This chapter describes parents’ experience of their child’s discharge, as well as the views of community staff about the admission and discharge process and communication between the community and the hospital. The data presented contribute to answering RQ1 about equality of access to high-quality hospital care that meets the particular needs of children with and children without LD.
Parents’ experiences of discharge
Just under one-third of parents of children with LD described experiencing a timely/early discharge, making reference to medications and/or discharge letters being ready in time for them going home. One parent of a child with extremely complex needs positively described the role of a discharge co-ordinator in improving her experience of discharge. As noted in a parent diary, ‘We were told today that we would be discharged tomorrow . . . All the necessary plans were put in place to ensure that discharge would run smoothly’.
Just over half, however, described challenges that resulted in some form of delay; the main issue was medication, with some waiting as long as 5–6 hours for it and others leaving without the medication prescribed, sometimes with a plan to return for it later. It was apparent that once a child with LD has heard that they can go home, waiting to do so could become a real challenge for them and subsequently their parents. Several examples were described of a more extensive delay to the child’s discharge as a result of staff-related issues, such as doctors not being on the ward to sign the necessary forms, the relevant people being on annual leave or staff shortages during a bank holiday.
Other reasons for a delay included unexpected health-related complications as a result of a lack of preoperative preparation, and issues with community support, including conflict about who was responsible for the child’s package of care and equipment delays:
Had it been managed and planned as everybody would probably have wanted it to be, I think we probably could have been there for 2, maybe 3 weeks tops. Now, I feel like we’ve wasted everybody’s time and everybody’s wasted our time. Eight weeks bed-blocking isn’t right . . . we weren’t willing to go until we were sorted. We were just waiting.
In terms of parents feeling ready to go home, several positively described how they had been actively involved in the decision:
She said, ‘You can go if you feel like you can handle him at home,’ and then she did the, ‘Make sure you do come back up–’ He’s got open access so all I have to do is make a phone call and I can get him back up there.
Nursing staff checking in with parents prior to discharge and input from therapists were seen as helpful. Only one parent, whose child with LD required very complex care, referred to a discharge planning meeting. They spoke positively about having a clear plan of care including the necessary risk assessments.
One-quarter of parents felt that they had not been ready to go home when they did. A lack of warning or preparation was described, for example in relation to feeling equipped to provide the necessary care, having the necessary community support in place or being well informed, with an appropriate plan of care.
One parent reported feeling insecure and anxious about the responsibility she had for her child’s feeding regime at home, which she felt was handed over too quickly, compounded by inconsistent advice from the dietitian and other health-care professionals. Another parent described the discharge process as abrupt and traumatic, feeling that they had been kicked out when neither her nor her child was ready to leave. This was echoed by a parent who questioned the basis for her child being sent home:
I felt like they just turfed us out really, because he wasn’t coping, but I don’t know whether physically it was done for the right reasons. I understand mentally it was, but there needs to be some sort of, like, mix of the two.
Many parents talked about their experience of post-discharge follow-up, with numerous examples provided of things that went well and things that did not. Although some parents talked positively about appointments, equipment/supplies and community support being in place, others described these as absent.
Discharge letters were sometimes missing or lacking correct information; one parent reported that her child was unable to go back to school without this. A number of issues were reported in relation to changing dressings, with parents feeling uncertain about when bandages/stitches had to be removed, feeling left to arrange the dressing changes and not being sent home with any or enough dressings. There was a lot of criticism from parents of children with and parents of children without LD that postoperative community care for children who had undergone scoliosis surgery was non-existent.
Although some parents welcomed having a follow-up call and/or being given the details of someone to contact if they had any concerns, others felt left to get on with things and that they had to arrange their own community/hospital follow-up:
[Child] comes home in spica but we don’t really get any support, so we’re just, kind of, sent home to manage it . . . now I think we just accept it . . . we’ve asked for things such as changing tables because we have to change [child] on the floor . . . we’re just, kind of, left to manage that.
A number of children experienced complications following discharge that required community input or readmission to hospital, primarily as a result of pain, infection or breathing difficulties. Some parents felt well supported, with one doctor saying that perhaps the child had been discharged too early. Other parents, however, struggled to have their concerns realised by the hospital:
I called the ward . . . I said, ‘My daughter is having a high fever. I didn’t want my child to be discharged and now she’s discharged and she’s hardly eating any food,’ as in the hospital she was not eating and I was still discharged . . . He said, ‘We can’t do anything. You are discharged from here’.
