Midwifery students': Developing an understanding of being 'with woman'--A qualitative study.

OBJECTIVES: To explore and describe what student midwives, enrolled in one Western Australian (WA) university, had witnessed, learned and experienced regarding the concept of being 'with woman'. DESIGN: A qualitative descriptive design was chosen. SETTING: A university in Perth, Western Australia. PARTICIPANTS: Nineteen student midwives from an undergraduate and a post graduate midwifery course. METHODS: Data were collected from audio-recorded interviews. Thematic analysis of interview transcripts was used to identify commonalities of perceptions and experiences of being 'with woman' for students. Data saturation guided when recruitment ceased and final sample size was achieved. FINDINGS: Student interviews revealed that when considering the concept of being 'with woman' students were able to give descriptors of what they interpreted the meaning of being 'with woman' to be. They also described factors that impacted their learning of how to be 'with woman'. Included in their descriptors were that being 'with woman' enables informed choice, it creates a connection, it means the woman is at the centre of care and that it can occur in all contexts. The factors that impacted their learning of how to be 'with woman' were the importance of positive midwife role models, that providing continuity of care models accelerate learning, that the student role and workload can impact their perceived ability to be with woman and that they are aware it takes time to learn how to be 'with woman'. CONCLUSION AND IMPLICATIONS: The art and skills of being 'with woman' are central to midwifery practice; students in this study were able to demonstrate understanding of the concept and also highlight factors that influence their learning of how to be 'with woman'. Findings can inform how the phenomenon of being 'with woman' can be intentionally introduced into midwifery programs, with particular emphasis on positive midwifery role models, realistic student workload and recognition of the value of the Continuity of Care Experience.

Total thyroidectomy for Graves' disease-what do our patients think? A qualitative cohort study to evaluate the surgical management of Graves' disease.

INTRODUCTION: Total thyroidectomy for Grave's disease has been covered extensively in literature. There are established risks and side effects of the procedure, but in experienced hands, this is minimised. Studies show the physical complication rate of total thyroidectomy, but not a holistic view. The authors pose the question, "what do our patients really think"? Has there been a significant improvement in quality of life by doing this surgery? METHODS: A cohort of patients who underwent total thyroidectomy for Graves' disease between the dates 2015-2018. A total of 95 patients were identified. The Glasgow Benefit Inventory (GBI) was used to ascertain patient's opinions on their surgery. RESULTS: There were 54 responders, 46 female and 8 male. Average age was 41, with a range 20-81. Average GBI scores were 13.35 (SD 30.16). A general subset had an average score of 19.21 (SD = 32.59), a social subset average was 9.57 (SD = 25.61), and a physical subset was average -6.79 (SD = 37.40). Patients' feedback included positive and negative statements on their feelings surrounding pre-operative communication and post-operative side effects. CONCLUSION: Overall, the GBI scores are positive, thereby showing an improvement in quality of life since having total thyroidectomy for Graves. Pre-operative communication was of paramount importance. It should be made clear to patients that they will require medication after surgery. The majority of patients stated they would prefer to know about "minor" post -operative side effects like weight gain or mood change post op. This highlights the importance of the consenting process- Montgomery Ruling-that clinicians explain the risks involved with surgery according to what the patient would deem a risk. In addition, they must be informed of the non-surgical options available, therefore, surgeons should be able to discuss risks and benefits of radio-iodine and anti-thyroid drugs too.

Consent in pregnancy: A qualitative study of the views and experiences of women and their healthcare professionals.

