As a specialist nurse, you play a vital role for children with Hunter syndrome and their caregivers.
You help them with a lot of the day-to-day issues involved in living with the condition. It’s likely you’re the first person families turn to when they have questions about their child’s care, for example.
Caregivers may also benefit from having structured emotional support from you. Perhaps you already find families turn to you for this kind of help. Others may find it more difficult to ask for it.
Whether caregivers ask for support or not, it’s likely they have emotional needs that aren’t being met.1 Having a child with any long-term condition can be extremely challenging for caregivers. And research shows caregivers to children with Hunter syndrome may have a low quality of life.1
After all, they’re living with children who have a range of challenging physical, developmental and behavioural symptoms. These symptoms are likely to result in children needing constant help with many aspects of basic daily living, such as washing, dressing and eating.1 Caregivers have a lot of responsibilities.
They may also be living with lots of difficult emotions around their child’s condition, including grief and a sense of hopelessness.2
The information here tells you more about training available to you in simple techniques from an approach called Acceptance and Commitment Therapy (ACT). This training is designed for specialist nurses like you. It will give you the skills and confidence you need to offer emotional support to caregivers in the most effective way. As part of this training, you’ll be given a handbook and activity worksheets you can use with caregivers.
This isn’t meant to replace other support services available to caregivers. It just gives you a more structured way to offer families the emotional help they need. You’ll learn exactly why each step in this approach is useful for caregivers, and that should help you feel more confident about offering it. The training will also make it easier for you to stay within your professional boundaries while you support the families in their very challenging circumstances.