Compulsory separation of women prisoners from their babies following childbirth: Uncertainty, loss and disenfranchised grief.

There is growing evidence to show increased mental ill health in women compulsorily separated from their babies at birth (Cantwell et al., MBRRACE-UK, 2018:56). For imprisoned women, the risk of self-harm and suicide may be exacerbated. This article draws on in-depth interviews with a sample of 28 imprisoned pregnant women/new mothers, 10 prison staff and observations to discuss the experience of separation from or anticipation of separation of women from their babies. Oakley (Signs, 4:607-631, 1980) reflected on the transition to motherhood with reference to the sociology of loss of identity. Women who have been compulsorily separated from their babies experience subjugated loss out of place with societal norms. The experiences of compulsory separation, in relation to concepts of disenfranchised grief, resonate with Lovell's (Social Science & Medicine, 17:755-761, 1983) research into the altered identities of mothers when loss occurs through late miscarriage or stillbirth. Additionally, this type of complex loss also denies a woman her identity as a 'mother'. This article offers a fresh sociological perspective on the ways loss and grief are experienced by women facing separation from their babies in prison, drawing on concepts of uncertainty, loss and disenfranchised grief.

Experiences of midwifery care in English prisons.

BACKGROUND: In the United Kingdom (UK), all prisoners must receive healthcare equivalent to that available in the community. However, evidence suggests that equality in healthcare provision for perinatal women in UK prisons is not always achieved. The aim of this research was to examine pregnant women prisoners' and custody staffs' experiences and perceptions of midwifery care in English prisons. METHODS: A qualitative approach based on institutional ethnography was used to research women's experiences in three English prisons over a period of 10 months. In total, 28 women participated in audio-recorded, semi-structured interviews. Ten staff members were interviewed, including six prison service staff and four health care personnel. Ten months of prison fieldwork enabled observations of everyday prison life. NVivo was used for data organization with an inductive thematic analysis method. RESULTS: Women's experiences included: disempowerment due to limited choice; fear of birthing alone; and a lack of information about rights, with a sense of not receiving entitlements. Some women reported favorably on the continuity of midwifery care provided. There was confusion around the statutory role of UK midwifery. DISCUSSION: Experiences of perinatal prisoners contrast starkly with best midwifery practice-women are unable to choose their care provider, their birth companions, or their place of birth. In addition, a reliance upon "good behavior" in return for appropriate treatment may be detrimental to the health, safety, and well-being of the pregnant woman and her unborn baby. CONCLUSION: Prison is an adverse environment for a pregnant woman. This study provides key insights into imprisoned women's experiences of midwifery care in England and shows that midwives play an essential role in ensuring that perinatal prisoners receive safe, high-quality, respectful care.

Challenges of Conducting Clinical Trials during the SARS-CoV-2 Pandemic: The ASCEND Global Program Experience.

The coronavirus disease 2019 pandemic has had an unprecedented effect on health and health care and posed challenges to the conduct of clinical trials.Targeted mitigating strategies, on the basis of early and continued data collection from site surveys, limited disruption to the ASCEND trials.Flexibly allowing hemoglobin assessment at local laboratories to inform randomized treatment dosing was key to limiting the discontinuation of treatment.

Patient Harm and Institutional Avoidability of Out-of-Hours Discharge From Intensive Care: An Analysis Using Mixed Methods.

OBJECTIVES: Out-of-hours discharge from ICU to the ward is associated with increased in-hospital mortality and ICU readmission. Little is known about why this occurs. We map the discharge process and describe the consequences of out-of-hours discharge to inform practice changes to reduce the impact of discharge at night. DESIGN: This study was part of the REcovery FoLlowing intensive CarE Treatment mixed methods study. We defined out-of-hours discharge as 16:00 to 07:59 hours. We undertook 20 in-depth case record reviews where in-hospital death after ICU discharge had been judged "probably avoidable" in previous retrospective structured judgment reviews, and 20 where patients survived. We conducted semistructured interviews with 55 patients, family members, and staff with experience of ICU discharge processes. These, along with a stakeholder focus group, informed ICU discharge process mapping using the human factors-based functional analysis resonance method. SETTING: Three U.K. National Health Service hospitals, chosen to represent different hospital settings. SUBJECTS: Patients discharged from ICU, their families, and staff involved in their care. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Out-of-hours discharge was common. Patients and staff described out-of-hours discharge as unsafe due to a reduction in staffing and skill mix at night. Patients discharged out-of-hours were commonly discharged prematurely, had inadequate handover, were physiologically unstable, and did not have deterioration recognized or escalated appropriately. We identified five interdependent function keys to facilitating timely ICU discharge: multidisciplinary team decision for discharge, patient prepared for discharge, bed meeting, bed manager allocation of beds, and ward bed made available. CONCLUSIONS: We identified significant limitations in out-of-hours care provision following overnight discharge from ICU. Transfer to the ward before 16:00 should be facilitated where possible. Our work highlights changes to help make day time discharge more likely. Where discharge after 16:00 is unavoidable, support systems should be implemented to ensure the safety of patients discharged from ICU at night.