OBJECTIVE: Consent in antenatal settings is contentious, poorly understood and recognised as problematic for pregnant women. This study aimed to investigate participants' views and experiences of the consent process. DESIGN: Qualitative research performed in a large urban teaching hospital in London. Sixteen pregnant women and fifteen healthcare professionals (obstetricians and midwives) participated. Consent consultations were observed and in-depth interviews carried out with healthcare professionals and pregnant women using semi-structured interview guides. Data were collectively analysed to identify themes in the experiences of the consent process. RESULTS: Four themes were identified: 1) Choice and shared decision-making. Pregnant women do not always experience consent in a choice-making way and often do not understand information provided to them. 2) Contextualising information disclosure. What is important to women is not only the information but the relational context in which consent is obtained. 3) Quality of HCP-woman relationship. Trust in their healthcare professional sometimes makes women seek less information and conversely. Individualised information is desired by women but professionals found it difficult to ensure that women receive this in practice. 4) Law and professional practice. Doctors are more aware of legal developments in consent related to the Montgomery case than their midwifery colleagues, but they are not always certain of the implications. CONCLUSION: Results suggest that an effective antenatal consent process which empowers pregnant women requires their understanding of provided information to be elicited. There is a delicate balance to be struck between the trust of a patient in their professional and information-based consent, rather than a simple focus on improving information provision. Whilst recognising women's desire for bespoke consent professionals acknowledged the difficulty of ensuring this in practice. If consent is to remain the legal yardstick of autonomous choice-making, women's understanding and that shared with their healthcare professional needs to be more explicitly addressed.

Leaving gift-giving behind: the ethical status of the human body and transplant medicine.

The paper argues that the idea of gift-giving and its associated imagery, which has been founding the ethics of organ transplants since the time of the first successful transplants, should be abandoned because it cannot effectively block arguments for (regulated) markets in human body parts. The imagery suggests that human bodies or their parts are transferable objects which belong to individuals. Such imagery is, however, neither a self-evident nor anthropologically unproblematic construal of the relation between a human being and their body. The paper proposes an alternative conceptualization of that relation, the identity view according to which a human being is identical with their living body. This view, which offers a new ethical perspective on some central concepts of transplant medicine and its ethical and legal standards and institutions, supports widely shared intuitive ethical judgments. On this proposal, an act of selling a human body or one of its parts is an act of trade in human beings, not in owned objects. Transfers of human body parts for treatment purposes are to be seen as sharing in another human being's misfortune rather than as giving owned objects. From the perspective of policy-making, the proposal requires, first, that informed consent for removal of transplant material be obtained from the potential benefactor. Secondly, explicit consent by the prospective benefactor is obligatory in the case of removal of transplant material from a living benefactor. Thirdly, in the case of posthumous retrieval, informed consent by the potential benefactor during their life is not ethically indispensable. Additionally, while refusal of posthumous retrieval expressed by a potential benefactor during their life must be respected, such a refusal needs ethical justification and explanation.

"I assumed that one was a placebo": exploring the consent process in a sham controlled acupressure trial.

OBJECTIVES: In clinical trials where participants are likely to be able to distinguish between true and sham interventions, informing participants that they may receive a sham intervention increases the likelihood of participants 'breaking the blind' and invalidating trial findings. The present study explored participants' perceptions of the consent process in a sham controlled acupressure trial which did not explicitly indicate participants may receive a sham intervention. DESIGN: Nested qualitative study within a randomised sham controlled trial of acupressure wristbands for chemotherapy-related nausea. Convenience sample of 26 patients participated in semi-structured interviews. Interviews were audio-recorded and transcribed verbatim. Transcripts analysed thematically using framework analysis. SETTING: Study conducted within three geographical sites in the UK: Manchester, Liverpool, and Plymouth. RESULTS: All participants indicated that they believed they were fully informed when providing written consent to participate in the trial. Participants' perceived it was acceptable to employ a sham intervention within the trial of acupressure wristbands without informing potential participants that they may receive a sham treatment. Despite the fact that participants were not informed that one of the treatment arms was a sham intervention the majority indicated they assumed one of the treatment arms would be placebo. CONCLUSIONS: Many trials of acupuncture and acupressure do not inform participants they may receive a sham intervention. The current study indicates patients' perceive this approach to the consent process as acceptable. However, the fact participants assume one treatment may be placebo threatens the methodological basis for utilising this approach to the consent process.

[Involuntary treatment in psychiatry]. / Zwangsunterbringung und Zwangsbehandlung in der Psychiatrie.

