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PurposeTo generate direct observational evidence for understanding how diet, nutrition, and weight-related topics are discussed during follow-up after treatment for gynecological cancer, as recommended by survivorship care guidelines.MethodsConversation analysis of 30 audio-recorded outpatient consultations, involving 4 gyne-oncologists, 30 women who had completed treatment for ovarian or endometrial cancer, and 11 family members/friends.ResultsFrom 21 instances in 18 consultations, diet, nutrition, or weight-related talk continued beyond initiation if the issue raised was ostensibly relevant to the clinical activity being undertaken at the time. These instances led to care-related outcomes (i.e., general dietary recommendations, referral to support, behavior change counseling) only when the patient identified needing further support. Diet, nutrition, or weight-related talk was not continued by the clinician if it was not apparently related to the current clinical activity.ConclusionsThe continuation of diet, nutrition, or weight-related talk during outpatient consultations after treatment for gynecological cancer, and the subsequent delivery of care-related outcomes, depends on its immediate clinical relevance and the patient indicating needing further support. The contingent nature of these discussions means there can be missed opportunities for the provision of dietary information and support post-treatment.Implications for Cancer SurvivorsIf seeking information or support for diet, nutrition, or weight-related issues post-treatment, cancer survivors may need to be explicit regarding their need for this during outpatient follow-up. Additional avenues for dietary needs assessment and referral should be considered to optimize the consistent delivery of diet, nutrition, and weight-related information and support after treatment for gynecological cancer.

This study formed the development stage of a population-based survey aiming to: (i) understand the needs and experiences of people affected by cancer in Queensland, Australia and (ii) recruit a pool of participants for ongoing cancer survivorship research. The current study aimed to co-design and test a single qualitative survey question and study invitation materials to maximise acceptability of, and participation in, the survey and future research. Fifty-two community members, including cancer survivors and caregivers, participated across 15 co-design workshops and 20 pretest interviews. During workshops, participants generated and refined ideas for an open-ended survey question and provided feedback on a study invitation letter. The use of a single, open-ended question aims to minimise participant burden while collecting rich information about needs and experiences. The research team then shortlisted the question ideas and revised study invitation materials based on workshop feedback. Next, using interviews, community members were asked to respond to a shortlisted question to test its interpretability and relevance and to review revised invitation materials. Content analysis of participant feedback was used to identify principles for designing study materials. Principles for designing qualitative survey questions were identified from participant feedback, including define the question timeframe and scope; provide reassurance that responses are valid and valued; and use simple wording. Principles for designing study invitation materials were also identified, including communicate empathy and sensitivity; facilitate reciprocal benefit; and include a 'human element'. The qualitative survey question and study invitation materials created using these principles were considered relevant and acceptable for use in a population-based survey. Through community consultation and co-design, this study identified principles for designing qualitative data collection and invitation materials for use in cancer survivorship research. These principles can be applied by other researchers to develop study materials that are sensitive to the needs and preferences of community members.

Purpose Caring for someone with cancer has a significant impact on usual routines, including caregivers' ability to maintain their own health and wellbeing. Caregivers living in rural areas face additional challenges in supporting someone with cancer, and little is known about the impact of caregiving on the health behaviors of rural caregivers. Therefore, this study explored how caring for someone with cancer affected rural caregivers' health behaviors. Methods Through semi‐structured interviews, 20 rural caregivers described changes in their health behaviors while caring for someone with cancer and the factors underlying these changes. Specific prompts were provided for diet, physical activity, alcohol, smoking, sleep, social connection and leisure, and accessing health care when needed. Interviews were audio‐recorded and transcribed verbatim. Content analysis was used to identify changes in health behaviors and the factors underlying these changes. The factors identified were mapped to the socioecological framework, identifying areas for intervention across multiple levels (individual, interpersonal, organizational, community, and policy). Results Rural caregivers reported both positive and negative changes to their diet, physical activity, alcohol, and smoking. Sleep, social connection and leisure, and accessing health care were negatively impacted since becoming a caregiver. Conclusions Designing interventions to address rural caregivers' coping strategies, reduce carer burden and fatigue, improve access to cooking and exercise facilities and social support while away from home, reduce the need to travel for treatment, and increase the financial support available could yield widespread benefits for supporting the health and wellbeing of rural caregivers. This study examined changes in rural caregivers' health behaviors while caring for someone with cancer and the factors underlying these changes, through qualitative interviews. Rural caregivers reported both positive and negative changes to their diet, physical activity, alcohol, and smoking, while sleep, social connection and leisure, and accessing health care were negatively impacted since becoming a caregiver. Designing interventions to address rural caregivers' coping strategies, reduce carer burden and fatigue, improve access to cooking and exercise facilities and social support while away from home, reduce the need to travel for treatment, and increase the financial support available could yield widespread benefits for supporting the health and wellbeing of rural caregivers.

