Abstract
Background Cancer care for people with disabilities (PWD) is rife with uncertainty and obstacles. Not only do PWD have to contend with cancer and treatment-related sequelae, but also its impact on disabling conditions and functional capacity, as well as a health care system lacking accessibility and disability competence. Peer support can address important needs for emotional and informational support. mHealth tools for smart phones, tablets, or laptops hold promise to deliver such support in an accessible and scalable manner. This concept is unexplored for use among PWD with cancer. Objectives To describe a community-based participatory study that 1) identifies consumer-reported support needs and priorities among PWD and cancer and 2) integrates consumer perspectives into the design of an mHealth cancer support tool to address these needs and priorities. Methods Part 1 is a thematic analysis of semistructured, qualitative interviews with a purposive sample of experts in health and cancer care for PWD (n = 7) and a convenience sample of cancer survivors with preexisting disabilities (n = 9). In part 2, results were integrated to develop an mHealth peer support tool to addresses identified needs. Results Themes included 1) barriers across the cancer care continuum, 2) strengths within the disability community, and 3) recommendations for mHealth and peer support. Based on the qualitative findings, we designed a mHealth tool for peer support and information sharing among PWD with cancer. Conclusion Consumer-informed mHealth tools hold great potential to leverage strengths in the disability community to address emotional and informational needs created by a lack of disability competence across the cancer care continuum.
Highlights
To explore the cancer care experiences of people with disabilities diagnosed with cancer to identify their unmet support needs and priorities
To describe the development of an mHealth cancer support tool that integrates people with disabilities and cancer’s perspectives to address these needs and priorities
Cancer care for people with disabilities is rife with uncertainty and obstacles, from disease and treatment-related sequelae, and from its impact on disabling conditions and functional capacity, and a health care system lacking accessibility and disability competence
Summary
To explore the cancer care experiences of people with disabilities diagnosed with cancer to identify their unmet support needs and priorities.
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