Pregnancy and childbirth in English prisons: institutional ignominy and the pains of imprisonment.

With a prison population of approximately 9000 women in England, it is estimated that approximately 600 pregnancies and 100 births occur annually. Despite an extensive literature on the sociology of reproduction, pregnancy and childbirth among women prisoners is under-researched. This article reports an ethnographic study in three English prisons undertaken in 2015-2016, including interviews with 22 prisoners, six women released from prison and 10 staff members. Pregnant prisoners experience numerous additional difficulties in prison including the ambiguous status of a pregnant prisoner, physical aspects of pregnancy and the degradation of the handcuffed or chained prisoner during visits to the more public setting of hospital. This article draws on Erving Goffman's concepts of closed institutions, dramaturgy and mortification of self, Crewe et al.'s work on the gendered pains of imprisonment and Crawley's notion of 'institutional thoughtlessness', and proposes a new concept of institutional ignominy to understand the embodied situation of the pregnant prisoner.

Protocol for a mixed-methods exploratory investigation of care following intensive care discharge: the REFLECT study.

INTRODUCTION: A substantial number of patients discharged from intensive care units (ICUs) subsequently die without leaving hospital. It is unclear how many of these deaths are preventable. Ward-based management following discharge from ICU is an area that patients and healthcare staff are concerned about. The primary aim of REFLECT (Recovery Following Intensive Care Treatment) is to develop an intervention plan to reduce in-hospital mortality rates in patients who have been discharged from ICU. METHODS AND ANALYSIS: REFLECT is a multicentre mixed-methods exploratory study examining ward care delivery to adult patients discharged from ICU. The study will be made up of four substudies. Medical notes of patients who were discharged from ICU and subsequently died will be examined using a retrospective case records review (RCRR) technique. Patients and their relatives will be interviewed about their post-ICU care, including relatives of patients who died in hospital following ICU discharge. Staff involved in the care of patients post-ICU discharge will be interviewed about the care of this patient group. The medical records of patients who survived their post-ICU stay will also be reviewed using the RCRR technique. The analyses of the substudies will be both descriptive and use a modified grounded theory approach to identify emerging themes. The evidence generated in these four substudies will form the basis of the intervention development, which will take place through stakeholder and clinical expert meetings. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Wales Research and Ethics Committee 4 (17/WA/0107). We aim to disseminate the findings through international conferences, international peer-reviewed journals and social media. TRIAL REGISTRATION NUMBER: ISRCTN14658054.

In labor or in limbo? The experiences of women undergoing induction of labor in hospital: Findings of a qualitative study.

BACKGROUND: Induction of labor currently accounts for around 25% of all births in high-resource countries, yet despite much research into medical aspects, little is known about how women experience this process. This study aimed to explore in depth the induction experience of primiparous women. METHODS: A qualitative study was undertaken, using a sample of 21 first-time mothers from a maternity unit in the south of England. Semi-structured interviews were conducted in women's homes between 3 and 6 weeks postnatally. Data were recorded, transcribed, and analyzed thematically. RESULTS: Women awaiting induction on the prenatal ward appeared to occupy a liminal state between pregnancy and labor. Differences were noted between women's and midwives' notions of what constituted "being in labor" and the ward lacked the flexibility to provide individualized care for women in early labor. Unexpected delays in the induction process were common and were a source of anxiety, as was separation from partners at night. Women were not always clear about their plan of care, which added to their anxiety. CONCLUSIONS: Conceptualizing induction as a liminal state may enhance understanding of women's feelings and promote a more woman-centered approach to care. Thorough preparation for induction, including an explanation of possible delays is fundamental to enabling women to form realistic expectations. Care providers need to consider whether women undergoing induction are receiving adequate support, analgesia, and comfort aids conducive to the promotion of physiological labor and the reduction of anxiety.

