# 1 Parent/carer experiences of their child in pain

The focus in the first OpenLearn course, Promoting the effective management of children’s pain, was on the four elements that make up the framework for the delivery of effective pain management to children in hospital (Figure 1). Watch Animation 1 which summarises the key points for each section of the framework.

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Transcript

This course will predominantly focus on how parents/carers can be empowered to be involved in the management of their child’s pain whilst in hospital. You will look at the findings of two studies. The first study focuses on parents/carers’ views of how they can engage more with nurses and healthcare professionals when their child is in hospital and experiencing pain (Simons and Plowright Pepper, 2024), and the second involves cognitive interviews with nurses, parents and children and young people (Simons et al., 2024). The course will also include findings from other published work focussing on the management of children’s pain in hospital.

Figure 1 Framework for delivering effective pain management (Simons et al., 2020)

Hospital experiences often involve pain, with up to 80% of hospitalised children having at least one painful procedure every 24 hours, with a mean of 6.3 painful procedures per day (Kammerer et al., 2022). Understandably, for parents/carers with children in hospital, the experience is often stressful and difficult. Eccleston et al. (2021), in the first ever Child and Adolescent UK Health Commission on children’s pain, calls for parents/carers to be involved in decisions relating to pain management in their infants and children, so that their views and values are considered.

Parent participants in Simons and Plowright Pepper’s study (2024) described hospitalisation as ‘stressful, bewildering, quite frustrating’ and that often ‘parents can feel quite lost’. When compounding this with their child also being in pain, parents described feeling helpless, intimidated, nervous, worried, not in control, anxious and guilty.

One study participant said: ‘You feel you’re letting down your child if they are in pain’, whilst another said they ‘feel a bit hopeless’ (Simons and Plowright Pepper, 2024).

Many parents also experience feelings of guilt when their child is in pain with one saying: ‘A lot of the parents think that they’ve signed the consent and sent their children to theatre and now their child is in pain, so it’s their fault and they blame themselves for the children being in so much pain.’ Parents reported feeling that they should be part of the team caring for their child in hospital and that providing pain relief was one of the ‘basics’ parents should be able to offer (Simons and Plowright Pepper, 2024).

Empowering parents/carers to be effectively involved in the management of their children’s pain can help to alleviate some of these feelings of guilt, as well as minimise the child’s pain. In the following sections you will look at some of the things that are currently helping and hindering this from happening, before turning to look at how nurses and parents/carers can work together.

OpenLearn - Promoting the effective management of children’s pain – part 2
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