Background There are increasing expectations for researchers and knowledge users in the health system to use a research partnership approach, such as integrated knowledge translation, to increase the relevance and use of research findings in health practice, programmes and policies. However, little is known about how health research trainees engage in research partnership approaches such as IKT. In response, the purpose of this scoping review was to map and characterize the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees in thesis and/or postdoctoral work. Methods We conducted this scoping review following the Joanna Briggs Institute methodology and Arksey and O’Malley’s framework. We searched the following databases in June 2020: MEDLINE, Embase, CINAHL and PsycINFO. We also searched sources of unpublished studies and grey literature. We reported our findings in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Results We included 74 records that described trainees’ experiences using an IKT or other research partnership approach to health research. The majority of studies involved collaboration with knowledge users in the research question development, recruitment and data collection stages of the research process. Intersecting barriers to IKT or other research partnerships at the individual, interpersonal and organizational levels were reported, including lack of skills in partnership research, competing priorities and trainees’ “outsider” status. We also identified studies that evaluated their IKT approach and reported impacts on partnership formation, such as valuing different perspectives, and enhanced relevance of research. Conclusion Our review provides insights for trainees interested in IKT or other research partnership approaches and offers guidance on how to apply an IKT approach to their research. The review findings can serve as a basis for future reviews and primary research focused on IKT principles, strategies and evaluation. The findings can also inform IKT training efforts such as guideline development and academic programme development.
Perinatal mental health issues are a global public health challenge. Worldwide, it is estimated that 10% of pregnant women, and 13% of women who have just given birth, experience a mental disorder. Yet, for many reasons – including stigma, limited access to services, patients’ lack of awareness about symptoms, and inadequate professional intervention – actual rates of clinical and subclinical perinatal mental health issues are likely higher. Studies have explored experiences such as postpartum depression, but few involve a wider‐ranging exploration of a variety of self‐reported perinatal mental health issues through personal narrative. We conducted 21 narrative interviews with women, in two Canadian provinces, about their experiences of perinatal mental health issues. Our aim was to deepen understanding of how individual and cultural narratives of motherhood and perinatal mental health can be sources of shame, guilt, and suffering, but also spaces for healing and recovery. We identified four predominant themes in women’s narrative: feeling like a failed mother; societal silencing of negative experiences of motherhood; coming to terms with a new sense of self; and finding solace in shared experiences. These findings are consistent with other studies that highlight the personal challenges associated with perinatal mental health issues, particularly the dread of facing societal norms of the ‘good mother’. We also highlight the positive potential for healing and self‐care through sharing experiences, and the power of narratives to help shape feelings of self‐worth and a new identity. This study adheres to the expectations for conducting and reporting qualitative research.
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.
Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs-often due to the negative consequences of caregiving. Learning about the diversity of others' experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others' experiences. We collected the narratives of caregivers' experiences of caring for someone with a chronic physical illness and produced an evidence-based web resource. Through purposive variation sampling, 42 caregivers were recruited across Canada for interviews in their homes or alternate location using video/audio recording. Qualitative data analysis followed a constant comparison approach. 29 thematic pages were developed for the web site (www.healthexperiences.ca) featuring the diversity of lived experiences, and presenting topics important to the caregivers with illustrative video/audio clips, along with other sources of information. Key themes related to caregivers' perspectives on the negative consequences of caregiving included: the impact upon personal health; challenging interactions with professionals; inconsistent information, limited support from family and friends, and unhelpful societal views. These results contribute to existing evidence of caregiver burden, but uniquely in the voices of caregivers themselves-with constructive insights for understanding the causes of ill health related to caregiving burden and for informing policy and practice.
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