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.

scholarly journals A Clash of Paradigms? Ethnography and Ethics Approval

SAGE Open ◽  
2017 ◽  
Vol 7 (1) ◽  
pp. 215824401769716 ◽  
Author(s):  
Virginia Mapedzahama ◽  
Tinashe Dune
Keyword(s):  
Structural Changes ◽  
Social Research ◽  
Ethics Committees ◽  
Research Process ◽  
Ethical Review ◽  
Ethnographic Research ◽  
Rural Nursing ◽  
Research Relationship ◽  
Ethical Approval ◽  
Ethics Guidelines

Obtaining ethics approval from university ethics committees is an important part of the research process in Australia and internationally. However, for researchers engaging in ethnographic work, obtaining ethics approval can (re)present significant hurdles to overcome in planning and facilitating a research project. In this article, we discuss potential challenges of reconciling the differences between institutional ethical review standards and the reality of ethnographic research. To do so, we reflect on our own experiences seeking ethics approval for a study on racialized visibility in rural nursing and another on the experiences of gender and sexuality diverse older women. We focus on two particular queries from ethics committees that reaffirm, for us, the incompatibility of biomedically informed ethics guidelines for naturalistic, ethnographic research. The article draws on four major points of contention regarding ethical approval processes designed for biomedical research and applied to social research. With respect to social research, these are (a) the associated risks, (b) predictive informed consent, (c) the power held by social researchers, and (d) biomedical emphasis on distance and universalism within the research relationship. This article suggests a reformulation of ethics guidelines and structures such that ethics committees are better able to engage with ethnographic (and other social) research. Although these debates and structural changes may not be relevant for all social or ethnographic research, exploring these ethical difficulties is paramount to redefining expectations and the positivist standards upon which social research is often measured.

scholarly journals Effect of mindfulness on physical activity in primary healthcare patients: a randomised controlled trial pilot study

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Peter Nymberg ◽  
Susanna Calling ◽  
Emelie Stenman ◽  
Karolina Palmér ◽  
Eva Ekvall Hansson ◽  
...  
Keyword(s):  
Physical Activity ◽  
Study Design ◽  
Controlled Trial ◽  
Dropout Rate ◽  
Activity Monitor ◽  
Activity Level ◽  
Self Report ◽  
Ethical Review ◽  
Mixed Effect ◽  
Registration Number

Abstract Increased physical activity can have health benefits among inactive individuals. In Sweden, the healthcare system uses physical activity on prescription (PAP) to motivate patients to increase their physical activity level. Mindfulness may further heighten the internal motivation to engage in physical activity. However, previous research has not demonstrated clear evidence of such an association. Aim Examine the feasibility of the study design as a preparation for a full-scale study, and examine the differences, between three interventions, in change over time in physical activity levels and in related variables. Method Comparison between three different interventions in an ordinary primary health care setting: PAP, mindfulness, and a combination of PAP and mindfulness. Physical activity was measured with self-report and ACTi Graph GT1X activity monitor. Statistical analysis was performed with a mixed-effect model to account for repeated observations and estimate differences both within groups and between groups at 3- and 6-months follow-up. Results Between September 2016 and December 2018, a total of 88 participants were randomised into three groups. The total dropout rate was 20.4%, the attendance rate to the mindfulness courses (52% > 6 times) and the web-based mindfulness training (8% > 800 min) was low according to the stated feasibility criteria. Eleven participants were excluded from analysis due to low activity monitor wear time. Neither the activity monitor data nor self-reported physical activity showed any significant differences between the groups. Conclusion The study design needs adjustment for the mindfulness intervention design before a fully scaled study can be conducted. A combination of PAP and mindfulness may increase physical activity and self-rated health more than PAP or mindfulness alone. Trial registration ClinicalTrials.gov, registration number NCT02869854. Regional Ethical Review Board in Lund registration number 2016/404.

scholarly journals Reporting ethical approval in health and social science articles: an audit of adherence to GDPR and national legislation

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Kjell Asplund ◽  
Kerstin Hulter Åsberg
Keyword(s):  
Social Sciences ◽  
Social Science ◽  
Social Science Research ◽  
Personal Data ◽  
Science Research ◽  
Health Sciences ◽  
Health Science ◽  
Ethical Review ◽  
General Data Protection Regulation ◽  
Ethical Approval

