Abstract: This article describes the service user involvement in a project which aimed to map, cost and evaluate services provided to the families of children adopted from care. The project included two advisory groups, one with the adoptive parents and one with the birth relatives, which met separately. This report focuses on the birth relative group, because this group was particularly disempowered, had many diverse needs and required considerable attention and sensitivity to support their involvement.
The researchers describe how they recruited birth relatives as service user consultants, and the challenges of describing what involvement would mean. The researchers worked with a birth parent support worker, who met with all of the service users individually to describe the role and to explain how their expertise would be valued. Service users were offered a choice between contributing by correspondence or by attending meetings. All the meetings were facilitated by the support worker, so they could focus on the group dynamics and the individuals’ well-being, while the researcher focused on the tasks.
The researchers paid a lot of attention to the practical details of each meeting with the group and at all stages of their involvement. This helped to demonstrate respect and ensured that there were no practical barriers to prevent anyone from taking part. At the data analysis stage, the researchers took a novel approach to involve the group in analysing qualitative data. They produced recordings of parts of the interviews (read by actors) which the group listened to and commented on. This avoided problems with people not being able to read large amounts of text.
At the final launch event, when service user consultants took part in a Q&A panel, a room was booked solely for their use with a support worker on stand-by, so that there was a safe space available. This was used throughout the day.
When asked what helped to make the involvement work well, the service users reported that it was the practical support and respect from researchers that made the difference – it was often the small gestures and basic compassion that allowed trust to develop and meant that the group remained involved and committed right to the end. The researchers also thought it was important that the project was aiming to bring about change, as the service users’ main motivation for being involved was to make services better for others.
From the researchers’ perspective, involvement was time-consuming, resource-intensive and sometimes emotionally draining, particularly as the researchers were learning about involvement themselves alongside the service users.
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Categories: journal article service users and carers researchers research commissioners lessons from direct experience of involvement description of involvement in a research project designing of research recruitment analysing and interpreting data writing up and disseminating implementation and change recruiting people to be actively involved in research involving seldom heard groups General guidance on involving the public in research training and supporting researchers
Date Entered: 2015/04/28
Date Edited: 2015/04/28