People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications.

BACKGROUND: People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities. METHODS: This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes. RESULTS: 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified. CONCLUSION: Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants' experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.

Simulating the healthcare workforce impact and capacity for pancreatic cancer care in Victoria: a model-based analysis.

BACKGROUND: The incidence of pancreatic cancer is rising. With improvements in knowledge for screening and early detection, earlier detection of pancreatic cancer will continue to be more common. To support workforce planning, our aim is to perform a model-based analysis that simulates the potential impact on the healthcare workforce, assuming an earlier diagnosis of pancreatic cancer. METHODS: We developed a simulation model to estimate the demand (i.e. new cases of pancreatic cancer) and supply (i.e. the healthcare workforce including general surgeons, medical oncologists, radiation oncologists, pain medicine physicians, and palliative care physicians) between 2023 and 2027 in Victoria, Australia. The model compares the current scenario to one in which pancreatic cancer is diagnosed at an earlier stage. The incidence of pancreatic cancer in Victoria, five-year survival rates, and Victoria's population size were obtained from Victorian Cancer Registry, Cancer Council NSW, and Australian Bureau of Statistics respectively. The healthcare workforce data were sourced from the Australian Government Department of Health and Aged Care's Health Workforce Data. The model was constructed at the remoteness level. We analysed the new cases and the number of healthcare workforce by profession together to assess the impact on the healthcare workforce. RESULTS: In the status quo, over the next five years, there will be 198 to 220 stages I-II, 297 to 330 stage III, and 495 to 550 stage IV pancreatic cancer cases diagnosed annually, respectively. Assuming 20-70% of the shift towards pancreatic cancer's earlier diagnosis (shifting from stage IV to stages I-II pancreatic cancer within one year), the stages I-II cases could increase to 351 to 390 or 598 to 665 per year. The shift to early diagnosis led to substantial survival gains, translating into an additional 284 or 795 out of 5246 patients with pancreatic cancer remaining alive up to year 5 post-diagnosis. Workforce supply decreases significantly by the remoteness levels, and remote areas face a shortage of key medical professionals registered in delivering pancreatic cancer care, suggesting travel necessities by patients or clinicians. CONCLUSION: Improving the early detection and diagnosis of pancreatic cancer is expected to bring significant survival benefits, although there are workforce distribution imbalances in Victoria that may affect the ability to achieve the anticipated survival gain.

Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes.

OBJECTIVE: Although the benefits of consumer involvement in research and healthcare initiatives are known, there is a need to optimise this for all people with cancer. This systematic review aimed to synthesise and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy. METHODS: A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase and PsycINFO databases and included studies focused on two concepts, co-design and oncology. RESULTS: A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach and 14% used no framework. Reporting was poor for participant level of involvement, the frequency and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%). CONCLUSIONS: There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide i) methodology and frameworks, ii) recruitment and engagement of co-design participants, and iii) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.

The digital divide in rural and regional communities: a survey on the use of digital health technology and implications for supporting technology use.

OBJECTIVE: A digital divide exists for people from rural and regional areas where they are less likely and confident to engage in digital health technologies. The aim of this study was to evaluate the digital health literacy and engagement of people from rural and regional communities, with a focus on identifying barriers and facilitators to using technology. RESULTS: Forty adults living in rural/regional areas completed a survey consisting of the eHealth Literacy Scale (eHEALS) with additional items surveying participants' experience with a range of digital health technologies. All participants had used at least one digital health technology. Most (80%) participants had an eHEALS score of 26 or above indicating confidence in online health information. Commonly reported barriers to digital health technology use centred on product complexity and reliability, awareness of resources, lack of trust, and cost. Effective digital health technology use is becoming increasingly important, there may be a need to prioritise and support people with lower levels of digital health literacy. We present opportunities to support community members in using and accessing digital health technology.

Supportive interventions for carers of men with prostate cancer: systematic review and narrative synthesis.