Decision aids for people facing health treatment or screening decisions.

BACKGROUND: Decision aids are interventions that support patients by making their decisions explicit, providing information about options and associated benefits/harms, and helping clarify congruence between decisions and personal values. OBJECTIVES: To assess the effects of decision aids in people facing treatment or screening decisions. SEARCH METHODS: Updated search (2012 to April 2015) in CENTRAL; MEDLINE; Embase; PsycINFO; and grey literature; includes CINAHL to September 2008. SELECTION CRITERIA: We included published randomized controlled trials comparing decision aids to usual care and/or alternative interventions. For this update, we excluded studies comparing detailed versus simple decision aids. DATA COLLECTION AND ANALYSIS: Two reviewers independently screened citations for inclusion, extracted data, and assessed risk of bias. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made and the decision-making process.Secondary outcomes were behavioural, health, and health system effects.We pooled results using mean differences (MDs) and risk ratios (RRs), applying a random-effects model. We conducted a subgroup analysis of studies that used the patient decision aid to prepare for the consultation and of those that used it in the consultation. We used GRADE to assess the strength of the evidence. MAIN RESULTS: We included 105 studies involving 31,043 participants. This update added 18 studies and removed 28 previously included studies comparing detailed versus simple decision aids. During the 'Risk of bias' assessment, we rated two items (selective reporting and blinding of participants/personnel) as mostly unclear due to inadequate reporting. Twelve of 105 studies were at high risk of bias.With regard to the attributes of the choice made, decision aids increased participants' knowledge (MD 13.27/100; 95% confidence interval (CI) 11.32 to 15.23; 52 studies; N = 13,316; high-quality evidence), accuracy of risk perceptions (RR 2.10; 95% CI 1.66 to 2.66; 17 studies; N = 5096; moderate-quality evidence), and congruency between informed values and care choices (RR 2.06; 95% CI 1.46 to 2.91; 10 studies; N = 4626; low-quality evidence) compared to usual care.Regarding attributes related to the decision-making process and compared to usual care, decision aids decreased decisional conflict related to feeling uninformed (MD -9.28/100; 95% CI -12.20 to -6.36; 27 studies; N = 5707; high-quality evidence), indecision about personal values (MD -8.81/100; 95% CI -11.99 to -5.63; 23 studies; N = 5068; high-quality evidence), and the proportion of people who were passive in decision making (RR 0.68; 95% CI 0.55 to 0.83; 16 studies; N = 3180; moderate-quality evidence).Decision aids reduced the proportion of undecided participants and appeared to have a positive effect on patient-clinician communication. Moreover, those exposed to a decision aid were either equally or more satisfied with their decision, the decision-making process, and/or the preparation for decision making compared to usual care.Decision aids also reduced the number of people choosing major elective invasive surgery in favour of more conservative options (RR 0.86; 95% CI 0.75 to 1.00; 18 studies; N = 3844), but this reduction reached statistical significance only after removing the study on prophylactic mastectomy for breast cancer gene carriers (RR 0.84; 95% CI 0.73 to 0.97; 17 studies; N = 3108). Compared to usual care, decision aids reduced the number of people choosing prostate-specific antigen screening (RR 0.88; 95% CI 0.80 to 0.98; 10 studies; N = 3996) and increased those choosing to start new medications for diabetes (RR 1.65; 95% CI 1.06 to 2.56; 4 studies; N = 447). For other testing and screening choices, mostly there were no differences between decision aids and usual care.The median effect of decision aids on length of consultation was 2.6 minutes longer (24 versus 21; 7.5% increase). The costs of the decision aid group were lower in two studies and similar to usual care in four studies. People receiving decision aids do not appear to differ from those receiving usual care in terms of anxiety, general health outcomes, and condition-specific health outcomes. Studies did not report adverse events associated with the use of decision aids.In subgroup analysis, we compared results for decision aids used in preparation for the consultation versus during the consultation, finding similar improvements in pooled analysis for knowledge and accurate risk perception. For other outcomes, we could not conduct formal subgroup analyses because there were too few studies in each subgroup. AUTHORS' CONCLUSIONS: Compared to usual care across a wide variety of decision contexts, people exposed to decision aids feel more knowledgeable, better informed, and clearer about their values, and they probably have a more active role in decision making and more accurate risk perceptions. There is growing evidence that decision aids may improve values-congruent choices. There are no adverse effects on health outcomes or satisfaction. New for this updated is evidence indicating improved knowledge and accurate risk perceptions when decision aids are used either within or in preparation for the consultation. Further research is needed on the effects on adherence with the chosen option, cost-effectiveness, and use with lower literacy populations.