Importantly, one parent who wanted reassurance following discharge said that, although she had known she could call the ward, she had not done so. A sense of not wanting to waste doctors’ time was also given.
These challenges were more or less the same for children without LD. Frequent delays were reported in children being discharged. The most likely cause was a delay in medications being ready. In hospitals that were more local to home parents managed this by electing to use their current supplies if there had been no changes or choosing to return to the ward later in the day to collect the medications. Lack of support in the community setting – home adaptations, community therapy and a continuing care package – was a further cause of delay to discharge for some children. Lack of transport to take the child home was also a challenge. On the whole, discharge remained variable, and it depended on staff putting in place processes and parents making sure that it was done in a timely way.
Community staff survey
Community staff were asked eight questions about preparation for admission, communication between the community and the hospital, and meeting needs and discharge in relation to children with and children without LD (Table 11). Overall, community staff reported that preparation of and communication about children with LD was poorer than it was for children without LD. Communication between community services and the hospital was reported to be poorer for children with LD before admission and at discharge (i.e. both from the community to the hospital and the hospital to the community). Communication between primary, secondary and tertiary care was also seen to be less effective and less timely when it was in relation to children with LD than when it was in relation to those without LD. Community staff did not perceive children with LD to be more likely to experience a delay in admission due to factors beyond their control than those without LD, but delays in discharge were seen to be more likely for those with LD. In terms of their own ability to meet the needs of children after hospital discharge, community staff felt less able to meet the needs of those with LD than those without LD.
| Individual questions | Children with LD (%) | Children without LD (%) | Comments | ||||||
|---|---|---|---|---|---|---|---|---|---|
| 1 (SA) | 2 | 3 | 4 (SD) | 1 (SA) | 2 | 3 | 4 (SD) | ||
| In the community, CYP are always helped to prepare for their hospital admission | 6 | 33 | 48 | 13 | 9 | 40 | 43 | 9 | z = 4.00; p < 0.001 |
| Prior to admission, community services always share information with the hospital about the needs of the CYP | 8 | 32 | 47 | 13 | 8 | 40 | 40 | 12 | z = 3.05; p = 0.002 |
| Prior to discharge the hospital always shares information with community services about the needs of CYP | 5 | 27 | 46 | 23 | 6 | 31 | 49 | 15 | z = 4.17; p < 0.001 |
| I feel able to meet the needs of CYP after their hospital discharge | 9 | 48 | 35 | 8 | 13 | 53 | 29 | 5 | z = 3.63; p < 0.001 |
| Communication between primary care, secondary care and tertiary services about the needs of a CYP is always effective | 1 | 24 | 51 | 24 | 2 | 32 | 51 | 15 | z = 6.15; p < 0.001 |
| Communication between primary care, secondary care and tertiary services about the needs of a CYP is always timely | 1 | 23 | 53 | 23 | 2 | 27 | 53 | 18 | z = 3.60; p < 0.001 |
| VF | F | IF | N | VF | F | IF | N | ||
| Frequency of admission of a CYP to hospital being delayed because of factors beyond the family’s control | 5 | 44 | 50 | 0 | 2 | 48 | 49 | 2 | z = 1.94; p = 0.053 |
| Frequency of discharge of CYP from hospital delayed because of factors beyond the family’s control | 6 | 48 | 45 | 0 | 3 | 45 | 50 | 3 | z = 3.85; p < 0.001 |
This chapter has illustrated the highly variable experiences that parents have of their child’s discharge, with things seeming to go either very well or not at all well in terms of timeliness, feeling ready to go home and receiving follow-up community support. The range of barriers to and facilitators of a good discharge from the perspective of parents is shown in Figure 19. The findings from the community staff survey reveal inequalities in the needs of children with LD being met in the community, the timeliness of their discharge from hospital, and communication between primary, secondary and tertiary services.
FIGURE 19 Perceived barriers to and facilitators of a good discharge for children with LD (parent interview, community staff survey) (RQ1). (Figure not reproduced here; see the original article.)