Abstract Background Previous studies have indicated that failure to report ethical approval is common in health science articles. In social sciences, the occurrence is unknown. The Swedish Ethics Review Act requests that sensitive personal data, in accordance with the EU General Data Protection Regulation (GDPR), should undergo independent ethical review, irrespective of academic discipline. We have explored the adherence to this regulation. Methods Using the Web of Science databases, we reviewed 600 consecutive articles from three domains (health sciences with and without somatic focus and social sciences) based on identifiable personal data published in 2020. Results Information on ethical review was lacking in 12 of 200 health science articles with somatic focus (6%), 21 of 200 health science articles with non-somatic focus (11%), and in 54 of 200 social science articles (27%; p < 0.001 vs. both groups of health science articles). Failure to report on ethical approval was more common in (a) observational than in interventional studies (p < 0.01), (b) articles with only 1–2 authors (p < 0.001) and (c) health science articles from universities without a medical school (p < 0.001). There was no significant association between journal impact factor and failure to report ethical approval. Conclusions We conclude that reporting of research ethics approval is reasonably good, but not strict, in health science articles. Failure to report ethical approval is about three times more frequent in social sciences compared to health sciences. Improved adherence seems needed particularly in observational studies, in articles with few authors and in social science research.

The Surprise Question and Serious Illness Conversations: A pilot study

2021 ◽  
pp. 096973302098339
Author(s):  
Kathy Le ◽  
Jenny Lee ◽  
Sameer Desai ◽  
Anita Ho ◽  
Holly van Heukelom
Keyword(s):  
Pilot Study ◽  
Healthcare Professionals ◽  
Post Intervention ◽  
Acute Medicine ◽  
Serious Illness ◽  
Patient Goals ◽  
Ethical Approval ◽  
Seriously Ill Patients ◽  
Surprise Question ◽  
Seriously Ill

Background: Serious Illness Conversations aim to discuss patient goals. However, on acute medicine units, seriously ill patients may undergo distressing interventions until death. Objectives: To investigate the feasibility of using the Surprise Question, “Would you be surprised if this patient died within the next year?” to identify patients who would benefit from early Serious Illness Conversations and study any changes in the interdisciplinary team’s beliefs, confidence, and engagement as a result of asking the Surprise Question. Design: A prospective cohort pilot study with two Plan-Do-Study-Act cycles. Participants/context: Fifty-eight healthcare professionals working on Acute Medicine Units participated in pre- and post-intervention questionnaires. The intervention involved asking participants the Surprise Question for each patient. Patient charts were reviewed for Serious Illness Conversation documentation. Ethical considerations: Ethical approval was granted by the institutions involved. Findings: Equivocal overall changes in the beliefs, confidence, and engagement of healthcare professionals were observed. Six out of 23 patients were indicated as needing a Serious Illness Conversation; chart review provided some evidence that these patients had more Serious Illness Conversation documentation compared with the 17 patients not flagged for a Serious Illness Conversation. Issues were identified in equating the Surprise Question to a Serious Illness Conversation. Discussion: Appropriate support for seriously ill patients is both a nursing professional and ethical duty. Flagging patients for conversations may act as a filtering process, allowing healthcare professionals to focus on conversations with patients who need them most. There are ethical and practical issues as to what constitutes a “serious illness” and if answering “no” to the Surprise Question always equates to a conversation. Conclusion: The barriers of time constraints and lack of training call for institutional change in order to prioritise the moral obligation of Serious Illness Conversations.

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.

scholarly journals ‘Should I Stay, or Should I Go?’ Psychological Distress Predicts Career Change Ideation among Intensive Care Staff in Lithuania and the UK Amid COVID-19 Pandemic

2021 ◽  
Vol 18 (5) ◽  
pp. 2660
Author(s):  
Ieva Norkiene ◽  
Lina Jovarauskaite ◽  
Monika Kvedaraite ◽  
Encarl Uppal ◽  
Mandeep Kaur Phull ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Healthcare Professionals ◽  
Psychosocial Support ◽  
Career Change ◽  
Well Being ◽  
Self Report ◽  
Care Staff ◽  
Psychological Well Being ◽  
The United Kingdom ◽  
The Uk

