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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SPEAKER:

When children are in hospital, managing any pain they experience is essential. But it’s not always done effectively. Many parents leaving hospital report that their child experienced a lot of pain during their stay, but they also feel positive about the care they received, which means something isn’t working.

Following extensive research with pain specialists across the UK and internationally, we’ve developed a framework for delivering effective pain management for children. There are four components. The first is creating knowledgeable, confident practitioners. Many nurses can feel nervous about giving too much pain medicine. And when nurses are not feeling confident, they may administer less than what’s been prescribed to be on the safe side.

The second element is the support given to those staff. Making sure they have access to relevant protocols ensures that they rely less on their own judgment and more on proven best practice. Pain protocols with well-evidenced guidelines for predictable scenarios are usually created by dedicated teams after a lot of hard work. But when the whole hospital implements them, they are shown to make effective pain management easier to achieve.

Thirdly, nurses need to involve parents and treat them as partners. After all, they have unique expertise when it comes to their child. But parents are often reluctant to point out that their child’s pain is not going away, so they need to be encouraged to speak up. Practitioners want to help, but if they don’t know a child is in pain, they can’t do anything about it.

Lastly, it’s important to take an individual approach to both the child and their family. Talking and listening to each child and finding out about their experience, understanding fears, likes, and dislikes makes it more likely that their pain can be managed effectively.

To be effective, all four components need to happen with everyone at all levels playing their part. If all practitioners start using this framework together, it can contribute to managing children’s pain a lot more effectively.

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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)

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A diagram with Effective leadership titled at the top.

In the centre, there is the label: Effective pain management, and there are four sections surrounding the centre.

From the top right, there are two boxes:

• Supporting staff with relevant practice guidance.

• Use evidence-based pain management protocols & guidance & tailor these as appropriate.

Then below this, bottom right, there are two boxes:

• Adopting an individual approach to child and family.

• Generate individual plans that consider experience, needs & situation of each child & family.

To the left of this, bottom left, there are two boxes. These are encircled:

• Empowering parents to be effectively involved.

• Communicate effectively & encourage parental participation in pain management.

Above this, top left, there are two boxes:

• Provide regular education & training to build confidence & reduce stress from induction onwards.

• Creating knowledgeable and confident practitioners.

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.