Involuntary treatment in psychiatry should be reflected under the German constitutional right of self-determination und the ethical principles of autonomy and beneficience. Forced treatment in psychiatry should be applied only as a last resort. A narrative perspective reconstructs the case of Gustl Mollath who was hospitalized in forensic-psychiatric institutions because of an alleged delusion. Psychiatric experts should be aware of the potential of misuse when defining what is real and what seems to be a delusion.

Doctors and vampires in sub-Saharan Africa: ethical challenges in clinical trial research.

Collecting blood samples from individuals recruited into clinical research projects in sub-Saharan Africa can be challenging. Strikingly, one of the reasons for participant reticence is the occurrence of local rumors surrounding "blood stealing" or "blood selling." Such fears can potentially have dire effects on the success of research projects--for example, high dropout rates that would invalidate the trial's results--and have ethical implications related to cultural sensitivity and informed consent. Though commonly considered as a manifestation of the local population's ignorance, these rumors represent a social diagnosis and a logical attempt to make sense of sickness and health. Born from historical antecedents, they reflect implicit contemporary structural inequalities and the social distance between communities and public health institutions. We aim at illustrating the underlying logic governing patients' fear and argue that the management of these beliefs should become an intrinsic component of clinical research.

[Words before actions- the significance of counselling in the Praena-Test era]. / Worte vor Taten - der Stellenwert der Beratung in der Ära des Praena-Tests.

Due to new offers in prenatal diagnostics pregnant women are forced to make choices. In Switzerland physicians are obliged to inform previous to prenatal tests and to obtain informed consent. Considering the complexity of this information and the consequences of a positive result, counselling is challenging, especially in an intercultural context. A questionnaire-based study compared information processing, test interpretation and emotional response of pregnant women from Switzerland and adjacent countries with Turkish women. Knowledge of the latter was significantly lower and they found counselling more unsettling, but their acceptance of prenatal tests was significantly higher. An empathetic approach and the right words are decisive, and counselling will even gain importance when considering the increase in options patients are confronted with.

Les nouvelles offres dans le diagnostic prénatal contraignent les femmes enceintes à faire des choix. En Suisse, les médecins ont le devoir d'informer au sujet des tests prénataux et en obtenir le consentement. Compte tenu de la complexité, ce conseil est exigeant, avant tout dans un contexte interculturel. Une étude basée sur des questionnaires a comparé les connaissances et les réactions émotionnelles des femmes enceintes de Suisse avec des femmes venant de la Turquie. Cela a montré que les connaissances de ces dernières étaient moindres et qu'elles se sentaient plus insécurisées tout en montrant une acceptation significativement plus élevée relativement au diagnostic prénatal. Une attitude empathique et des mots bien choisis sont décisifs et leur importance va encore prendre de l'ampleur avec l'augmentation des options à disposition des patientes.

Implications of the 'placebo effect' for CAM research.

The 'placebo effect' concept is intrinsic to the architecture of the double blind placebo randomised controlled trial (RCT), the oft quoted 'gold standard' method of clinical research whose findings are supposed to inform our understanding of the interventions used in clinical practice. The 'placebo effect' concept is often used in discussions of both clinical practice and clinical research, particularly when discussing why patients report improvements with complementary and alternative medicines (CAMs). Despite its frequent use, 'placebo effect' is a non-sequitur, thus confusion abounds. In routine healthcare patients are not told that they might receive placebo. However, in clinical trials the opposite is true. Telling people that they might receive a placebo really complicates things. The uncertainty invoked by information that a placebo may be given can impact trial recruitment, the delivery of the intervention, and the reporting of outcomes, as can the 'meaning responses' invoked by other types of information provided to patients in standard RCT designs. Future CAM research should consider alternative RCT designs that help ensure that participants' experiences are uncontaminated by 'meaning responses' to information that they may receive fake treatments, i.e. placebos.

Midwives' perceptions of their role as facilitators of informed choice in antenatal screening.