Understanding and meeting information needs for patients with posttraumatic stress disorder.

BACKGROUND: Posttraumatic Stress Disorder (PTSD) is a commonly occurring mental illness. There are multiple treatments for PTSD that have similar effectiveness, but these treatments differ substantially in other ways. It is desirable to have well-informed patients involved in treatment choices. A patient decision aid (PtDA) is one method to achieve this goal. This manuscript describes the rationale and development of a patient decision aid (PtDA) designed for patients with PTSD. METHODS: We conducted an informational needs assessment of veterans (n = 19) to obtain their baseline information needs prior to the development of the PtDA. We also conducted a literature review of effective PTSD treatments, and we calculated respective effective sizes. A PtDA prototype was developed according to the guidelines from the International Patient Decision Aid Standards. These standards guided our development of both content and format for the PtDA. In accordance with the standards, we gathered feedback from patients (n = 20) and providers (n = 7) to further refine the PtDA. The information obtained from patients and the literature review was used to develop a decision aid for patients with PTSD. RESULTS: Patients with PTSD reported a strong preference to receive information about treatment options. They expressed interest in also learning about PTSD symptoms. The patients preferred information presented in a booklet format. From our literature review several treatments emerged as effective for PTSD: Cognitive Therapy, Exposure Therapy, Eye Movement Desensitization Therapy, Selective Serotonin Reuptake Inhibitors, venlafaxine, and risperidone. CONCLUSION: It appears that the criteria set forth to develop decision aids can effectively be applied to PTSD. The resultant PTSD patient decision aid is a booklet that describes the causes, symptoms, and treatments for PTSD. Future work will examine the effects of use of the PTSD decision aid in clinical practice. TRIAL REGISTRATION: Clinicaltrials.gov identifier NCT00908440. Registered May 20, 2009.

Women's views on partnership working with midwives during pregnancy and childbirth.

OBJECTIVE: to explore whether the UK Government agenda for partnership working and choice was realised or desired for women during pregnancy and childbirth. DESIGN: a qualitative study was used to explore women's experience of partnership working with midwives. Data was generated using a diary interview method throughout pregnancy and birth. SETTING: 16 women were recruited from two district general hospitals in the South East of England. FINDINGS: three themes emerged from the data: organisation of care, relationships and choice. Women described their antenatal care as 'ticking the box', with midwives focusing on the bio-medical aspects of care but not meeting their psycho-social and emotional needs. Time poverty was a significant factor in this finding. Women rarely described developing a partnership relationship with midwives due to a lack of continuity of care and time in which to formulate such relationships. In contrast women attending birth centres for their antenatal care were able to form relationships with a group of midwives who shared a philosophy of care and had sufficient time in which to meet women's holistic needs. Most of the women in this study did not feel they were offered the choices as outlined in the national choice agenda (DoH, 2007). IMPLICATIONS FOR PRACTICE: NHS Trusts should review the models of care available to women to ensure that these are not only safe but support women's psycho-social and emotional needs as well. Partnership case loading models enable midwives and women to form trusting relationships that empowers women to feel involved in decision making and to exercise choice. Group antenatal and postnatal care models also effectively utilise midwifery time whilst increasing maternal satisfaction and social engagement. Technology should also be used more effectively to facilitate inter-professional communication and to provide a more flexible service to women.

A randomized controlled clinical trial of a patient decision aid for posttraumatic stress disorder.

