scholarly journals Consent to minimally invasive tissue sampling procedures in children in Mozambique: A mixed-methods study

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0259621
Author(s):  
Khátia Munguambe ◽  
Maria Maixenchs ◽  
Rui Anselmo ◽  
John Blevins ◽  
Jaume Ordi ◽  
...  

Background Minimally invasive tissue sampling (MITS), also named minimally invasive autopsy is a post-mortem method shown to be an acceptable proxy of the complete diagnostic autopsy. MITS improves the knowledge of causes of death (CoD) in resource-limited settings. Its implementation requires understanding the components of acceptability, including facilitators and barriers in real-case scenarios. Methods We undertook a mixed-methods analysis comparing anticipated (hypothetical scenario) and experienced (real-case scenario) acceptability of MITS among relatives of deceased children in Mozambique. Anticipated acceptability information was obtained from 15 interviews with relatives of deceased children. The interview focus was on whether and why they would allow the procedure on their dead child in a hypothetical scenario. Experienced acceptability data were obtained from outcomes of consent requested to relatives of 114 deceased children during MITS implementation, recorded through observations, clinical records abstraction and follow-up informal conversations with health care professionals and semi-structured interviews with relatives. Results Ninety-three percent of relatives indicated that they would hypothetically accept MITS on their deceased child. A key reason was knowing the CoD to take preventive actions; whereas the need to conform with the norm of immediate child burial, the secrecy of perinatal deaths, the decision-making complexity, the misalignment between MITS’ purpose and traditional values, lack of a credible reason to investigate CoD, and the impotency to resuscitate the deceased were identified as potential points of hesitancy for acceptance. The only refusing respondent linked MITS to a perception that sharing results would constitute a breach of confidentiality and the lack of value attached to CoD determination. Experienced acceptability revealed four different components: actual acceptance, health professionals’ hesitancy, relatives’ hesitancy and actual refusal, which resulted in 82% of approached relatives to agree with MITS and 79% of cases to undergo MITS. Barriers to acceptability included, among others, health professionals’ and facilities’ unpreparedness to perform MITS, the threat of not burying the child immediately, financial burden of delays, decision-making complexities and misalignment of MITS’ objectives with family values. Conclusions MITS showed high anticipated and experienced acceptability driven by the opportunity to prevent further deaths. Anticipated acceptability identified secrecy, confidentiality and complex decision-making processes as barriers, while experienced acceptability revealed family- and health facility-level logistics and practical aspects as barriers. Health-system and logistical impediments must also be considered before MITS implementation. Additionally, the multiple components of acceptability must be taken into account to make it more consistent and transferrable.

Author(s):  
Anam Feroz ◽  
Anum Shiraz Ali ◽  
Mohsina Noor Ibrahim ◽  
Elizabeth M. McClure ◽  
Shiyam Sunder Tikmani ◽  
...  

Abstract Background Pakistan is considered to be one of the riskiest places in the world for childbirth as measured by its high stillbirth and neonatal mortality rates. Complete diagnostic autopsy remains the gold standard to determine the cause of death (CoD); however, it is not routinely implemented due to religious objections, sociocultural beliefs, limited resources and low demand from physicians and families. Recently, minimally invasive tissue sampling (MITS) using needle biopsies of multiple tissues to obtain tissue for histological examination and organism identification with PCR has been developed and promoted to determine CoD in low-resource areas. To ensure successful implementation of MITS, it is important to understand health professionals’ attitudes and perceptions related to MITS. Methods A qualitative study was conducted at the National Institute of Child Health (NICH), Karachi, Pakistan. Focus group discussions (FGDs) and Key-informant interviews (KIIs) were conducted with health professionals including doctors, nurses, trainees, clinicians, bioethics experts and public health experts to explore their perceptions and views on acceptability of MITS. Data were analyzed using NVivo 10 software. Results A total of 12 interviews (FGDs = 4; KIIs = 8) were conducted. Four overarching themes were identified: (I) acceptability of MITS; (II) perceived benefits of the MITS procedure; (III) factors facilitating the implementation of MITS; and (IV) health system requirements for implementing the MITS procedure. Generally, MITS was considered as a positive development for the health system. Diagnostic accuracy and identification of less common causes of death were highlighted as two main benefits of the MITS procedure. The study highlighted a number of facilitators for the acceptability of MITS including effective counseling, building trust with parents, fast procedure time, and approaching families within a few hours of death. In addition, lack of skilled staff, poorly equipped healthcare facilities and the potential high cost to conduct MITS were identified as challenges for the implementation of MITS. Conclusions This formative research provided a unique opportunity to explore health professionals’ views and attitudes towards the MITS procedure. Such insights are crucial to ensure successful implementation and integration of a new technique into the existing health system. The research identified the factors influencing the acceptability of MITS among health professionals in Pakistan. The study also informed factors that could help facilitate the implementation of the MITS procedures in the context of Pakistan and similar settings.