OBJECTIVE: to explore midwives' perceptions of their role as facilitators of informed choice in antenatal screening. DESIGN: qualitative. SETTING: community midwives, Yorkshire and Humber region, UK. PARTICIPANTS: community midwives offering antenatal screening (n=15). METHOD: semi-structured interviews analysed using Thematic Analysis. FINDINGS: to facilitate informed choice, midwives highlighted both the importance and challenges of engaging in discussion with women, remaining non-directive, within tight timeframes, sometimes with women unable to communicate in English or with complex social needs. CONCLUSION: midwives varied in the degree to which they believed it was their role to (1) discuss rather than just provide information and (2) to check women's understanding of the information provided. Midwives were concerned about the constraints imposed by first trimester combined screening in terms of the limited time in which they had to facilitate informed choice and the women had to make a decision about screening. To ensure that women understand the options available to them and are able to exercise an informed choice, clinical guidelines are needed that set out how midwives can actively facilitate informed screening choices without compromising patient autonomy. This is especially important given the small 'window of opportunity' within which combined first trimester screening is a viable option.

Assessment of decision-making capacity: views and experiences of consultation psychiatrists.

BACKGROUND: Decision-making capacity (DMC) assessments can have profound consequences for patients. With an aging population, an increasing emphasis on shared decision-making, and a rising number of potential medical interventions, the need for such assessments will continue to grow. OBJECTIVE: To assess psychosomatic medicine clinicians' training, experiences, and views about DMC assessments. METHOD: Online survey of members of the Academy of Psychosomatic Medicine (APM). Of 780 eligible members, 288 responded to the survey (36.9% response rate). RESULTS: Approximately 1 in 6 psychiatric consultations are DMC assessments. Ninety percent of respondents reported that at least half of their capacity assessments involve patients older than 60 years. DMC assessments were seen as more challenging and time-consuming than other types of consultations; yet training in capacity evaluations was seen as suboptimal and half of respondents felt the evidence-base guiding DMC assessment is somewhat or much weaker than for other types of psychiatric consultations. In addition, the practice of capacity assessment seems to vary widely with no consistent approach among respondents. Respondents strongly endorsed multiple areas and topics for potential future research, indicating a desire for a stronger evidence-base. CONCLUSIONS: Members of the APM perceive capacity assessments as common and challenging. Yet they perceive having received subpar training with relatively weak evidence to guide their current practice. Future research should address these potential deficiencies, given the likelihood that DMC assessments will only become more common.

A difficult conversation? The views and experiences of parents and professionals on the consent process for perinatal postmortem after stillbirth.

OBJECTIVE: To describe the experiences, knowledge and views of both parents and professionals regarding the consent process for perinatal postmortem. DESIGN: Internet-based survey. SETTING: Obstetricians, midwives and perinatal pathologists currently working in the UK. Parents who have experienced a stillbirth in the UK in the previous 10 years. SAMPLE: Obstetricians, midwives and perinatal pathologists registered with their professional bodies. Parents who accessed the Sands website or online forum. METHODS: Online self-completion questionnaire with both fixed-choice and open-ended questions. RESULTS: Responses were analysed from 2256 midwives, 354 obstetricians, 21 perinatal pathologists and 460 parents. The most common reason for parents to request postmortem examination was to find a cause for their baby's death; the prevention of stillbirths in others also ranked highly. Perinatal pathologists possessed greatest knowledge of the procedure and efficacy of postmortem, but were unlikely to meet bereaved parents. The majority of professionals and parents ranked emotional distress and a lengthy wait for results as barriers to consent. The majority of staff ranked workload, negative publicity, religion and cultural issues as important barriers, whereas most parents did not. Almost twice as many parents who declined postmortem examination later regretted their decision compared with those who accepted the offer (34.4 versus 17.4%). CONCLUSION: Emotional, practical and psychosocial issues can act as real or perceived barriers for staff and bereaved parents. Education is required for midwives and obstetricians, to increase their knowledge to ensure accurate counselling, with due regard for the highly individual responses of bereaved parents. The contribution of perinatal pathologists to staff education and parental decision-making would be invaluable.

Consent to transfusion: patients' and healthcare professionals' attitudes towards the provision of blood transfusion information.

