Mothers with cancer report guilt associated with failing to successfully balance their parental roles and cancer. This study utilized a cross-sectional mixed-methods design and intersectional framework to investigate the multiple roles that mothers with cancer assume and their perceived coping ability. Participants included mothers diagnosed with any type or stage of cancer, in treatment or ≤3 years post-treatment, and experiencing cancer-related disability with a dependent child (<18 years, living at home). Participants completed a questionnaire battery, semi-structured interview, and optional focus group. Descriptive statistics, correlations, and thematic inductive analyses are reported. The participants’ (N = 18) mean age was 45 years (SD = 5.50), and 67% were in active treatment. Their role participation (M = 42.74, ±6.21), role satisfaction (M = 43.32, ±5.61), and self-efficacy (M = 43.34, ±5.62) were lower than the general population score of 50. Greater role participation and higher role satisfaction were positively correlated (r = 0.74, p ≤ 0.001). A qualitative analysis revealed that the mothers retained most roles, and that their quality of life depended on their capacity to balance those roles through emotion-focused and problem-focused coping. We developed the intersectional Role Coping as a Mother with Cancer (RCMC) model, which has potential research and clinical utility.
Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.
Adolescents and Young adults (AYAs: 15–39 years) diagnosed with cancer face unique medical and psychosocial challenges requiring specialized care. This study conducted an environmental scan of AYA-specific programming and services currently offered across Canadian tertiary care centres. Key informants from pediatric and adult cancer centres in Canada reported on program logistics, AYA specialized staff and training opportunities, and collaboration between centres, funding, and specific areas of interest for AYA care such as palliative care, fertility, fatigue, and sexual health. Surveys were completed by 13/16 (81%) pediatric sites and 19/23 (83%) adult sites. Only about half of pediatric sites (n = 8/13) and adult sites (n = 9/19) who responded reported offering any AYA-specific cancer services or programming. One third of centres without programming reported to be working on developing programming. Only 6 sites reported to offer specialized AYA training. Several barriers were reported, such as the need for collaboration among institutions and improvement of oncofertility services. Significant disparities exist regarding geographic availability of services, the range of services available, and the populations served. Findings will guide researchers, health professionals, and provincial health authorities in the development of highquality and equitable services and programs for AYAs diagnosed with cancer across Canada.
Recipients and caregivers of Hematopoietic Stem Cell Transplant (HCT) have extensive physical and psychosocial needs. HCT programs recognize the need to support psychosocial wellbeing. However, evidence-based guidance for pre-HCT psychosocial services is sparse. We conducted a qualitative environmental scan of programs across Canada to better understand how programs evaluate and support patients and caregivers prior to HCT. Methods: HCT programs across Canada were contacted with a list of questions about their psychosocial assessment and preparation process with patients and caregivers. They could respond via email or participate in an interview over the phone. Descriptive qualitative content analysis was conducted, using steps outlined by Vaismoradi and colleagues (2013). Results: Most participants were social workers from hospitals (64%). Four qualitative themes arose: (a) Psychosocial Team Composition. Psychosocial assessment for HCT patients was often provided by social workers, with limited availability of psychologists and psychiatrists. (b) Criteria for assessing select HCT patients. Participants prioritized psychosocial assessments for patients with higher perceived psychosocial needs or risk, and/or according to transplant type. Limited time and high psychosocial staff demands also played into decision-making. (c) Components and Practices of Pre-HCT Psychosocial Assessment. Common components and differences of assessments were identified, as well as a lack of standardized tools. (d) Patient Education Sessions. Many sites provided adjunct patient education sessions, of varying depth. Conclusion: Significant variation exists in the way programs across the country assess their patients’ psychosocial pre-transplant needs and assist in preparing patients for the psychosocial aspects of HCT. This environmental scan identified several strategies used in diverse ways. Further in-depth research on program outcomes across Canada could help to identify which strategies are the most successful.