scholarly journals Using video in childbirth research

2015 ◽  
Vol 24 (2) ◽  
pp. 177-189 ◽  
Author(s):  
J Davis Harte ◽  
Caroline SE Homer ◽  
Athena Sheehan ◽  
Nicky Leap ◽  
Maralyn Foureur
Keyword(s):  
Video Recording ◽  
Research Process ◽  
Ethics Committee ◽  
Ethnographic Study ◽  
Australian Health ◽  
Healthcare Settings ◽  
Video Research ◽  
Unit Design ◽  
Ethical Approval ◽  
Randomised Controlled

Background: Conducting video-research in birth settings raises challenges for ethics review boards to view birthing women and research-midwives as capable, autonomous decision-makers. Aim: This study aimed to gain an understanding of how the ethical approval process was experienced and to chronicle the perceived risks and benefits. Research design: The Birth Unit Design project was a 2012 Australian ethnographic study that used video recording to investigate the physical design features in the hospital birthing space that might influence both verbal and non-verbal communication and the experiences of childbearing women, midwives and supporters. Participants and research context: Six women, 11 midwives and 11 childbirth supporters were filmed during the women’s labours in hospital birth units and interviewed 6 weeks later. Ethical considerations: The study was approved by an Australian Health Research Ethics Committee after a protracted process of negotiation. Findings: The ethics committee was influenced by a traditional view of research as based on scientific experiments resulting in a poor understanding of video-ethnographic research, a paradigmatic view of the politics and practicalities of modern childbirth processes, a desire to protect institutions from litigation, and what we perceived as a paternalistic approach towards protecting participants, one that was at odds with our aim to facilitate situations in which women could make flexible, autonomous decisions about how they might engage with the research process. Discussion: The perceived need for protection was overly burdensome and against the wishes of the participants themselves; ultimately, this limited the capacity of the study to improve care for women and babies. Conclusion: Recommendations are offered for those involved in ethical approval processes for qualitative research in childbirth settings. The complexity of issues within childbirth settings, as in most modern healthcare settings, should be analysed using a variety of research approaches, beyond efficacy-style randomised controlled trials, to expand and improve practice-based results.

Ethical issues in family violence research in healthcare settings

2013 ◽  
Vol 21 (1) ◽  
pp. 43-52 ◽  
Author(s):  
Eija Paavilainen ◽  
Sari Lepistö ◽  
Aune Flinck
Keyword(s):  
Family Violence ◽  
Partner Violence ◽  
Ethical Issues ◽  
Research Process ◽  
Ethical Standards ◽  
Research Experiences ◽  
Participant Recruitment ◽  
Healthcare Settings ◽  
Ethical Approval ◽  
Definition Of

Research ethics is always important. However, it is especially crucial with sensitive research topics such as family violence. The aim of this article is to describe and discuss some crucial issues regarding intimate partner violence and child maltreatment, based on the authors’ own research experiences. We focus on and discuss examples concerning the definition of family violence, research design, ethical approval, participant recruitment and safety and data collection and processing. During the research process, the significance of teamwork is emphasized. Support provided by the participants to each other and support given by experienced researchers within the team is very important for high ethical standards.

scholarly journals Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e042726
Author(s):  
Stefan Nilsson ◽  
Angelica Wiljén ◽  
Jonas Bergquist ◽  
John Chaplin ◽  
Ensa Johnson ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Research Process ◽  
Crossover Design ◽  
Self Report ◽  
Ethical Review ◽  
High Dose ◽  
Digital Tool ◽  
Legal Guardians ◽  
Ethical Approval

IntroductionThis study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5–17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysisBoth effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child’s perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and disseminationEthical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council’s guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registrationClinicalTrials.gov; NCT04433650.

Ethical and culturally competent care of transgender patients: A scoping review

2021 ◽  
pp. 096973302098830
Author(s):  
Amara Sundus ◽  
Sharoon Shahzad ◽  
Ahtisham Younas
Keyword(s):  
Scoping Review ◽  
Healthcare Professionals ◽  
Culturally Sensitive ◽  
Culturally Competent ◽  
Culturally Competent Care ◽  
Individual Level ◽  
Culturally Sensitive Care ◽  
Healthcare Settings ◽  
Ethical Approval ◽  
Sensitive Issues