2020 ◽  
Author(s):  
Nina H Peterwerth ◽  
Margareta Halek ◽  
Sabrina Tulka ◽  
Rainhild Schäfers

BACKGROUND Risk perception plays an important role in decision-making processes. Differences in obstetric intervention rates suggest that, in addition to medical indications, the risk perception of obstetric health professionals might have a major influence on their decision-making process during childbirth. Although studies have investigated whether risk perception affects the role of midwifery or influences decision making during childbirth, little is known about what obstetric health professionals actually perceive as risk or risky situations and whether different risk perceptions lead to more interventions during intrapartum care. OBJECTIVE The objective of this study is to understand the association of risk perception and the decision-making processes of obstetric health professionals (midwives and obstetricians) in Germany during intrapartum care. The study has 3 specific aims: (1) gain insight into what obstetric health professionals perceive as risk in the German clinical setting, (2) assess the extent to which personal and systemic factors have an impact on obstetric health professionals’ risk perception, and (3) investigate whether different perceptions of risk are associated with different decisions being made by obstetric health professionals. METHODS This is an exploratory sequential mixed methods study with 2 phases, a qualitative followed by a quantitative phase. In the first phase, qualitative data are collected and analyzed by conducting focus group discussions and applying qualitative content analysis to address aim 1. In the second phase, for aims 2 and 3 and to help explain the qualitative results, quantitative data are collected and analyzed by conducting an observational study using case vignettes within a survey constructed on the basis of the qualitative results. RESULTS Enrollment in the first (qualitative) phase began in July 2019, and data collection and analysis have been completed. The second (quantitative) phase is currently planned, and data collection is expected to start in December 2020. First results of the qualitative phase are expected to be submitted for publication in 2020, with completion of the second phase scheduled for 2021. CONCLUSIONS This mixed methods study will examine the perception of risk and its association with the decision-making processes of obstetric health professionals during their care of women in childbirth. The rationale for this approach is that the qualitative data and their analysis explore participants' views in more depth, while the quantitative data will help to provide and explore a general understanding of the research problem. The results are expected to be relevant to health care professionals, policymakers, and educational institutions in order to minimize underuse, overuse, and misuse of interventions during intrapartum care. CLINICALTRIAL German Clinical Trials Register DRKS00017172; https://tinyurl.com/y2zoowkx INTERNATIONAL REGISTERED REPORT DERR1-10.2196/21443


BJGP Open ◽  
2021 ◽  
pp. BJGPO.2021.0100
Author(s):  
Neil Heron ◽  
Seán R O’Connor ◽  
Frank Kee ◽  
David R Thompson ◽  
Margaret Cupples ◽  
...  