Aims To investigate rural cancer survivors' self‐reported reasons for perceived delays in initial cancer detection and treatment. Methods Within a cohort study, adult cancer survivors who had travelled > 50 km for cancer care, staying at subsidised accommodation lodges in city centres in Queensland, Australia, were invited to complete a structured interview on perceived delays in: (i) seeking medical attention, (ii) receiving their diagnosis and (iii) commencing treatment. Content analysis was used to map self‐reported reasons for perceived delays at each step, which were then categorised based on the perceived source: (i) personal, (ii) healthcare professional, (iii) healthcare system or (iv) other. The self‐reported reasons and perceived sources were summarised using descriptive statistics. Results Six hundred and eighty‐six rural cancer survivors completed the interview (18% breast, 15% head and neck, 12% prostate and 12% skin cancer). Almost half (n = 320, 47%) of participants perceived a delay at one or more steps. Delays in seeking medical attention were perceived by 132 (19%) participants, mostly related to personal factors (n = 67, 51%), including misinterpreting (n = 19, 28%) signs and symptoms. Delays in diagnosis were perceived by 161 (23%) participants, mostly related to healthcare professional factors (n = 86, 53%), including requiring further opinions or testing for diagnosis (n = 30, 35%). Delays in commencing treatment were perceived by 157 (23%) participants, mostly due to healthcare system factors (n = 57, 37%), including long waitlists (n = 39, 68%). Of the participants who perceived a delay in commencing treatment, comparison with timeframes recommended in the relevant Optimal Care Pathway identified that 57% of perceived delays were actual delays. Conclusions Perceived delays in the pathway to initial cancer detection and treatment are common among rural cancer survivors. Improvements in patient–clinician communication could reduce perceived delays, particularly in diagnosis and treatment. Promoting early help‐seeking, participation in cancer screening and improving access to diagnostic and treatment infrastructure may also improve care experiences.

Aims As more people live with and beyond a cancer diagnosis, the role of informal caregivers becomes increasingly vital. Despite emotional, physical, and financial challenges, the impact of caregiving on health behaviors, including diet, has been largely overlooked. This systematic review synthesized quantitative evidence on dietary quality and intake among cancer caregivers. Methods Five databases (CINAHL, Embase, PubMed, PsycINFO, Web of Science) were searched in February 2024 using keywords including cancer, caregiver, and diet. Articles published since 2013 that quantitatively assessed the dietary quality or intake of cancer caregivers were eligible. Articles were independently screened in Rayaan by two authors, with discrepancies resolved by a third author. Data on study design, aims, methods, sample characteristics, and results were extracted and summarized using descriptive analyses. One author performed data extraction, with a second author reviewing results for accuracy. Results Of 12,584 records identified, 22 met eligibility criteria. Most studies were conducted in the United States (68%), were cross‐sectional (77%), and included caregivers who were partners (68%) of people with cancer. Four (18%) studies reported on energy or nutrient intakes, 13 (59%) reported on food or food group intakes, and 10 (45%) reported on diet quality or dietary patterns. Results varied widely due to differences in assessment methods used. Dietary changes due to caregiving were described in 8 (36%) studies, mostly using retrospective self‐reported data. Negative, positive, and no dietary changes were reported in 7 (32%), 5 (23%), and 4 (18%) studies, respectively. Two (9%) studies did not specify the direction of change. Eight (36%) studies assessed adherence to dietary recommendations, with mixed results. Conclusions Evidence of the dietary quality and intake of cancer caregivers is inconclusive. Larger, longitudinal studies using validated measures, repeated observations, and comparison to dietary guidelines are needed to better understand the impacts of caregiving on diet. This systematic review synthesized current quantitative evidence on the dietary quality and intake of cancer caregivers. There is some evidence to suggest that caring for someone with cancer may negatively impact diet, though findings are largely inconclusive. Larger, longitudinal studies using validated measures, repeated observations, and comparison to individual or population‐based guidelines are needed to better understand the impacts of caregiving on diet.

