Development and implementation of a nurse delivered caregiver support program

Spec and Smart Content


The challenge:

Create a pilot programme of nurse-delivered emotional support for caregivers of children with a rare metabolic syndrome, given caregiver emotional burden can have a negative impact on the child’s treatment management.

What we did:

  • Conducted a rapid evidence review to inform strategy and blueprint
  • Held discussions with local markets to understand existing services, unmet needs and challenges
  • Created a programme strategy and blueprint, including detailing of rationale and objectives
  • Produced a nurse handbook with accompanying training and worksheets for caregivers, rooted in proven psychological theory.

The outcome:

We delivered a face-to-face caregiver support programme with a sound behaviour change basis, with flexibility for local market needs. At each stage, all markets felt included in the process and supported the direction of the project. We have been contracted to develop the digital interpretation of the programme to be launched Globally.




Rare Disease