BackgroundThe important role of primary care in promoting healthy lifestyle behaviours needs informed support.AimTo elicit views on a 39-item shared decision-making (SDM) aid (SHARE-D) for lifestyle change and refine it to improve implementation.Design & settingMixed methods study.MethodHealth professionals, patients, and support workers, with experience of managing, or a history of, cardio- or cerebrovascular disease, were purposively recruited based on age, gender, and urban/rural location (n = 34). Participants completed a survey, rating the importance of including each item in a decision-aid, designed for use by patients with health professionals, and suggesting modifications. Semi-structured interviews (n = 30/34) were conducted and analysed thematically.ResultsSubstantial agreement was observed on rating item inclusion. Based on survey and interview data, 9/39 items were removed; 13 were amended. Qualitative themes were: (i) core content of the decision-aid, (ii) barriers to use, (iii) motivation for lifestyle change, and (iv) primary care implementation. ‘Self-reflective’ questions and goal setting were viewed as essential components. The paper-based format, length, clarity, and time required were barriers to its use. Optional support considered within the aid was seen as important to motivate change. A digital version, integrated into patient record systems was regarded as critical to implementation. A revised 30-item aid was considered suitable for facilitating brief conversations and promoting patient autonomy.ConclusionThe SHARE-D decision aid for healthy lifestyle change appears to have good content validity and acceptability. Survey and interview data provided in-depth information to support implementation of a refined version. Further studies should examine its effectiveness.


10.2196/21443 ◽  
2020 ◽  
Vol 9 (11) ◽  
pp. e21443
Author(s):  
Nina H Peterwerth ◽  
Margareta Halek ◽  
Sabrina Tulka ◽  
Rainhild Schäfers

Background Risk perception plays an important role in decision-making processes. Differences in obstetric intervention rates suggest that, in addition to medical indications, the risk perception of obstetric health professionals might have a major influence on their decision-making process during childbirth. Although studies have investigated whether risk perception affects the role of midwifery or influences decision making during childbirth, little is known about what obstetric health professionals actually perceive as risk or risky situations and whether different risk perceptions lead to more interventions during intrapartum care. Objective The objective of this study is to understand the association of risk perception and the decision-making processes of obstetric health professionals (midwives and obstetricians) in Germany during intrapartum care. The study has 3 specific aims: (1) gain insight into what obstetric health professionals perceive as risk in the German clinical setting, (2) assess the extent to which personal and systemic factors have an impact on obstetric health professionals’ risk perception, and (3) investigate whether different perceptions of risk are associated with different decisions being made by obstetric health professionals. Methods This is an exploratory sequential mixed methods study with 2 phases, a qualitative followed by a quantitative phase. In the first phase, qualitative data are collected and analyzed by conducting focus group discussions and applying qualitative content analysis to address aim 1. In the second phase, for aims 2 and 3 and to help explain the qualitative results, quantitative data are collected and analyzed by conducting an observational study using case vignettes within a survey constructed on the basis of the qualitative results. Results Enrollment in the first (qualitative) phase began in July 2019, and data collection and analysis have been completed. The second (quantitative) phase is currently planned, and data collection is expected to start in December 2020. First results of the qualitative phase are expected to be submitted for publication in 2020, with completion of the second phase scheduled for 2021. Conclusions This mixed methods study will examine the perception of risk and its association with the decision-making processes of obstetric health professionals during their care of women in childbirth. The rationale for this approach is that the qualitative data and their analysis explore participants' views in more depth, while the quantitative data will help to provide and explore a general understanding of the research problem. The results are expected to be relevant to health care professionals, policymakers, and educational institutions in order to minimize underuse, overuse, and misuse of interventions during intrapartum care. Trial Registration German Clinical Trials Register DRKS00017172; https://tinyurl.com/y2zoowkx International Registered Report Identifier (IRRID) DERR1-10.2196/21443


Children ◽  
2021 ◽  
Vol 8 (12) ◽  
pp. 1095
Author(s):  
Naanlep Matthew Tanko ◽  
Ibrayimov Bakytkaly ◽  
Alpamys Issanov ◽  
Dimitri Poddighe ◽  
Milan Terzic