BACKGROUND: Patients should be informed about the risks and benefits of blood transfusion and their consent should be documented. However, this is not routinely practised in the UK, and there have been few studies to investigate patients' and healthcare professionals' attitudes towards this process. OBJECTIVES: To investigate patients' and healthcare professionals' attitudes towards the information patients are provided with about transfusion and obtaining consent for transfusion. MEASURES: A cross-sectional qualitative survey design was employed. Attitudes towards transfusion-related information and consenting to transfusion were assessed using a patient survey and healthcare professional survey. PARTICIPANTS: One hundred and ten patients who had received a transfusion aged between 18 and 93 (60 males and 50 females) and 123 healthcare professionals (doctors, nurses and midwives) involved in administering transfusions. RESULTS: Sixty-one patients recalled consenting transfusion. The majority said they were just told they needed a transfusion (N = 67) and only 1 patient said a full discussion about the risks and the benefits of the transfusion took place. However, although 82 patients said they were satisfied with the information, 22 patients reported they would have liked to have been given more details. The majority of healthcare professionals (N = 83) felt that patients were often not given sufficient information about transfusion. CONCLUSION: Greater efforts should be made to provide information to patients about the risks and benefits of blood transfusions. Future research should explore the most effective ways of delivering this information to patients in an appropriate and timely manner.

[Perception by cancer patients of biomedical research in the era of large-scale biobanking]. / La recherche biomédicale à l'ère des tumorothèques - Point de vue des patients atteints de cancer.

In French hospitals, patients are increasingly asked to participate in research, particularly in oncology where the development of research is stimulated at a national level (plan Cancer). This article express our thoughts based on the literature about the perception by cancer patients of research activities developed in the care centre where they are treated. We focus mainly on the consent for biobanking in a context in which cancer patients are routinely requested to donate tumour samples for research. This article presents the results of a survey among patients treated in a comprehensive cancer centre. The available literature shows that patients have an overall positive image of medical research and of the existence of research activities intertwined with medical care. Patients are globally expressing a wish for more proposals to participate in research in collaboration with scientific teams.

The provision of information and informed decision-making on prenatal screening for Down syndrome: a questionnaire- and register-based survey in a non-selected population.

OBJECTIVE: Evaluating the information provision procedure about prenatal screening for Down syndrome, using informed decision-making as a quality-indicator. METHODS: Questionnaire- and register-based surveys. Midwives associated with 59 midwifery practices completed process data for 6435 pregnancies. Pregnant women (n=510) completed questionnaires on informed decision-making. RESULTS: Midwives offered information to 98.5% of women; 62.6% of them wished to receive information, of these, 81.9% actually received information. Decision-relevant knowledge was adequate in 89.0% of responding women. Knowledge about Down syndrome was less adequate than knowledge about the screening program. Participants in the screening program had higher knowledge scores on Down syndrome and on the screening program than non-participants. Of the women who intended to participate (35.8%), 3.1% had inadequate knowledge. A total of 75.5% of women made an informed decision; 94.3% of women participating in the screening program, and 64.9% of women not participating. CONCLUSION: This quality assurance study showed high levels of informed decision-making and a relatively low participation rate in the national screening program for Down syndrome in the Netherlands. Knowledge of the Down syndrome condition needs to be improved. PRACTICE IMPLICATIONS: This evaluation may serve as a pilot study for quality monitoring studies at a national level.

A comparison of a spiritually based and non-spiritually based educational intervention for informed decision making for prostate cancer screening among church-attending African-American men.

INTRODUCTION: Health communication interventions have been modestly effective for increasing informed decision making for prostate cancer screening among African-American men; however, knowledge and informed decision making is still questionable even with screening. Church-based programs may be more effective if they are spiritually based in nature. OBJECTIVE: The aims of the present study were to implement and provide an initial evaluation of a spiritually based prostate cancer screening informed decision making intervention for African-American men who attend church, and determine its efficacy for increasing informed decision making. DESIGN AND METHOD: Churches were randomized to receive either the spiritually based or the non-spiritual intervention. Trained community health advisors, who were African-American male church members, led an educational session and distributed educational print materials. Participants completed baseline and immediate follow-up surveys to assess the intervention impact on study outcomes. RESULTS: The spiritually based intervention appeared to be more effective in areas such as knowledge, and men read more of their materials in the spiritually based group than in the non-spiritual group. CONCLUSIONS: Further examination of the efficacy of the spiritually based approach to health communication is warranted.

