Explore the vast range of titles available.

Background Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

Virtual follow-up (VFU) has the potential to enhance cancer survivorship care. However, a greater understanding is needed of how VFU can be optimized. This study aims to examine how, for whom, and in what contexts VFU works for cancer survivorship care. We conducted a realist evaluation of VFU among patients with breast cancer and prostate cancer at an urban cancer center during the COVID-19 pandemic. Realist evaluations examine how underlying causal processes of an intervention (mechanisms) in specific circumstances (contexts) interact to produce results (outcomes). Semistructured interviews were conducted with a purposive sample of patients ≤5 years after diagnosis. Interviews were audio-recorded and analyzed using a realist logic of analysis. Participants (N=24; n=12, 50% with breast cancer and n=12, 50% with prostate cancer) had an average age of 59.6 (SD 10.7) years. Most participants (20/24, 83%) were satisfied with VFU and wanted VFU options to continue after the COVID-19 pandemic. However, VFU impacted patient perceptions of the quality of their care, particularly in terms of its effectiveness and patient centeredness. Whether VFU worked well for patients depended on patient factors (eg, needs, psychosocial well-being, and technological competence), care provider factors (eg, socioemotional behaviors and technological competence), and virtual care system factors (eg, modality, functionality, usability, virtual process of care, and communication workflows). Key mechanisms that interacted with contexts to produce positive outcomes (eg, satisfaction) were visual cues, effective and empathetic communication, and a trusting relationship with their provider. Patients value VFU; however, VFU is not working as well as it could for patients. To optimize VFU, it is critical to consider contexts and mechanisms that impact patient perceptions of the patient centeredness and effectiveness of their care. Offering patients the choice of in-person, telephone, or video visits when possible, coupled with streamlined access to in-person care when required, is important. Prioritizing and addressing patient needs; enhancing physician virtual socioemotional behaviors and technology competency; and enhancing VFU functionality, usability, and processes of care and communication workflows will improve patient perceptions of the patient centeredness and effectiveness of virtual care.

Background There is a growing recognition of sex and gender influences in autism. Increasingly, studies include comparisons between sexes or genders, but few have focused on clarifying the characteristics of autistic girls’/women’s physical health. Methods A scoping review was conducted to determine what is currently known about the physical health of autistic girls/women. We screened 1112 unique articles, with 40 studies meeting the inclusion criteria. We used a convergent iterative process to synthesize this content into broad thematic areas. Results Autistic girls/women experience more overall physical health challenges compared to non-autistic girls/women and to autistic boys/men. Emerging evidence suggests increased prevalence of epilepsy in autistic girls/women compared to non-autistic girls/women and to autistic boys/men. The literature also suggests increased endocrine and reproductive health conditions in autistic girls/women compared to non-autistic girls/women. Findings regarding gastrointestinal, metabolic, nutritional, and immune-related conditions are preliminary and inconsistent. Limitations The literature has substantial heterogeneity in how physical health conditions were assessed and reported. Further, our explicit focus on physical health may have constrained the ability to examine interactions between mental and physical health. The widely differing research aims and methodologies make it difficult to reach definitive conclusions. Nevertheless, in keeping with the goals of a scoping review, we were able to identify key themes to guide future research. Conclusions The emerging literature suggests that autistic girls/women have heightened rates of physical health challenges compared to non-autistic girls/women and to autistic boys/men. Clinicians should seek to provide holistic care that includes a focus on physical health and develop a women’s health lens when providing clinical care to autistic girls/women.

IntroductionConsiderable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes.Methods and analysisGuided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson’s five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes.Ethics and disseminationThe use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users.PROSPERO registration numberCRD42021250046.