Complete diagnostic autopsy (CDA) remains the gold standard and a valuable technique for determining cause of death. It is a source of health statistics that can be used to measure health care services’ quality, unraveling important information on disease processes, particularly in emerging and unknown diseases. It can also be a vital tool for medical education and biomedical research. However, autopsy rates have been declining globally. There is an urgent need to develop and validate alternative methods in different settings to provide reliable information on cause of death. In this study, we aimed to determine cause of death (KazCoDe) in neonates and infants using minimally invasive tissue sampling (MITS), and to compare these results with those of CDA. We conducted MITS and CDA sequentially on 24 deceased children at the Pathological Bureau of the Akimat of the city of Nur-Sultan. Clinical data of the study subjects were extracted from their clinical records. During both procedures, brain, liver and lung tissues were collected for pathological diagnosis. Fifteen (62.5%) and nine (37.5%) were stillbirths and neonates, respectively. Eight (33.3%) were females and 16 (66.7%) were males. MITS diagnosis of cause of death was concordant with CDA diagnosis in 83.3% out of the 24 cases when considering the immediate and underlying causes of death and reviewing all the clinical and laboratory test results as part of the diagnostic evaluation to arrive at a cause of death (ICD-PM). We concluded that MITS is a valuable and reliable method for cause of death diagnosis in stillbirths and neonates, which can contribute vital mortality statistics in children in the absence of CDA.


2020 ◽  
Author(s):  
Marie Eggeling ◽  
Anna Meinhardt ◽  
Ulrike Cress ◽  
Joachim Kimmerle ◽  
Martina Bientzle

Objective: This study examined the influence of physicians’ recommendations and gender on the decision-making process in a preference-sensitive situation. Methods: N = 201 participants were put in a hypothetical scenario in which they suffered from a rupture of the anterior cruciate ligament (ACL). They received general information on two equally successful treatment options for this injury (surgery vs. physiotherapy) and answered questions regarding their treatment preference, certainty and satisfaction regarding their decision, and attitude toward the treatment options. Then participants watched a video that differed regarding physician’s recommendation (surgery vs. physiotherapy) and physician’s gender (female vs. male voice and picture). Afterward, they indicated again their treatment preference, certainty, satisfaction, and attitude, as well as the physician’s professional and social competence.Results: Participants changed their treatment preferences in the direction of the physician’s recommendation (P<.001). Decision certainty (P<.001) and satisfaction (P<.001) increased more strongly if the physician’s recommendation was congruent with the participant’s prior attitude than if the recommendation was contrary to the participant’s prior attitude. Finally, participants’ attitudes toward the recommended treatment became more positive (surgery recommendation: P<.001; physiotherapy recommendation: P<.001). We found no influence of the physician’s gender on participants’ decisions, attitudes, or competence assessments.Conclusion: This research indicates that physicians should be careful with recommendations when aiming for shared decisions, as they might influence patients even if the patients have been made aware that they should take their personal preferences into account. This could be particularly problematic if the recommendation is not in line with the patient’s preferences.


2019 ◽  
Author(s):  
Amelia Hyatt ◽  
Ruby Lipson-Smith ◽  
Bryce Morkunas ◽  
Meinir Krishnasamy ◽  
Michael Jefford ◽  
...  

