ABSTRACT
PURPOSE: This study explored whether and how a sample of women made informed choices about prenatal testing for foetal anomalies; its aim was to provide insights for future health policy and service provision. METHODS: We conducted semi-structured interviews with 38 mothers in Ottawa, Ontario, all of whom had been offered prenatal tests in at least one pregnancy. Using the Multi-dimensional Measure of Informed Choice as a general guide to analysis, we explored themes relevant to informed choice, including values and knowledge, and interactions with health professionals. RESULTS: Many, but not all, participants seemed to have made informed decisions about prenatal testing. Values and knowledge were interrelated and important components of informed choice, but the way they were discussed differed from the way they have been presented in scientific literature. In particular, 'values' related to expressions of women's moral views or ideas about 'how life should be lived' and 'knowledge' related to the ways in which women prioritized and interpreted factual information, through their own and others' experiences and in 'thinking through' the personal implications of testing. While some women described non-directive discussions with health professionals, others perceived testing as routine or felt pressured to accept it. CONCLUSIONS: Our findings suggest a need for maternity care providers to be vigilant in promoting active decision making about prenatal testing, particularly around the consideration of personal implications. Further development of measures of informed choice may be necessary to fully evaluate decision support tools and to determine whether prenatal testing programmes are meeting their objectives.
Subject(s)
Choice Behavior , Health Knowledge, Attitudes, Practice , Informed Consent/statistics & numerical data , Patient Acceptance of Health Care/psychology , Pregnant Women/psychology , Prenatal Care , Prenatal Diagnosis/statistics & numerical data , Abortion, Eugenic , Adult , Diagnostic Tests, Routine , Female , Humans , Informed Consent/psychology , Middle Aged , Morals , Ontario , Patient Acceptance of Health Care/statistics & numerical data , Pregnancy , Pregnancy Trimesters , Prenatal Diagnosis/methods , Professional-Patient Relations , Qualitative Research , Risk Factors , Young AdultABSTRACT
This study examined themes relevant to health-related quality of life as identified by patients undergoing major surgery and by health care providers. Semi-structured interviews were conducted with 52 patients undergoing major abdominal, cardiac, orthopedic, thoracic, or vascular surgical procedures and 33 health professionals from various disciplines. A total of 58 themes were identified by content analysis. These themes were categorized into 6 domains. These were: physical well-being (14 themes), emotional well-being (13 themes), concern about quality of care (12 themes), social well-being (12 themes), cognitive preparation (4 themes), and spiritual well-being (3 themes). In general, we found that most aspects of health-related quality of life were common across various major surgical procedures and between patients and health care providers. However, when we examined the coverage of these themes in seven commonly-used health-related quality of life instruments, we found that many of the most frequently mentioned themes were not assessed with the available measures. A new evaluative instrument tailored to patients undergoing major surgery may therefore be warranted.