Background Advancements in cancer treatment and survivorship rely on participation in research and access to health records. Methods This study explored preferences for data access and sharing in 14 workshops with 42 community members, most of whom were a cancer survivor or carer. Various scenarios for data access and sharing were presented and discussed, with participants' preferences summarized using descriptive statistics. Reasons underlying these preferences were identified through a thematic analysis of workshop transcripts. Results Most participants indicated a willingness for researchers to use their self‐report data and current health records for a specific research project (86%). Many were also willing for their self‐report data and current (62%) or all future (44%) health records to be shared with other researchers for use in other studies if made aware of this. Willingness to consent to data access and sharing data in cancer research was influenced by: (i) the potential for data sharing to advance medical discoveries and benefit people impacted by cancer in the future, (ii) transparency around researchers' credibility and their intentions for data sharing, (iii) level of ownership and control over data sharing, and (iv) protocols for privacy and confidentiality in data sharing. Conclusions Based on these themes, we present practical strategies for optimizing data access and sharing in cancer research. This qualitative study investigated community members' preferences for data sharing in cancer research. Findings indicate community support for improved data sharing in cancer research, provided that data sharing could advance medical discoveries and benefit others impacted by cancer in the future, researchers' intentions for data sharing are transparent and clear, participants maintain ownership and control over the types of data shared (e.g., future medical records), and privacy and confidentiality are assured. Based on the themes identified, we present practical strategies for optimizing data access and sharing in cancer research.

Purpose Caregivers provide vital support to people with cancer but often report feeling unsupported themselves. This study investigated rural caregivers’ experiences seeking support for their health and wellbeing while caring for someone with cancer. Methods Through semi-structured interviews, 20 rural caregivers described their experiences seeking and accessing support for their own health and wellbeing while caring for someone with cancer, including what support was, or would have been, helpful. Interview transcripts were analysed using content analysis to identify the type and source of support sought and what aspects of the support were helpful or unhelpful. Results Health and wellbeing support was sought across medical and psychosocial domains. Caregivers’ responses reflected both facilitators and barriers to support-seeking and benefits and challenges of accessing support. Facilitators to support-seeking included telehealth options and being involved in patient care discussions, as this helped caregivers know what to expect in their role. Barriers included social isolation while travelling for treatment and caregivers’ needs for support not being acknowledged or understood by medical staff or social networks. Benefits of accessing support included help with managing daily responsibilities and being linked with additional services. Challenges included delays in receiving support, inadequate duration of support, and lack of lived experience among care providers. Conclusions To optimise rural caregivers’ access to support for their health and wellbeing, support services should be prompt and flexible in delivery, simple to navigate, integrated with patient care, improve caregivers’ coping ability, provide access to additional supports, and reduce caregiver burden.

Rural cancer caregivers report poor wellbeing and high unmet needs for support. This study investigates sources of support sought by cancer caregivers living in rural Australia, and factors associated with support‐seeking. Informal caregivers of people with cancer completed a questionnaire assessing sociodemographic characteristics, caregiver factors and support‐seeking. Descriptive statistics, bivariate analyses and logistic regression were used to identify common sources of support and factors associated with support‐seeking. Alluvial and radar plots were used to identify and describe support‐seeking profiles. Of 244 rural caregivers, 64% reported seeking support for themselves, 72% for the cancer patient, and 22% did not seek any support. The most common sources of support were general practitioners and online. Higher caregiver burden, higher income, caring for someone with anxiety/depression or caring for someone who has difficulty completing their usual activities were associated with seeking support from a greater number of sources. The ‘No support‐seekers’ profile had the highest proportions of caregivers who were male, caring for someone <12 months post‐diagnosis and lower income earners. Many rural caregivers seek support for themselves and the cancer patient, commonly from medical and online sources. Further work may be needed to reduce caregiver burden and support caregivers who are male, caring for someone recently diagnosed, and those with lower incomes.

This study formed the development stage of a population-based survey aiming to: (i) understand the needs and experiences of people affected by cancer in Queensland, Australia and (ii) recruit a pool of participants for ongoing cancer survivorship research. The current study aimed to co-design and test a single qualitative survey question and study invitation materials to maximise acceptability of, and participation in, the survey and future research. Fifty-two community members, including cancer survivors and caregivers, participated across 15 co-design workshops and 20 pretest interviews. During workshops, participants generated and refined ideas for an open-ended survey question and provided feedback on a study invitation letter. The use of a single, open-ended question aims to minimise participant burden while collecting rich information about needs and experiences. The research team then shortlisted the question ideas and revised study invitation materials based on workshop feedback. Next, using interviews, community members were asked to respond to a shortlisted question to test its interpretability and relevance and to review revised invitation materials. Content analysis of participant feedback was used to identify principles for designing study materials. Principles for designing qualitative survey questions were identified from participant feedback, including define the question timeframe and scope; provide reassurance that responses are valid and valued; and use simple wording. Principles for designing study invitation materials were also identified, including communicate empathy and sensitivity; facilitate reciprocal benefit; and include a 'human element'. The qualitative survey question and study invitation materials created using these principles were considered relevant and acceptable for use in a population-based survey. Through community consultation and co-design, this study identified principles for designing qualitative data collection and invitation materials for use in cancer survivorship research. These principles can be applied by other researchers to develop study materials that are sensitive to the needs and preferences of community members.