Background: Transgender individuals experience discrimination, stigmatization, and unethical and insensitive attitudes in healthcare settings. Therefore, healthcare professionals must be knowledgeable about the ways to deliver ethical and culturally competent care. Ethical considerations: No formal ethical approval was required. Aim: To synthesize the literature and identify gaps about approaches to the provision of ethical and culturally competent care to transgender populations. Design: A Scoping Review Literature Search: Literature was searched within CINAHL, Science Direct, PubMed, Google Scholar, EMBASE, and Scopus databases using indexed keywords such as “transgender,” “gender non-conforming,” “ethically sensitive care,” and “culturally sensitive care.” In total, 30 articles, which included transgender patients and their families and nurses, doctors, and health professionals who provided care to transgender patients, were selected for review. Data were extracted and synthesized using tabular and narrative summaries and thematic synthesis. Findings: Of 30 articles, 23 were discussion papers, 5 research articles, and 1 each case study and an integrative review. This indicates an apparent dearth of literature about ethical and culturally sensitive care of transgender individuals. The review identified that healthcare professionals should educate themselves about sensitive issues, become more self-aware, put transgender individual in charge during care interactions, and adhere to the principles of advocacy, confidentiality, autonomy, respect, and disclosure. Conclusions: The review identified broad approaches for the provision of ethical and culturally competent care. The identified approaches could be used as the baseline, and further research is warranted to develop and assess organizational and individual-level approaches.

Pagdihon: The Art and Language of Pottery Making in Bari, Sibalom, Antique

2020 ◽  
Author(s):  
Edbert Jay M. Cabrillos ◽  
◽  
Rowena S. Cabrillos ◽  
Keyword(s):  
Participant Observation ◽  
Video Recording ◽  
Ethnographic Study ◽  
The Other ◽  
Educational Institutions ◽  
Face To Face ◽  
Factors Influencing ◽  
Photo Documentation ◽  
Language Pattern ◽  
Art And Language

Pottery is seen as creation of ornamentals, cooking and storing materials. Yet, while economic gains are often considered from producing these materials, the artistic and linguistic aspects have been ignored. This study discusses the factors influencing the culture of pottery, the processes of pottery making, and seeks to uncover the language used in processes of pottery making in Bari, Sibalom, Antique. A qualitative research employing ethnographic study with participant observation and face to face interviews using photo documentation, video recording and open-ended questions in gathering the data was employed. There were five manugdihon, or potters, purposively selected as key informants of the study. The study revealed that environmental factors influenced the culture of pottery making in the barangay. There were seven main processes in pottery making. These included gathering and preparing of materials, mixing the needed materials, cleaning the mixed clay, forming of desired shape, detaching, drying, and polishing and varnishing. Further findings indicate that, together the other processes, the language used in poterry making was archaic Kinaray-a, the language of the province. This language pattern suggests a specialized pottery making. Ultimately, the study suggest that the manugdihon should continue their artistic talents so that the language may be preserved. The educational institutions of the province may provide ways to include pottery making in the curriculum so that the art and language of pottery making will be preserved and promoted.

scholarly journals Dismembering organisation: The coordination of algorithmic work in healthcare

2020 ◽  
Vol 68 (4) ◽  
pp. 546-571
Author(s):  
Simon Bailey ◽  
Dean Pierides ◽  
Adam Brisley ◽  
Clara Weisshaar ◽  
Tom Blakeman
Keyword(s):  
Acute Kidney Injury ◽  
Kidney Injury ◽  
Human Experience ◽  
Ethnographic Study ◽  
Care Work ◽  
Healthcare Settings ◽  
Expected Performance ◽  
Sociological Literature ◽  
Insight Into

Algorithms are increasingly being adopted in healthcare settings, promising increased safety, productivity and efficiency. The growing sociological literature on algorithms in healthcare shares an assumption that algorithms are introduced to ‘support’ decisions within an interactive order that is predominantly human-oriented. This article presents a different argument, calling attention to the manner in which organisations can end up introducing a non-negotiable disjuncture between human-initiated care work and work that supports algorithms, which the authors call algorithmic work. Drawing on an ethnographic study, the authors describe how two hospitals in England implemented an Acute Kidney Injury (AKI) algorithm and analyse ‘interruptions’ to the algorithm’s expected performance. When the coordination of algorithmic work occludes care work, the study finds a ‘dismembered’ organisation that is algorithmically-oriented rather than human-oriented. In the discussion, the authors examine the consequences of coordinating human and non-human work in each hospital and conclude by urging sociologists of organisation to attend to the importance of the formal in algorithmic work. As the use of algorithms becomes widespread, the analysis provides insight into how organisations outside of healthcare can also end up severing tasks from human experience when algorithmic automation is introduced.

