Using a four-step co-design model to develop and test a peer led web-based resource (PLWR) to support informal carers of cancer patients.


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Olinda Santin1,Theresa Mc Shane2,Gillian Prue1
1Queen's University Belfast,2Queens University

Abstract

Background

1.5 million people aged 16 years and over in the UK are caring for someone affected by cancer. In response to rising informal cancer carer pressures, the team co-designed with cancer carers and health care professionals (HCP) a peer-led web-based resource (PLWR) to provide cancer carer specific practical and emotional advice on common carer issues. The acceptability of the resource was determined through user testing; examining carer’s experiences of using the PLWR and their ratings of the various components.

Method

A four step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n=12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised. Google analytics explored site visits, commonly used components, and time spent using the PLWR.

Results

The PLWR was developed to deliver cancer carer information tailored to each stage of the illness trajectory regardless of cancer type, in the form of videoed personal experiences. From November-May 2018 there were 2,789 unique visits to the PLWR with 743 returners. The majority of time was spent on the full unclipped peer stories (414 views), and diagnosis specific information (159 views), with less time spent on bereavement, cancer treatment, or self-care (120 views each). Fifty-five individuals completed the resource evaluation, with 10 participating in telephone interviews. Fifty-four carers rated the resource as excellent, useful, and easy to use. The web-based videos were regarded as convenient and less burdensome than written information. The resource provided relevant information, potentially reducing isolation and uncertainty.

Conclusion

The content and design of the PLWR appears acceptable to cancer carers. The co-design model is an effective way to develop appropriate information for service users and could be utilised as a framework for development of other interventions in a variety of disease groups.