OBJECTIVE: Patient decision aids have been used in many clinical situations to improve the patient centeredness of care. A patient decision aid for patients with posttraumatic stress disorder (PTSD) has not been developed or tested. The authors evaluated the effects of a patient decision aid on the patient centeredness of PTSD treatment. METHODS: The study was a randomized trial of a patient decision aid for PTSD versus treatment as usual (control group). The participants were 132 male and female veterans who presented to a single U.S. Department of Veterans Affairs hospital with a new diagnosis of PTSD. Patient centeredness was assessed by knowledge of PTSD and its treatment, level of decisional uncertainty, and ability to state a preferred treatment option. Secondary outcomes included treatments received and PTSD symptoms in the six months after study entry. RESULTS: Compared with the control group (N=65), participants who reviewed the patient decision aid (N=63) had higher scores for PTSD knowledge (p=.002) and less conflict about their choice of treatment (p=.003). In addition, participants who reviewed the patient decision aid were more likely to select and receive an evidence-based treatment for PTSD (p=.04) and had superior PTSD outcomes (p=.004) compared with the control group. CONCLUSIONS: Use of a patient decision aid was associated with improvements in patient-centered PTSD treatment. The patient decision aid was also associated with greater use of evidence-based treatments and improvement of PTSD symptoms. This study suggests that clinics should consider using a patient decision aid for patients with PTSD.

The effects of a palliative care program on antidepressant use and continuing maintenance medications in near end-of-life oncology patients (the HEALED study).

RATIONAL: The use of antidepressants and maintenance medications for cancer patients in a palliative care setting is controversial. The effectiveness of antidepressants and consequences of discontinuing maintenance medications are unknown in this population. OBJECTIVE: Compare the quality of life of patients taking and not taking antidepressants at entry to a palliative care clinic, and to observe maintenance medication use in this population, along with consequences of stopping them. METHODS: Prospective, monthly review of medications, quality of life, and hospitalizations were recorded from oncology patients that attended a palliative care clinic. In addition, a retrospective chart review of medications and hospitalizations of oncology patients that did and did not attend a palliative care clinic was performed. RESULTS: Forty-three prospective patients were enrolled. Patients had similar quality of life whether or not they were taking antidepressants (p = 0.52). Number of maintenance medications at entry and at final evaluation did not change (p = 0.45). No hospitalizations were caused by discontinuation of maintenance medications. QOL of patients did not decline after coming to the clinic based on the baseline and second FACT-G questionnaires (p = 0.84). Fifty-six patients were included in the retrospective portion of this study. The non-palliative care patients had higher proportions of maintenance medications and rates of hospitalizations when compared to the palliative care patients. CONCLUSION: Quality of life is essentially the same between palliative care patients, whether they are receiving antidepressants or not.

Launching a virtual decision lab: development and field-testing of a web-based patient decision support research platform.

BACKGROUND: Over 100 trials show that patient decision aids effectively improve patients' information comprehension and values-based decision making. However, gaps remain in our understanding of several fundamental and applied questions, particularly related to the design of interactive, personalized decision aids. This paper describes an interdisciplinary development process for, and early field testing of, a web-based patient decision support research platform, or virtual decision lab, to address these questions. METHODS: An interdisciplinary stakeholder panel designed the web-based research platform with three components: a) an introduction to shared decision making, b) a web-based patient decision aid, and c) interactive data collection items. Iterative focus groups provided feedback on paper drafts and online prototypes. A field test assessed a) feasibility for using the research platform, in terms of recruitment, usage, and acceptability; and b) feasibility of using the web-based decision aid component, compared to performance of a videobooklet decision aid in clinical care. RESULTS: This interdisciplinary, theory-based, patient-centered design approach produced a prototype for field-testing in six months. Participants (n = 126) reported that: the decision aid component was easy to use (98%), information was clear (90%), the length was appropriate (100%), it was appropriately detailed (90%), and it held their interest (97%). They spent a mean of 36 minutes using the decision aid and 100% preferred using their home/library computer. Participants scored a mean of 75% correct on the Decision Quality, Knowledge Subscale, and 74 out of 100 on the Preparation for Decision Making Scale. Completing the web-based decision aid reduced mean Decisional Conflict scores from 31.1 to 19.5 (p < 0.01). CONCLUSIONS: Combining decision science and health informatics approaches facilitated rapid development of a web-based patient decision support research platform that was feasible for use in research studies in terms of recruitment, acceptability, and usage. Within this platform, the web-based decision aid component performed comparably with the videobooklet decision aid used in clinical practice. Future studies may use this interactive research platform to study patients' decision making processes in real-time, explore interdisciplinary approaches to designing web-based decision aids, and test strategies for tailoring decision support to meet patients' needs and preferences.

