Abstract

In response to CHiSP (Fraser, Jarvis, Moran et al., 2015) an integral part of CHAS’ strategy is to offer practical help and sibling support to families caring for a child with a life-shortening condition in their own homes. We embedded an outcome measurement approach to the pilot from planning through management to reporting as understanding the impact of the support offered was a crucial underpinning of the project.

In developing our impact measurement approach we identified key stakeholders. We listened to what families and volunteers were telling us at pre-planning stage and developed outcomes. We designed a monitoring system using indicators from the Getting It Right For Every Child (GIRFEC) wellbeing framework. This framework, designed by the Scottish Government – a major funder of CHAS - is widely recognised allowing us to easily disseminate findings and communicate with a significant investor. Indicators informed outcome ‘webs’, bespoke data collection tools applied through semi-structured interviews with stakeholders throughout the pilot. A variety of activities, including Lego and board games, were used to support the interview process with siblings supported by the pilot, while completing an easy to understand child’s web. Interviews were used as a volunteer management tool, helping with supervision, identifying challenges and developing the pilot.

The pilot has been recommissioned as we have proved demonstrable value to the families and volunteers, whose involvement in the planning and decision making process developed a service that really works. A service provided ‘with us, not to us’ was important to families who had a real say in their care. We were able to effectively communicate our success to wider audience in terms that were recognisable and familiar and are now in discussions with a potential funder to scale up this project from the pilot phase, initially in four local authority areas, to cover the whole of Scotland.