Mental health in people living with and beyond colorectal cancer: A patient-oriented constructivist grounded theory.

BACKGROUND: With the burden of colorectal cancer in Canada, there is a need to address the psycho-oncologic challenges, including mental health. This study aims to explore the lived mental health experiences in patients with CRC across the phases of the CRC care continuum. METHODS: We employed a patient-oriented constructivist grounded theory design and recruited English speaking participants ≥18 years, diagnosed with CRC within the last 10 years, residing in Canada. We collected data through semi-structured individual interviews using a guide co-constructed with patient research partners. Data collection and analysis were iterative, employed theoretical sampling, and culminated in a theoretical model. RESULTS: Twenty-eight participants diagnosed with CRC (18 females, 10 males), aged 18-63 years at time of diagnosis were interviewed, with representation across all CRC stages. There were 10 participants (36%) in treatment, 12 participants (43%) in follow-up, and 6 participants (21%) in the beyond phase. We constructed a patient-oriented theory illustrating the dynamic nature between one's self-identity and their mental health experiences across the CRC care continuum. Mental health experiences encompass emotional and cognitive-behavioral responses, expressed differently across phases. Mental health care experiences are also shaped by barriers, facilitators, and individual contextual factors, all of which influence their access to care. CONCLUSION: Our theory provides insight into the mental health experiences of patients with CRC across phases of the CRC care continuum. Understanding patients' emotional and cognitive-behavioral responses and care experiences can help identify opportunities to integrate mental health into CRC care.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.