primarily the case for parents of children with LD, but leaving a child who was anxious: ‘I don’t think I would ever do that’. Trust was sometimes about the whole hospital or unit or, as with parents of children with LD, limited to specific staff members’ presence and an overall sense of the quality of the care being provided to their child:
It depends who’s taking care of [child] that day because they are people doing the job by the book . . . sometimes I know from the first point in the morning that on that day I will have to be watching like a meerkat to go and get the medication at 2 o’clock, to ring the buzzer or something to make kind of waves like, ‘we are here’.
For example, a mother of a 13-year-old said, ‘If I had to fly to Australia I would leave her at the [non-children’s hospital] all day long . . . I wouldn’t trust them [children’s hospital] as far as I could throw them’. Presence meant that parents often chose to stay overnight with their children and also at particular times of the day, such as meal times. This was either because their child would be reluctant to ask for assistance or related to the stability of their condition. On the whole, parents were more confident about leaving older children, with a mobile phone providing a sense of security and a safety net for communication. This increasing confidence had evolved over the time of the child’s illness trajectory. Many children had been diagnosed with their long-term condition at an early age, and, over time, their parents’ confidence had grown, reflected in parents’ willingness to leave their child for long periods of the day and night. Other factors that facilitated parents’ decisions to leave their child were being in a hospital that was relatively close to their home, the health status of their child improving, and trusting staff to contact them if there were any changes and/or providing updates on their return.
As previously mentioned, in a small number of examples a lack of attention to the child’s view had had a highly significant impact on the child’s hospital admission, including on their treatment success, length of stay and emotional well-being. As with parents of children with LD, previous experiences of poor care led to parents choosing to be present during the majority of their child’s hospitalisation. This presence provided a further safety check, or if there was a trusted member of staff to either prevent errors or their recurrence then they would feel confident to leave their child, knowing their child would be safe. Trust in staff was crucial to all parents. The perceived barriers to and facilitators of the safety of children with LD in hospital are shown in Figure 17.
FIGURE 17 Perceived barriers to and facilitators of children with LD being safe in hospital (parent interviews) (RQ5). (Figure not reproduced here; see the original article.)
Safety review form
Thirty-two of the parents of children with LD (78%) and 14 of the parents of children without LD (67%) completed the safety review form, highlighting safety concerns or good practice in relation to six domains, including ‘other’. Their responses are captured in a visual individualised Likert display (VILD) (Figure 18) that enables comparisons to be drawn between parents of children with LD and parents of children without LD and between children’s hospitals and non-children’s hospitals.
FIGURE 18 Visual representation of parents’ views about safety and good practice in relation to six safety domains. (Figure not reproduced here; see the original article.)
Starting with medication, the majority of comments from both parents of children with and parents of children without LD were positive. Parents valued being given control over the administration of their child’s medication, and, in cases where staff were in control, they were mostly vigilant in terms of checking the patient’s details, ensuring that the drug chart was signed and keeping medication locked away. Parents of children without LD referred to poor symptom management in relation to pain and vomiting; there was one incident of a child’s medication not being put back in the fridge when it was no longer needed. Parents of children with LD appeared to have more concerns with greater implications. There were two issues related to delayed epilepsy medication, which had the potential to have an impact on the control of seizures, as well as two near misses requiring parents to intervene to prevent an incorrect dosage and incorrect route of administration. Insufficient overnight feed was also described, as well as issues with the documentation of medication prior to discharge, hygiene and storage of medication on the ward. Parents in non-children’s hospitals expressed fewer concerns (11%) than parents in children’s hospitals (50%).
Equipment was a concern for both groups of parents, irrespective of whether they were in a children’s or non-children’s hospital. Space was generally a problem, and, in addition, some equipment/supplies were not available and staff lacked the confidence and capability to use the equipment. A number of comments were made about resources such as televisions, toys and games, and sockets being broken. Several concerns were expressed specifically about equipment not being suitable for children with LD, as well as a lack of staff awareness of this equipment, which support the findings reported in Chapter 8.
With regard to staff communication and the provision of information, approximately two-thirds of parents were positive, describing staff as friendly, accessible and honest. Several parents of children with and children without LD reported having things explained well, including to their child. Concerns were expressed, however, across a number of areas, including a lack of availability and trust in staff and poor communication between them; inconsistent or incomplete information; lack of privacy; and lack of follow-up. Several parents of children with LD felt that there was a lack of direct communication with their child. They reported that staff lacked understanding of their child’s needs, and this was also the case for the parent of a child who did not have LD but who had dyslexia.
Feedback about hygiene and cleanliness on the ward was mixed, with parents of children with and children without LD reporting both positively and negatively on the frequency, quality and timing of cleaning. There were no comments, positive or negative, that related specifically to a child’s LD or long-term condition, except in the case of one parent of a child with LD who commented on her daughter being left in soiled pads because of a lack of hoisting equipment.
In terms of unexpected complications of care, those reported were nearly all from parents of children with LD and mostly from those staying in children’s hospitals (see Figure 18), possibly reflecting the nature of the admission in those cases. Examples included the occurrence of pressure sores, infection, a lack of care co-ordination leading to repeated finger pricks for blood tests, cannula ‘tissuing’, multiple ward changes causing the child emotional distress and not being able to feed the child.
Nearly all of the ‘other’ issues raised were from parents of children with LD, and all but one of these were safety concerns rather than examples of good care. These included issues related to access to the hospital, staffing levels, vigilance in terms of people entering the ward and not feeling able to leave the child, night-time disturbances, privacy and handling by porters.