Poster Presentation COSA-IPOS Joint Scientific Meeting 2012

Applying an evidence-based approach to development and evaluation of resources for families facing advanced cancer: Lessons learned from the “Consumer Toolkit” (#440)

Afaf Girgis 1 , Sylvie D Lambert 1 , Claire Johnson 2 , David Currow 3
  1. The University of New South Wales, Liverpool , NSW, Australia
  2. Cancer and Palliative Care Research and Evaluation Unit, School of Surgery, University of Western Australia, Crawley, Western Australia, Australia
  3. School of Psycholog, Flinders University , Adelaide, South Australia, Australia

The aim of this study was to develop a Consumer Toolkit for families facing advanced cancer, which includes up-to-date literature on managing cancer challenges and assessment tools to enhance self-identification and communication of health care needs; and evaluate its appropriateness and usefulness.  The Consumer Toolkit was evaluated by 51 patients and/or caregivers and 14 health professionals, through surveys, focus groups and/or interviews. Focus groups and semi-structured interviews were audio-recorded, transcribed verbatim and analysed in relation to the study aims. Frequencies were produced from the surveys.  The Toolkit was a welcomed ‘road map’ to living with advanced cancer and addressed issues of critical importance to participants. Participants particularly valued the practical ‘top tips’ to self-manage concerns and web links to additional resources, but felt it lacked testimonials. Many found the assessment tools to be very or extremely useful to identify needs and indicated they would use them to discuss their need with health providers. Many health providers identified inclusion of these tools as one of the Toolkit’s main novelties. Perceived benefits of using the Toolkit were: increased knowledge, normalising challenges faced, encouraging active involvement in care, facilitating discussion about needs, and connecting consumers to other resources. Health providers thought that this resource could easily be integrated in practice, with their evaluation mirroring consumers’ findings.Readable and suitable patient education resources can be effective teaching aids. However, many resources are produced with inadequate attention to their suitability for the intended audience. This evaluation provided valuable insights into what families facing advanced cancer and health professionals valued most from the Toolkit. Findings can inform development of patient and caregiver resources.