Ethics and the Ruling Relations of Research Production

2003 ◽  
Vol 8 (1) ◽  
pp. 70-80 ◽  
Author(s):  
Carole Truman
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Research Process ◽  
Research Governance ◽  
Community Mental Health Service ◽  
Moral Obligations ◽  
Research Participants ◽  
Research Production ◽  
Health And Social Care ◽  
Ethical Approval

The role of research ethics committees has expanded across the UK and North America and the process of ethical review has become re-institutionalised under proposals for research governance proposed by government. Ethics committees have gained a powerful role as gatekeepers within the research process. Underpinning the re-constitution of ethical guidelines and research governance, are a range of measures which protect institutional interests, without necessarily providing an effective means to address the moral obligations and responsibilities of researchers in relation to the production of social research. Discussion of research ethics from the standpoint of research participants who in this paper, are service users within health and social care, provides a useful dimension to current debate. In this paper I draw upon experiences of gaining ethical approval for a research study which focused on user participation within a community mental health service. I discuss the strategies used to gain ethical approval and the ‘formal concerns’ raised by the ethics committee. I then describe and discuss ethical issues which emerged from a participants’ perspective during the actual research as it was carried out. These experiences are analysed using aspects of institutional ethnography which provides a framework to explore how the experiences of research participants are mediated by texts which govern the processes of research production. The paper highlights incongruities between the formal ethical regulation of research, and the experiences of research participants in relation to ethical concerns within a research process.

scholarly journals Effectiveness and cost of integrating a pragmatic pathway for prescribing liraglutide 3.0 mg in obesity services (STRIVE study): study protocol of an open-label, real-world, randomised, controlled trial

BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e034137 ◽  
Author(s):  
Dimitris Papamargaritis ◽  
Werd Al-Najim ◽  
Jonathan Lim ◽  
James Crane ◽  
Mike Lean ◽  
...  
Keyword(s):  
Weight Loss ◽  
Randomised Controlled Trial ◽  
Research Ethics ◽  
Real World ◽  
Regulatory Authority ◽  
Controlled Trial ◽  
Ethics Committee ◽  
Stopping Rules ◽  
Open Label ◽  
Randomised Controlled

IntroductionIn the UK and Ireland, severe and complex obesity is managed in specialist weight management services (SWMS), which provide multicomponent lifestyle interventions to support weight loss, and use of medication if available. Liraglutide 3 mg (LIRA 3 mg) is an effective weight-loss medication, but weight loss in individual patients is variable, and its efficacy has not been assessed in SWMS. This study aims to investigate whether a targeted prescribing pathway for LIRA 3 mg with multiple prespecified stopping rules could help people with severe obesity and established complications achieve ≥15% weight loss in order to determine whether this could be considered a clinically effective and cost-effective strategy for managing severe and complex obesity in SWMS.Methods and analysisIn this 2-year, multicentre, open-label, real-world randomised controlled trial, 384 adults with severe and complex obesity (defined as body mass index ≥35 kg/m2plus either prediabetes, type 2 diabetes, hypertension or sleep apnoea) will be randomised via a 2:1 ratio to receive either standard SWMS care (n=128) or standard SWMS care plus a targeted prescribing pathway for LIRA 3 mg with prespecified stopping rules at 16, 32 and 52 weeks (n=256).The primary outcome is to compare the proportion of participants achieving a weight loss of ≥15% at 52 weeks with a targeted prescribing pathway versus standard care. Secondary outcomes include a comparison of (1) the weight loss maintenance at 104 weeks and (2) the budget impact and cost effectiveness between the two groups in a real-world setting.Ethics and disseminationThe Health Research Authority and the Medicines and Healthcare products Regulatory Authority in UK, the Health Products Regulatory Authority in Ireland, the North West Deanery Research Ethics Committee (UK) and the St Vincent’s University Hospital European Research Ethics Committee (Ireland) have approved the study. The findings of the study will be published in peer-reviewed journals.Trial registration numberClinicalTrials.gov—Identifier:NCT03036800.European Clinical Trials Database—Identifier: EudraCT Number 2017-002998-20.