Medical dominance within research ethics committees.

Qualitative research is reported which explores the perceptions of members of the U.K.'s independent Phase I ethics committees (IECs) about key issues identified following a literature review. Audio-recorded interviews were conducted with ten expert and ten lay members from all IECs except the one to which the lead author was attached. Transcripts were thematically analyzed following a broadly hermeneutical approach. The findings-dealing with such matters as recruitment strategies and length of service; attitudes towards member categories, published ethics guidelines, and the adequacy of insurance; levels of training and views on achieving a recognised level of competence-have an intrinsic interest, but it is when the findings are considered collectively using Freidson's theory of professional dominance that they reveal the influence the medical profession can have in shaping ethics review.

Shared decision making in the management of children with newly diagnosed immune thrombocytopenia.

This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants' experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of "anxiety, fear, and confusion"; the need to "understand information"; and "treatment choice," the experience of which was age dependent. For parents, "anxiety, fear, and confusion" was a dominant theme; "treatment choice" revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, "comfort level" highlighted factors contributing to professionals' comfort with offering options; "assumptions" were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; "providing information" was informative regarding modes of facilitating SDM; and "treatment choice" revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.

Decision aids for people facing health treatment or screening decisions.

BACKGROUND: Decision aids are intended to help people participate in decisions that involve weighing the benefits and harms of treatment options often with scientific uncertainty. OBJECTIVES: To assess the effects of decision aids for people facing treatment or screening decisions. SEARCH METHODS: For this update, we searched from 2009 to June 2012 in MEDLINE; CENTRAL; EMBASE; PsycINFO; and grey literature. Cumulatively, we have searched each database since its start date including CINAHL (to September 2008). SELECTION CRITERIA: We included published randomized controlled trials of decision aids, which are interventions designed to support patients' decision making by making explicit the decision, providing information about treatment or screening options and their associated outcomes, compared to usual care and/or alternative interventions. We excluded studies of participants making hypothetical decisions. DATA COLLECTION AND ANALYSIS: Two review authors independently screened citations for inclusion, extracted data, and assessed risk of bias. The primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were:A) 'choice made' attributes;B) 'decision-making process' attributes.Secondary outcomes were behavioral, health, and health-system effects. We pooled results using mean differences (MD) and relative risks (RR), applying a random-effects model. MAIN RESULTS: This update includes 33 new studies for a total of 115 studies involving 34,444 participants. For risk of bias, selective outcome reporting and blinding of participants and personnel were mostly rated as unclear due to inadequate reporting. Based on 7 items, 8 of 115 studies had high risk of bias for 1 or 2 items each.Of 115 included studies, 88 (76.5%) used at least one of the IPDAS effectiveness criteria: A) 'choice made' attributes criteria: knowledge scores (76 studies); accurate risk perceptions (25 studies); and informed value-based choice (20 studies); and B) 'decision-making process' attributes criteria: feeling informed (34 studies) and feeling clear about values (29 studies).A) Criteria involving 'choice made' attributes:Compared to usual care, decision aids increased knowledge (MD 13.34 out of 100; 95% confidence interval (CI) 11.17 to 15.51; n = 42). When more detailed decision aids were compared to simple decision aids, the relative improvement in knowledge was significant (MD 5.52 out of 100; 95% CI 3.90 to 7.15; n = 19). Exposure to a decision aid with expressed probabilities resulted in a higher proportion of people with accurate risk perceptions (RR 1.82; 95% CI 1.52 to 2.16; n = 19). Exposure to a decision aid with explicit values clarification resulted in a higher proportion of patients choosing an option congruent with their values (RR 1.51; 95% CI 1.17 to 1.96; n = 13).B) Criteria involving 'decision-making process' attributes:Decision aids compared to usual care interventions resulted in:a) lower decisional conflict related to feeling uninformed (MD -7.26 of 100; 95% CI -9.73 to -4.78; n = 22) and feeling unclear about personal values (MD -6.09; 95% CI -8.50 to -3.67; n = 18);b) reduced proportions of people who were passive in decision making (RR 0.66; 95% CI 0.53 to 0.81; n = 14); andc) reduced proportions of people who remained undecided post-intervention (RR 0.59; 95% CI 0.47 to 0.72; n = 18).Decision aids appeared to have a positive effect on patient-practitioner communication in all nine studies that measured this outcome. For satisfaction with the decision (n = 20), decision-making process (n = 17), and/or preparation for decision making (n = 3), those exposed to a decision aid were either more satisfied, or there was no difference between the decision aid versus comparison interventions. No studies evaluated decision-making process attributes for helping patients to recognize that a decision needs to be made, or understanding that values affect the choice.C) Secondary outcomes Exposure to decision aids compared to usual care reduced the number of people of choosing major elective invasive surgery in favour of more conservative options (RR 0.79; 95% CI 0.68 to 0.93; n = 15). Exposure to decision aids compared to usual care reduced the number of people choosing to have prostate-specific antigen screening (RR 0.87; 95% CI 0.77 to 0.98; n = 9). When detailed compared to simple decision aids were used, fewer people chose menopausal hormone therapy (RR 0.73; 95% CI 0.55 to 0.98; n = 3). For other decisions, the effect on choices was variable.The effect of decision aids on length of consultation varied from 8 minutes shorter to 23 minutes longer (median 2.55 minutes longer) with 2 studies indicating statistically-significantly longer, 1 study shorter, and 6 studies reporting no difference in consultation length. Groups of patients receiving decision aids do not appear to differ from comparison groups in terms of anxiety (n = 30), general health outcomes (n = 11), and condition-specific health outcomes (n = 11). The effects of decision aids on other outcomes (adherence to the decision, costs/resource use) were inconclusive. AUTHORS' CONCLUSIONS: There is high-quality evidence that decision aids compared to usual care improve people's knowledge regarding options, and reduce their decisional conflict related to feeling uninformed and unclear about their personal values. There is moderate-quality evidence that decision aids compared to usual care stimulate people to take a more active role in decision making, and improve accurate risk perceptions when probabilities are included in decision aids, compared to not being included. There is low-quality evidence that decision aids improve congruence between the chosen option and the patient's values.New for this updated review is further evidence indicating more informed, values-based choices, and improved patient-practitioner communication. There is a variable effect of decision aids on length of consultation. Consistent with findings from the previous review, decision aids have a variable effect on choices. They reduce the number of people choosing discretionary surgery and have no apparent adverse effects on health outcomes or satisfaction. The effects on adherence with the chosen option, cost-effectiveness, use with lower literacy populations, and level of detail needed in decision aids need further evaluation. Little is known about the degree of detail that decision aids need in order to have a positive effect on attributes of the choice made, or the decision-making process.

