Qualitative health research
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Biography Historical Article
Remembering Phyllis Noerager Stern, 1925-2014.
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We consider the work of research ethics boards and funding models for research that at times are incompatible with the relationship building required for feminist participatory action research with a disability community. We explore the barriers that emerged for university- and community-based partners as they asserted individual and collective identities, and negotiated boundaries, access, and power relations in the process of designing and conducting research. This critical reflection contributes to our understanding of the structures of academic research funding, ethics approval, and how problematic conceptualizations of vulnerability embedded in the Tri-Council Policy Statement and research ethics board practices impact on relationship building and the research process. Recommendations for change will be helpful to researchers studying disability, those using participatory action research, and individuals serving on ethics review boards.
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Researchers have explored perceptions of health care services among people with amyotrophic lateral sclerosis (ALS), but little is known about how and why people with ALS engage with services. We undertook a grounded theory study to identify key psychosocial processes that underpin how and why people with ALS engage with health care services. We conducted in-depth interviews with 34 participants sampled from the Irish ALS population-based register. ⋯ Participants in later life were more accepting of ALS and of death than young and middle-aged participants. Family was the primary context to how participants engaged with services, and their decisions about care were shaped by parenthood at different life stages. Health care professionals need to be attuned to the impact of life-course trajectories and family relations on the decisions people with ALS make about their care.
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In this article we explore how nurse practitioners, physician assistants, and nurse midwives in California (collectively referred to as clinicians) developed confidence while learning to provide vacuum aspiration abortion. We interviewed clinicians (n = 30) who worked in reproductive health care settings and had participated in a large abortion-training study. ⋯ Understanding the diverse ways in which clinicians arrive at confidence might inform health care training and education generally. By examining attained competency from the clinicians' perspectives, we continue the discussion within the social science of health care and medicine about how clinicians know what they know and what expertise feels like to them.
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Previous research investigating the psychosocial and psychosexual impact of living with the complex genitourinary condition bladder exstrophy has been limited in scope and methodological quality. However, the limited evidence suggests that people with bladder exstrophy commonly encounter difficulties that might negatively impact their experiences of intimacy. We conducted an interpretative phenomenological analysis to explore intimacy in 6 participants aged 16 to 56 years. ⋯ This concealment was associated with feeling safe and protected, yet shameful. Participants also discussed developing intimate knowledge of their own emerging identity while developing intimacy with others, as well as the importance of sharing the experience of bladder exstrophy with others in the development of intimate relationships. We discuss the findings in relation to theoretical issues of concealment, shame, attachment, psychosocial development, intimacy, and chronic illness.