scholarly journals Recruitment And Retention Of Participants From Socioeconomically Deprived Communities: Lessons From The Awareness And Beliefs About Cancer (ABACus3) Randomised Controlled Trial

2020 ◽  
Author(s):  
Vasiliki Kolovou ◽  
Yvonne Moriarty ◽  
Stephanie Gilbert ◽  
Harriet Quinn-Scoggins ◽  
Julia Townson ◽  
...  
Keyword(s):  
Financial Incentives ◽  
Controlled Trial ◽  
Qualitative Interviews ◽  
Randomised Control Trial ◽  
Trial Participant ◽  
Community Settings ◽  
Research Strategies ◽  
Healthcare Settings ◽  
Randomised Controlled ◽  
Deprived Areas

Abstract Background Recruitment of research participants poses challenges in socioeconomically deprived areas. The Awareness and Beliefs About Cancer (ABACus) phase 3 Randomised Control Trial recruited adult participants from socioeconomically deprived areas using a combined healthcare/community engagement model. We report the strategies used to successfully recruit and retain our trial participant sample. Methods Community and healthcare settings in areas of high socioeconomic deprivation were identified by lay advisors who recruited participants opportunistically or by appointment. Follow-up was done by telephone or post at 2-weeks and 6-months after recruitment, and all participants were offered financial incentives. Qualitative interviews were conducted with lay advisors regarding their experience and reflections. Results The lay advisors identified and contacted 107 potential recruitment venues across South and West Yorkshire and South East Wales of which 41.1% (n = 42) were opened for recruitment. A total of 234 participants were recruited, with 91% (n = 212) retention at 2-weeks and 85% (n = 199) at 6-months. Community settings yielded 75% (n = 176) of participants. Participants had a mean age of 61.3 years and 63.3% (n = 148) were female, with 66% (n = 154) resident in the most deprived geographical areas. Lay advisors described recruitment as intensive, although engaging participants was easier in community settings. Conclusions The ABACus3 trial achieved recruitment and high retention with a population that is often “hard to reach” or entirely missed in health research. Strategies were specifically tailored to engage the venues and adult residents of highly deprived areas. Future studies recruiting adults living in the most deprived areas might benefit from community recruitment and from collaborating with local gatekeepers who are key to engagement.

scholarly journals Organising polypharmacy: unpacking medicines, unpacking meanings—an ethnographic study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e049218
Author(s):  
Deborah Swinglehurst ◽  
Nina Fudge
Keyword(s):  
Video Recording ◽  
Ethnographic Study ◽  
Ethnographic Case Study ◽  
Pharmacy Staff ◽  
General Practices ◽  
Telephone Calls ◽  
Do It Yourself ◽  
Point Of Departure

ObjectivesWe explore how older patients affected by polypharmacy manage the ‘hidden work’ of organising their medicines, how they make sense of this work and integrate it into their lives.Design and settingEthnographic study observing patients over 18–24 months in patients’ homes, general practice and community pharmacy, in England, UK.Participants and methodsEthnographic case study including longitudinal follow-up of 24 patients aged 65 or older and prescribed ten or more items of medication. Our dataset includes: 562 hours of ethnographic observation across patients homes, community pharmacies and general practices; 47 audio-recorded interviews with patients about their lives and medicines practices; cultural probes (photographs, body maps, diaries and imagined ‘wishful thinking’ conversations); fieldnotes from regular home visits; telephone calls, and observation/video-recording of healthcare encounters. We apply a ‘practice theory’ lens to our analysis, illuminating what is being accomplished, why and by whom.ResultsAll patients had developed strategies and routines for organising medicines into their lives, negotiating medicine taking to enable acceptable adherence and make their medicines manageable. Strategies adopted by patients often involved the use of ‘do-it-yourself’ dosette boxes. This required careful ‘organising’ work similar to that done by pharmacy staff preparing multicompartment compliance aids (MCCAs). Patients incorporated a range of approaches to manage supplies and flex their regimens to align with personal values and priorities. Practices of organising medicines are effortful, creative and often highly collaborative. Patients strive for adherence, but their organisational efforts privilege ‘living with medicines’ over taking medicines strictly ‘as prescribed’.ConclusionsPolypharmacy demands careful organising. The burden of organising polypharmacy always falls somewhere, whether undertaken by pharmacists as they prepare MCCAs or by patients at home. Greater appreciation among prescribers of the nature and complexity of this work may provide a useful point of departure for tackling the key issue that sustains it: polypharmacy.

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