Choosing motherhood: the complexities of pregnancy decision-making among young black women 'looked after' by the State.

OBJECTIVE: this paper addresses the experiences of a group of young black teenage mothers looked after by the State, most of whom were also either migrants or asylum seekers. The paper explores the experience of discovery of pregnancy, attempts to seek professional help and the eventual decision to continue with the pregnancy. DESIGN: an interpretative study with in-depth interviews. SETTINGS: interviews were carried out in the participants' homes and focussed on their experiences of pregnancy decision-making. PARTICIPANTS: 15 young women (aged 16-19), from black minority ethnic groups, with a history of care (past or present), currently pregnant or mothers of a child no older than two years of age. FINDINGS: all the pregnancies were unexpected: eight of the informants conceived as a result of rape and seven while in a relationship. All the young women chose motherhood over abortion despite their complex social and pregnancy background. CONCLUSIONS: the importance of social positioning of migrants in terms of the cluster of negative aspects and environmental disadvantage generally experienced by most immigrants in the host country is raised in this paper. Care practices of pregnant women with complex social factors were little observant of woman-centred care approaches.

Decision support for patients: values clarification and preference elicitation.

Providing a patient with decision support involves helping that person to choose among two or more elective health care options. "Values Clarification" and "Preference Elicitation" are integral to the full decision-support process. During values clarification, the patient and clinician gain insight into the importance that the patient ascribes to the options' positive and negative characteristics. During preference elicitation, the patient identifies which options are, overall, personally most favored (and, by corollary, which are least favored). This article identifies the roles that values clarification/preference elicitation (VC/PE) play in the full process of patients' decision support, outlines various approaches to fostering VC/PE, and poses some fundamental and applied research questions about VC/PE. It also argues that, in order to proceed to answer the posed research questions, investigators in the field of patients' decision support require a systematic set of criteria for comparing the performance of different VC/PE techniques.