Camilla Palmhøj Nielsen

Stroke patients’ and informal carers’ experiences with life after stroke: an overview of qualitative systematic reviews

Abstract Purpose To provide a systematic overview of current qualitative systematic reviews and metasyntheses of patients’ and informal carers’ experiences with rehabilitation and life after stroke following discharge. Method A systematic literature search was performed based on PRISMA guidelines. Nine databases were systematically searched by a university librarian. The search yielded 1093 unique entries and screening by title/abstract identified 60 reviews for potential inclusion. After full-text assessment by two independent observers, 11 reviews satisfied the inclusion criteria. Following quality appraisal, four studies were excluded. Results Seven qualitative reviews (containing 108 primary studies) were included: five reviews of patients’ experiences and two reviews of carers’ experiences. Stroke causes profound disruption of life as known, and both patients and carers must engage in a process of adapting and rebuilding a post-stroke life and identity. This process of rehabilitation is described as temperamental and unstable rather than progressive. From the reviews, five key experiences in this process are identified: autonomy, uncertainty, engagement, hope and social relations. Conclusions The need for broad, qualitative syntheses of stroke patients’ experiences is currently fulfilled. Future qualitative reviews could focus more on implications for practice, e.g., by grading the quality of the metafindings. Implications for Rehabilitation Stroke is a profound disruption of life as known, and patients and carers value information that helps them prepare for and adjust to this new situation. Optimal rehabilitation is a main concern and goal for patients and carers, and thus carers may be a valuable asset to professionals in the rehabilitation process. Practical and emotional support is important for patients and carers, and rehabilitation professionals should be aware of the increased risk of social isolation post-stroke. Hope is a strong motivational factor and coping strategy for patients and carers. However, as hope may wane in the case of continued residual impairment, rehabilitation professionals should prepare patients and carers for this situation.

Does screening for Down's syndrome cause anxiety in pregnant women? A systematic review

Prenatal screening for Downs syndrome and other chromosomal abnormalities is included in prenatal care programs in many countries. However, the potential association between prenatal screening and maternal anxiety remains an issue of debate.

Coping with worry while waiting for diagnostic results: a qualitative study of the experiences of pregnant couples following a high-risk prenatal screening result

BackgroundIt is well documented that pregnant women experience increased worry and uncertainty following a high-risk prenatal screening result. While waiting for diagnostic results this worry continues to linger. It has been suggested that high-risk women put the pregnancy mentally ‘on hold’ during this period, however, not enough is known about how high-risk women and their partners cope while waiting for diagnostic results. The aim of this study was to identify the strategies employed to cope with worry and uncertainty.MethodsQualitative, semi-structured interviews with 16 high-risk couples who underwent diagnostic testing. The couples were recruited at a university hospital fetal medicine unit in Denmark. Data were analysed using thematic analysis.ResultsAll couples reported feeling worried and sad upon receiving a high-risk screening result. While waiting for diagnostic results, the couples focused on coming to their own understanding of the situation and employed both social withdrawal and social engagement as strategies to prevent worry from escalating. Additionally, couples used gratitude, reassuring reasoning and selective memory as means to maintain hopes for a good outcome. Discussions about what to do in case of an abnormal test result were notably absent in the accounts of waiting. This bracketing of the potential abnormal result allowed the couples to hold on to a ‘normal’ pregnancy and to employ an ‘innocent-till-proven-guilty’ approach to their worries about the fetus’s health. None of the interviewed couples regretted having prenatal screening and all of them expected to have prenatal screening in a future pregnancy.ConclusionsThe couples in this study did not put the pregnancy mentally ‘on hold’. Worry and uncertainty must be understood as managed through a diverse range of practical and emotional strategies that change and overlap in the process of waiting. Clinicians may support appropriate ways of coping with worry and waiting through empathetic and empowering clinical communication. In addition to providing adequate information and presenting options available, clinicians may support high-risk women/couples by encouraging them to seek their own personal understandings and management strategies as a way to gain some control in an uncertain situation.

Experiences and expectations in the first trimester of pregnancy: a qualitative study

A dominant context for pregnant women in the Western world is medical technologies such as ultrasound and screening. It has been argued that such technologies may result in tentative pregnancies, which may be particularly prominent in the first trimester. However, little is known about how women experience early pregnancy.

‘What do you think?’ the collaborative practices of choice and care in a Danish obstetric ultrasound unit.

ABSTRACT This paper is based on ethnographic fieldwork at an obstetric ultrasound unit in Denmark and explores the few, intense minutes of clinical interaction following a high-risk screening result for Downs syndrome. The category of high-risk transforms the routine ultrasound into a situation of inescapable choice, where the health of the foetus is questioned and decisions must be made. The clinical interactions following a high-risk result are investigated as processes of production, and the concepts of logic of choice and the logic of care are employed as analytical tools for identifying different rationales at play in the situation. The analysis shows that sonographers and women/couples collaboratively engage in logics of choice and care. Their mutual aim is to make the high-risk results meaningful and manageable so that a decision can be made. In this process initiative is shifted back and forth. Through a logic of care, complexity is reduced and statistics transformed by emphasising certain interpretations and leaving others unspoken. However, the logic of choice is also collectively maintained by positioning the women/couples as decision-makers. It is argued that in the obstetric ultrasound unit, the logic of choice provides a powerful frame, with the logic of care filling in the gaps and discontinuities to facilitate decisions. In this context, the logics are complementary rather than competing, and thus the analysis add new perspectives to the original concepts. In sum, the logics of choice and care provide a valuable analytical tool for interpreting and understanding the complex and collaborative practices of clinical interaction.

Termination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision‐making process of pregnant couples

In Denmark, first trimester screening has a very high uptake (>90%). If Down syndrome is diagnosed, termination rates are high (>95%). The aim of this study was to investigate the timing of the decision to terminate pregnancy following a diagnosis of Down syndrome and the factors influencing this decision.