Psychological considerations for bariatric surgery among older adults.

Older adults are increasing in weight along with the rest of the United States population. Likewise, their rates of bariatric surgery have been on the rise with changes in insurance coverage, evidence of the safety of surgery, and importance of quality of life during older age. Unfortunately, limited research has addressed the unique experiences of older adults and there are no specific guidelines that provide an effective strategy for presurgical psychological evaluation of this group. Therefore, this review aims to address considerations for psychological evaluation of older adults by adapting the current guidelines available, within the framework of a "patient-centered" approach that emphasizes individual needs. Considerations reviewed include psychosocial (e.g., developmental stage, quality of life, level of stress, and coping ability) and cognitive concerns (e.g., capacity to give informed consent, realistic expectations, and adherence to permanent lifestyle change).

Women's positions during the second stage of labour: views of primary care midwives.

AIM: This paper is a report of a study to explore the views of midwives on women's positions during the second stage of labour. BACKGROUND: Many authors recommend encouraging women to use positions that are most comfortable to them. Others advocate encouragement of non-supine positions, because offering 'choice' is not enough to reverse the strong cultural norm of giving birth in the supine position. Midwives' views on women's positions have rarely been explored. METHOD: Six focus groups were conducted in 2006-2007 with a purposive sample of 31 midwives. The data were interpreted using Thachuk's models of informed consent and informed choice. FINDINGS: The models were useful in distinguishing between two different approaches of midwives to women's positions during labour. When giving informed consent, midwives implicitly or explicitly ask a woman's consent for what they themselves prefer. When offering informed choice, a woman's preference is the starting point, but midwives will suggest other options if this is in the woman's interest. Obstetric factors and working conditions are reasons to deviate from women's preferences. CONCLUSIONS: To give women an informed choice about birthing positions, midwives need to give them information during pregnancy and discuss their position preferences. Women should be prepared for the unpredictability of their feelings in labour and for obstetric factors that may interfere with their choice of position. Equipment for non-supine births should be more midwife-friendly. In addition, midwives and students need to be able to gain experience in assisting births in non-supine positions.

Patients' predilections regarding informed consent for hospital treatments.

BACKGROUND: Respect for patient autonomy is a core principle of American medicine. Informed consent is required for surgical procedures and blood transfusions but not for most medical treatments of hospitalized patients. HYPOTHESIS: If given the option, patients want to give permission for common medical therapies during hospitalization. SUBJECTS: Participants in the study were patients admitted to the medical service of a 350-bed community teaching hospital. METHODS: A questionnaire comprising 4 scenarios of varying risk/benefit ratios was administered to all patients who agreed to participate. RESULTS: A total of 634 patients were admitted to the medicine service between June and August 2006. Two hundred and ten patients (103 men, 107 women), with a mean age (+/- SE) of 63.3 +/- 1.1 years, agreed to answer the questionnaire. Of these patients, 85% wished to participate in even trivial medical decision making (ie, potassium supplementation), 92% wished to participate in treatments with moderate risk (ie, diuretic for congestive heart failure). When a risk was initially posed as less than a 5% risk of brain hemorrhage and benefits of therapy were substantially higher (eg, thrombolysis for pulmonary embolus), 93% wanted to make the decision. If the risk of brain hemorrhage was 20% or greater, 95% wanted to make the decision. Younger patients (<65 years) were more likely to prefer requiring doctors to obtain their "permission no matter what" than were older patients (>or=65 years), and older patients were more likely to waive consent across levels of risk. CONCLUSIONS: Most acutely ill hospitalized medicine patients wished to participate in even the most mundane aspects of their medical decision making. Although it is not logistically feasible to obtain informed consent for every treatment of every hospitalized patient, clinicians should be aware of patients' predilections and might consider offering opportunities for patients to participate in clinical decision making, especially for therapies that carry substantial risk.