Co-production of an e-learning resource (CaSPER)

Co-production and evaluation of an e-learning resource to improve knowledge about schizophrenia and engagement with services in African Caribbean families

This was a  National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) funded study based at The University of Manchester. The study was led by Dr Dawn Edge, Senior Lecturer and member of the African Caribbean community in Manchester.

Please note that this study closed in August 2018.

Background to study

Educating families about schizophrenia reduces family tensions, facilitates engagement with services, and improves patient and carer experiences and outcomes. No culturally-appropriate resources specifically aimed at African Caribbean families with schizophrenia are available.

The primary aim of the study is to co-produce an educational e-resource with African Caribbean stakeholders to improve families' attitudes and knowledge about schizophrenia and facilitate engagement with services. To achieve this, the research team will:

  1. Gather up-to-date literature and hold focus groups about constructing and delivering the intervention.
  2. Produce content identified by African Caribbean stakeholders in focus groups; content will illustrate key topics about schizophrenia from a number of perspectives (e.g. service user, parent, child, sibling, professional).
  3. Developing content and design in collaboration with African Caribbean stakeholders.
  4. Examine participants' knowledge and attitudes (before and after the intervention and 6 months later) in question and answers related to content and reflect on personal experiences.
  5. Test feasibility, acceptability and accessibility of the intervention and collect data
  6. Analyse data and publish findings

Progress

We completed Phase 2 of the project in December 2016. In Phase 2, we conducted the following focus groups to develop the resource:

1. Former African Caribbean service users with a diagnosis of schizophrenia

2. Family members, relatives and carers of persons with African Caribbean heritage and a diagnosis of schizophrenia

3. African Caribbean community members

4. Mixed group of young relatives and commmunity members

5. Mixed group focused in the design and appearance of the resource

All these focus groups have informed the research team about the content, the appearance and usability-related issues of the resource. For example, we asked the participants to identify issues relating to mental illness that is particularly important or salient in their community.

We completed Phase 3 of the project in September 2017. This phase entailed creating content based on feedback from the five focus groups outlines above. Our IT and health informatics specialists designed a learning resource based on focus group based on focus group feedback. We also asked feedback on the first version of the learning resource from relatives, carers and community members, and refined the resource further.

We then moved on to Phase 4. This phase was about testing the CaSPER resource to find out how people find using it, whether they find it helpful, and how it could be improved. We compared two groups: a group of participants who used CaSPER and a group that did not use CaSPER until the end of the study. We did this to find out whether CaSPER can help people. We found that...

  • People who tested CaSPER improved their knowledge about psychosis in the short-term. There was no change in the group that did not use CaSPER during the study.
  • CaSPER did not change people's attitudes about severe mental illness.
  • We found that both groups' physical health improved during study. However, this was due to other reasons than CaSPER. There was no change in mental wellbeing.

Please contant Lead Researcher Dr Dawn Edge or Research Project Manager Dr Henna Lemetyinen for further information about the project, such as study findings, or other research opportunities.