Our findings contribute to knowledge of how the structural context of formal services shapes carer experiences and outcomes. To promote equity and prevent burden, system navigation work should be considered as a public, structural issue, rather than an individual-level problem of skills and learning.
Health and social science researchers are increasingly interested in the range of new possibilities and benefits associated with diary methods, particularly using digital devices. In this article, we explore how a flexible diary method, which enables participants to choose the device (i.e., paper notebook, tablet, or computer) and medium (i.e., text, photographs, sketches) through which they narrate their experiences, can be used to promote sensitive and rigorous research engagement with family carers to people with dementia. We used a diary interview method with 10 carers over the course of 6 weeks to explore how they experience and interpret the changing behaviors of their cognitively impaired kin. We reflect on how the quality of diary data can be enhanced alongside the ethical dimensions of research with carer populations, through different forms of diary keeping, regular interaction with participants, reflexive practice, and follow-up interviews.
One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.
Many countries adopted comprehensive national initiatives to promote equity in higher education with the goal of transforming the culture of research. Major health research funders are supporting this work through calls for projects that focus on equity, resulting in a proliferation of theoretical frameworks including “intersectionality,” “health equity,” and variations of equity, diversity and inclusion, or EDI. This commentary is geared at individual principal investigators and health research teams who are developing research proposals and want to consider equity issues in their research, perhaps for the first time. We present histories and definitions of three commonly used frameworks: intersectionality, health equity, and EDI. In the context of health research, intersectionality is a methodology (a combination of epistemology and techniques) that can identify the relationships among individual identities and systems of oppression; however, it should also be used internally by research teams to reflect on the production of knowledge. Health equity is a societal goal that operationalizes the social determinants of health to document and address health disparities at the population level. EDI initiatives measure and track progress within organizations or teams and are best suited to inform the infrastructure and human resourcing “behind the scenes” of a project. We encourage researchers to consider these definitions and strive to tangibly move health research towards equity both in the topics we study and in the ways we do research.
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