STAND UP – Exploring STANDardised outcome measures Use with Parents

STAND UP is a new project which is currently being established within (opens in a new window)Barnardos. The main aim of the overarching project is to embed the use of standardised outcome measures (SOMs) with parents attending Family Support services. The mission of Barnardos is to work with families, communities, and partners to transform the lives of vulnerable children who are affected by adverse childhood experiences. In 2021, 14,234 children and parents benefited from Barnardos’ supports. However, the collection of high-quality data in relation to the needs and outcomes of service users is central to ensuring that the work of Barnardos is needs-led and evidence-informed.

Involving service users, through PPI activities, in the development and implementation of routine data collection and needs and outcomes measurement in health and social care settings is desirable and worthwhile, but this is not yet widespread practice. Accordingly, the STAND UP project seeks to develop, establish and run a parent/carer service user panel which will serve to provide collaborative input to the process of implementing SOMs into Barnardos Family Support services.

Our next steps are to run a series of workshops in which parent/carer service users will collaborate with Barnardos and UCD researchers in order to develop understandings around three key domains:

1. Identifying parents/carers priorities in relation to outcomes and areas of interest that can inform the selection of SOMs which can be used in Barnardos Family Support services
2. Developing better understanding of structural and pragmatic barriers/facilitators to routine data collection at the service level
3. Exploring acceptability and perceptions of research activities amongst parents/carers

We anticipate this project will help us to better tailor measures to their needs by focussing on outcomes that are valued by families and using measurement tools that are accessible and acceptable. Establishing this PPI group will also serve as a pilot/model for future PPI work within Barnardos relating to other issues.  

Barnardos are uniquely placed to recruit and run a PPI initiative with a ‘seldom-heard’ group, given our existing work and engagement with vulnerable children and families. A large majority (78% in 2021) of families who engage with Barnardos services would place on level 3 and 4 on the Hardiker Level of Need Scale, indicating the presence of complex difficulties including neglect, abuse or mistreatment within the family or at the most severe end of the scale complete family breakdown or involvement with the criminal justice or care systems. We aspire to develop our PPI activities into something that is mutually beneficial, by giving a voice to service users, developing our understandings of their needs, concerns, and priorities and ensuring we have the tools to design a SOMs framework that is fit for use.

We also believe the model we develop through this project will be of significant value to Barnardos and other similar organisations as it will provide the opportunity to effectively pilot a universal design for PPI within a research-performing children’s charity. This will provide a template for further, sustainable engagement and participatory work together with service users. It will also enable us to have a foundation to extend PPI to include our younger service users in the future.

Team: Hannah Stynes (Barnardos), Grainne Hickey (Barnardos), Prof Eilis Hennessy (University College Dublin)