MRI for Fetal Developmental Brain Abnormalities: Perspectives From the Pregnant Patient.

Ultrasound is routinely used as a prenatal screening and diagnostic tool but has limitations. Some anomalies in the developing fetal brain can be difficult to detect, and in utero magnetic resonance imaging (iuMRI) is increasingly used as an adjunct to ultrasound. However, understandings of patient perspectives of iuMRI technology are still developing. Our qualitative study of 41 mothers who experienced iuMRI was embedded in a diagnostic accuracy trial and aimed to inform policy recommendations that might stem from the clinical findings. Our analysis suggests that iuMRI is seen as useful, offering valuable additional information and helping women make decisions about care options at a difficult time. However, patients' experiences demonstrated the uncertainty and anxiety associated with the prenatal diagnosis (PND) process relating to brain anomalies including the challenges of their embodied contributions. Our findings suggest more could be done to reduce the impact on pregnant women during an already difficult, anxious period.

Health state descriptions to elicit stroke values: do they reflect patient experience of stroke?

BACKGROUND: To explore whether stroke health state descriptions used in preference elicitation studies reflect patients' experiences by comparing published descriptions with qualitative studies exploring patients' lived experience. METHODS: Two literature reviews were conducted: on stroke health state descriptions used in direct preference elicitation studies and the qualitative literature on patients' stroke experience. Content and comparative thematic analysis was used to identify characteristics of stroke experience in both types of study which were further mapped onto health related quality of life (HRQOL) domains relevant to stroke. Two authors reviewed the coded text, categories and domains. RESULTS: We included 35 studies: seven direct preference elicitation studies and 28 qualitative studies on patients' experience. Fifteen coded categories were identified in the published health state descriptions and 29 in the qualitative studies. When mapped onto domains related to HRQOL, qualitative studies included a wider range of categories in every domain that were relevant to the patients' experience than health state descriptions. CONCLUSIONS: Variation exists in the content of health state descriptions for all levels of stroke severity, most critically with a major disjuncture between the content of descriptions and how stroke is experienced by patients. There is no systematic method for constructing the content/scope of health state descriptions for stroke, and the patient perspective is not incorporated, producing descriptions with major deficits in reflecting the lived experience of stroke, and raising serious questions about the values derived from such descriptions and conclusions based on these values.

Experiences of abortion: a narrative review of qualitative studies.

BACKGROUND: Although abortion or termination of pregnancy (TOP) has become an increasingly normalized component of women's health care over the past forty years, insufficient attention has been paid to women's experiences of surgical or medical methods of TOP. OBJECTIVE: To undertake a narrative review of qualitative studies of women's experiences of TOP and their perspectives on surgical or medical methods. METHODS: Keyword searches of Medline, CINAHL, ISI, and IBSS databases. Manual searches of other relevant journals and reference lists of primary articles. RESULTS: Qualitative studies (n = 18) on women's experiences of abortion were identified. Analysis of the results of studies reviewed revealed three main themes: experiential factors that promote or inhibit the choice to seek TOP; experiences of TOP; and experiential aspects of the environment in which TOP takes place. CONCLUSION: Women's choices about TOP are mainly pragmatic ones that are related to negotiating finite personal and family and emotional resources. Women who are well informed and supported in their choices experience good psychosocial outcomes from TOP. Home TOP using mifepristone appears attractive to women who are concerned about professionals' negative attitudes and lack of privacy in formal healthcare settings but also leads to concerns about management and safety.

Situationally-sensitive knowledge translation and relational decision making in hyperacute stroke: a qualitative study.

Stroke is a leading cause of disability. Early treatment of acute ischaemic stroke with rtPA reduces the risk of longer term dependency but carries an increased risk of causing immediate bleeding complications. To understand the challenges of knowledge translation and decision making about treatment with rtPA in hyperacute stroke and hence to inform development of appropriate decision support we interviewed patients, their family and health professionals. The emergency setting and the symptomatic effects of hyper-acute stroke shaped the form, content and manner of knowledge translation to support decision making. Decision making about rtPA in hyperacute stroke presented three conundrums for patients, family and clinicians. 1) How to allow time for reflection in a severely time-limited setting. 2) How to facilitate knowledge translation regarding important treatment risks and benefits when patient and family capacity is blunted by the effects and shock of stroke. 3) How to ensure patient and family views are taken into account when the situation produces reliance on the expertise of clinicians. Strategies adopted to meet these conundrums were fourfold: face to face communication; shaping decisions; incremental provision of information; and communication tailored to the individual patient. Relational forms of interaction were understood to engender trust and allay anxiety. Shaping decisions with patients was understood as an expression of confidence by clinicians that helped alleviate anxiety and offered hope and reassurance to patients and their family experiencing the shock of the stroke event. Neutral presentations of information and treatment options promoted uncertainty and contributed to anxiety. 'Drip feeding' information created moments for reflection: clinicians literally made time. Tailoring information to the particular patient and family situation allowed clinicians to account for social and emotional contexts. The principal responses to the challenges of decision making about rtPA in hyperacute stroke were relational decision support and situationally-sensitive knowledge translation.