Optimizing Rural People's Access to Relevant Cancer Education and Support Using Peer-Led YouTube Films.

Rural cancer patients have inferior cancer outcomes and unique unmet information needs. This paper explores the value of rural people affected by cancer delivering cancer-related education and support to their peers via 3-5 min online YouTube films. In part 1, 14 rural Australians affected by cancer (10 survivors, 4 carers), 50% (7/14) female, 55-79 years, "storytellers", were purposively invited to be filmed sharing their cancer-related experience and advice for others facing similar challenges. They then reflected on their storytelling experience during semi-structured interviews with an independent researcher. In part 2, 11 rural South Australians affected by cancer (8 survivors, 3 carers), 82% (9/11) female, 32-75 years, "viewers", who had watched at least three of the videos, were interviewed. When data saturation was reached, thematic analysis was employed. Storytellers were found to be highly satisfied with the film-making process and product. They valued rapport building prior to filming and the opportunity to help others. They also found storytelling cathartic and the films useful in communicating their cancer experience to family and friends. Rural viewers appreciated the honesty, authenticity, relatability and believability of the storytellers, the practical advice on rural-specific psychosocial issues, acknowledgment of the impact of isolation and the opportunity to understand others' cancer experiences. The film's short duration and professional film-making added appeal. Inclusion of younger storytellers and methods of delivery other than YouTube were suggested. This study highlights the value of this approach for storytellers and viewers. It may be particularly beneficial for isolated rural cancer survivors who feel that their unique challenges are not adequately addressed by mainstream cancer education resources However, further quantitative research to test acceptability and impact in representative rural samples is required.

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice.

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.