PURPOSE: The objective of this study was to summarise the literature on current interventions available for carers of men with prostate cancer and analyse the outcomes of these interventions in supporting carers' needs. METHODS: A systematic review was conducted, searching databases MEDLINE, PsycINFO, CINAHL, Scopus and Cochrane, using terms related to prostate cancer, carers and interventions. Randomised controlled trials and non-randomised controlled trials of interventions for informal carers with or without patients were included. Data were analysed using descriptive and frequency statistics; interventions and their impact on carers' outcomes were reported on narratively. The SwiM guidelines were applied to guide data synthesis. RESULTS: Overall, 24 articles were included in the review. On average, participants were spouses (92%) and women (97%). Interventions largely rwere delivered face-to-face (42%) or used a combination of face to face and online modalities (38%). Two-thirds (63%) showed a significant improvement in carer's outcomes including psychological, sexual, physical and relationship/marital. The majority of studies (79%) tailored contents to carers' circumstances, most within a couples counselling format. Over one-third (42%) of studies focused on a range of supportive care needs, most commonly were psychological (58%), sexual (42%) and informational (25%). CONCLUSIONS: Interventions for carers of men with prostate cancer were largely face to face, patient-spouse focused and two-thirds had some measurable impact on carer's outcomes. Research continues to underserve other patient-carer roles, including non-spousal carers. Interventions delivered solely for carers are required to meet gaps in care, and determine the impact on carer outcomes. Further research and more targeted interventions are needed. PROSPERO REGISTRATION NUMBER: CRD42021249870.

Overcoming challenges in conducting systematic reviews in implementation science: a methods commentary.

Consolidation of the literature using systematic reviews is a critical way to advance a discipline and support evidence-based decision-making in healthcare. However, unique challenges exist that impact the conduct of systematic reviews in implementation science. In this commentary, we reflect on our combined experience to describe five key challenges unique to systematic reviews of primary implementation research. These challenges include (1) descriptors used in implementation science publications, (2) distinction between evidence-based interventions and implementation strategies, (3) assessment of external validity, (4) synthesis of implementation studies with substantial clinical and methodological diversity, and (5) variability in defining implementation 'success'. We outline possible solutions and highlight resources that can be used by authors of primary implementation research, as well as systematic review and editorial teams, to overcome the identified challenges and optimise the utility of future systematic reviews in implementation science.

Designing Supportive e-Interventions for Partners of Men With Prostate Cancer Using Female Partners' Experiences: Qualitative Exploration Study.

BACKGROUND: Partners of men living with prostate cancer (PCa) can experience a variety of unmet needs that are largely unaddressed by health care professionals. There is limited evidence to suggest which approach may be most effective in supporting partners' unmet needs and further research is required to determine how to provide support to caregivers and how technology solutions can be designed. OBJECTIVE: This study aims to explore the experience of partners of men living with PCa and their perceptions of the potential role of information technology in supporting their needs. METHODS: A qualitative descriptive methodology using focus groups and phone interviews was used. Purposive sampling was used to recruit people attending a national conference supported by a national PCa organization. Interview guides were adapted from an existing evidence-based smartphone app for caregivers of people with colorectal cancer. Sessions were audio recorded and transcribed verbatim. A coding framework was developed, and transcripts were coded line by line into the framework. Codes within the framework were grouped into descriptive categories that were then developed into analytical themes. RESULTS: A total of 17 female partners participated in the study, with an average age of 64 (SD 8.5) years. The following two main themes emerged: In the first theme, that is, How technology can be shaped to support female partners of prostate cancer survivors, the content and design of the smartphone app was discussed in addressing female partners' needs. The following four subthemes were developed: getting support from social networks and resources, the lack of relevant information, demystifying future care expectations during and following a PCa diagnosis, and delivering the smartphone app-to whom and from whom. In the second theme, that is, The benefits and barriers of technology, the suitability of smartphone apps as a supportive modality for female partners was described. This included three subthemes: the smartphone app as an appropriate modality for supporting female partners, the future anticipated benefits of using the smartphone app, and concerns for storing and accessing information on the internet. CONCLUSIONS: A smartphone app may be a suitable modality for providing information and peer support to female partners of men living with PCa. There is a need to provide peer support for female partners in future interventions to ensure that female partners' intimacy and daily practical needs are met.

Effective integration of caregivers and families as part of the care team for people with cancer.

BACKGROUND: Informal caregivers (family or friends of people with cancer) are a group of highly important people who support those diagnosed with cancer to remain at home and out of hospital, but this comes at a significant personal cost. Understanding strategies to support cancer caregivers is critical. OBJECTIVE: This article will present an overview of cancer caregiving and how the caregivers involved can be assisted by general practitioners (GPs). Two key approaches to general practice teams supporting caregivers will be explored: acknowledging and integrating caregivers as part of the care team and providing referrals into services and supports. DISCUSSION: The general practice team is ideally positioned to assist in the support of cancer caregivers. GPs can assist caregivers by acknowledging them as valid and important members of the care team and referring them into existing support programs. These strategies are central to supporting this important, but often forgotten, group of people affected by cancer.