BACKGROUND Health care systems are increasingly looking to mobile device technologies (mobile health) to improve patient experience and health outcomes. SecondEars is a smartphone app designed to allow patients to audio-record medical consultations to improve recall, understanding, and health care self-management. Novel health interventions such as SecondEars often fail to be implemented post pilot-testing owing to inadequate user experience (UX) assessment, a key component of a comprehensive implementation strategy. OBJECTIVE This study aimed to pilot the SecondEars app within an active clinical setting to identify factors necessary for optimal implementation. Objectives were to (1) investigate patient UX and acceptability, utility, and satisfaction with the SecondEars app, and (2) understand health professional perspectives on issues, solutions, and strategies for effective implementation of SecondEars. METHODS A mixed methods implementation study was employed. Patients were invited to test the app to record consultations with participating oncology health professionals. Follow-up interviews were conducted with all participating patients (or carers) and health professionals, regarding uptake and extent of app use. Responses to the Mobile App Rating Scale (MARS) were also collected. Interviews were analyzed using interpretive descriptive methodology; all quantitative data were analyzed descriptively. RESULTS A total of 24 patients used SecondEars to record consultations with 10 multidisciplinary health professionals. In all, 22 of these patients used SecondEars to listen to all or part of the recording, either alone or with family. All 100% of patient participants reported in the MARS that they would use SecondEars again and recommend it to others. A total of 3 themes were identified from the patient interviews relating to the UX of SecondEars: empowerment, facilitating support in cancer care, and usability. Further, 5 themes were identified from the health professional interviews relating to implementation of SecondEars: changing hospital culture, mitigating medico-legal concerns, improving patient care, communication, and practical implementation solutions. CONCLUSIONS Data collected during pilot testing regarding recording use, UX, and health professional and patient perspectives will be important for designing an effective implementation strategy for SecondEars. Those testing the app found it useful and felt that it could facilitate the benefits of consultation recordings, along with providing patient empowerment and support. Potential issues regarding implementation were discussed, and solutions were generated. CLINICALTRIAL Australia and New Zealand Clinical Trials Registry ACTRN12618000730202; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373915&isClinicalTrial=False


2020 ◽  
Author(s):  
Shuma Gosha Kanfe ◽  
Nebyu Demeke Mengiste ◽  
Mohammedjud Hassen Ahmed ◽  
Gebiso Roba Debele ◽  
Berhanu Fikadie Endehabtu

BACKGROUND Evidence based practice is a key to increase effectiveness and efficiency of quality health services. To achieve this, utilization of health facility data (DHIS2 data) is required which is determined by knowledge and attitudes of health professionals. Thus, this study aimed to assess knowledge and attitudes of health professionals to use DHIS2 data for decision making. OBJECTIVE This study aimed to assess the knowledge, attitudes and its associated factors among health professionals to use DHIS2 data for decision making at South west of Ethiopia 2020 METHODS Cross sectional quantitative study methods was conducted to assess Knowledge and Attitudes of health professionals to use DHIS2 data. A total of 264 participants were approached. SPSS version 22 software was used for data entry and analysis. Descriptive and analytical statistics including Bivariable and Multivariable analyses was done RESULTS Overall 130(49.2%) of the respondents had good knowledge to use DHIS2 data (95% CI: [43, 55.3]), whereas over 149 (56.4%) of the respondents had favorable attitudes towards the use of DHIS2 data for decision making purpose (95% CI: [53.2, 59.8]). Skills [AOR=2.20,95% CI:(1.16, 4.19)], Age [AOR= 1.92, 95% CI: (1.03, 3.59)] ,Resources[AOR=2.56, 95% CI:(1.35,4.86)], Staffing[AOR= 2.85, 95% CI : (1.49, 5.48)] and Experiences[AOR= 4.66, 95% CI: (1.94, 5.78)] were variables associated with knowledge to use DHIS2 data whereas Training [AOR= 5.59, 95% CI: (2.48, 5.42)], Feedback [AOR= 4.08, 95% CI: (1.87, 8.91)], Motivation [AOR=2.87, 95% CI: (1.36, 6.06)] and Health need [AOR=2.32, 95% CI: (1.10-4.92)] were variables associated with attitudes of health professionals to use DHIS2 data CONCLUSIONS In general, about half of the study participants had good knowledge of DHIS2 data utilization whereas more than half of respondents had favorable attitudes. Skills, resources, ages, staffing and experiences were the most determinant factors for the knowledge to use DHIS2 data whereas health need, motivation, feedback and training were determinant factors for attitudes to use DHIS2 data


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