The COVID-19 pandemic had a significant effect on healthcare globally. Additional pressure created by coronavirus adversely affected the mental health and psychological well-being of healthcare workers, leading many to question their desire and willingness to continue working in healthcare. This study aimed to identify predictors for career change ideation among healthcare professionals in two countries; Lithuania and the United Kingdom amid the coronavirus pandemic. In total, 610 healthcare professionals from Lithuania and the UK (285 and 325, respectively) participated in a survey from May to August 2020. Psychological distress and psychological well-being were measured using the self-report scales “DASS-21” and “WHO-5”. Almost half of the sample (49.2%), 59.6% and 40.0% in Lithuanian and the UK, respectively, exhibited career change ideation, the country effect was significant (AOR = 2.21, p < 0.001). Stronger ideation to leave healthcare was predicted by higher levels of depression (AOR = 1.10, p = 0.005), stress (AOR = 1.10, p = 0.007), anxiety surrounding inadequate personal protective equipment (AOR = 2.27, p = 0.009), and lower psychological well-being scores (AOR = 1.10, p = 0.007). We conclude that psychosocial support must be provided for healthcare professionals to prevent burnout and loss of staff amid the pandemic.

scholarly journals Psychosocial, emotional and professional challenges faced by female healthcare professionals during the COVID-19 outbreak in Lahore, Pakistan: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sumbal Shahbaz ◽  
Muhammad Zeshan Ashraf ◽  
Rubeena Zakar ◽  
Florian Fischer
Keyword(s):  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Working Environment ◽  
Cultural Issues ◽  
Self Reflection ◽  
Professional Challenges ◽  
Proper Training ◽  
Phenomenological Methodology ◽  
Novel Coronavirus ◽  
And Coping

Abstract Background The novel coronavirus disease (COVID-19) is spreading rapidly, increasing the stress and challenges for healthcare professionals around the world. This study aims to discover the psychosocial, emotional and professional challenges faced by female healthcare professionals (HCPs) treating COVID-19 patients in Pakistan. Methods Using an empirical phenomenological methodology, semi-structured telephone-based qualitative interviews were conducted with 22 female HCPs who were providing their expertise for COVID-19 patients in tertiary-level hospitals in Lahore, Pakistan. Purposive sampling was used for recruitment. The interviews were conducted between 20 July and 20 August 2020. The interviews were analysed using thematic analysis. Results This study explored the psychosocial, emotional and professional challenges faced by female HCPs serving COVID-19 patients. Five themes were observed in the interviews: apprehension while treating COVID-19 patients; feelings towards COVID-19 patients; challenges as female HCPs and coping strategies; confidence in government, administration and self-reflection; and finally, future concerns and recommendations. Many of these themes have also been linked with cultural issues, making the results specific to Pakistan. Conclusions During the COVID-19 pandemic, female frontline HCPs have faced immense psychosocial pressure, ranging from unsupportive family norms to an unwelcoming working environment and insensitive hospital administrations. Moreover, rumours among the general public, lack of proper training, missing incentives and improper system surveillance have increased the anxiety and stress among HCPs. Hence, legislators are advised to take appropriate actions countrywide in order to alleviate the still ongoing challenges and support female HCPs in their working environment.

scholarly journals A Qualitative Evaluation of Adverse Drug Reaction Reporting System in Pakistan: Findings from the Nurses’ Perspective

2020 ◽  
Vol 17 (9) ◽  
pp. 3039
Author(s):  
Rabia Hussain ◽  
Mohamed Azmi Hassali ◽  
Anees ur Rehman ◽  
Jaya Muneswarao ◽  
Muhammad Atif ◽  
...  
Keyword(s):  
Adverse Drug Reaction ◽  
Drug Reaction ◽  
Healthcare Professionals ◽  
Reporting System ◽  
Adverse Drug Reaction Reporting ◽  
Qualitative Interviews ◽  
Qualitative Evaluation ◽  
Adr Reporting ◽  
Willingness To Report ◽  
And Training

The contribution of all key healthcare professionals is vital to promote an efficient adverse drug reaction (ADR) reporting system. In this context, nurses are important as they are in a better position to observe a patient’s response regarding the drug therapy and to report an ADR. The aim of the study was to explore the perspectives of nurses about ADR reporting system in Lahore, Pakistan. A total of 21 nurses were interviewed. The thematic content analysis of the qualitative interviews yielded six major themes and eight subthemes. Major themes included: (1) Knowledge about the concept of the medication safety & the ADR; (2) Knowledge regarding pharmacovigilance activities; (3) Willingness to report; (4) Practices related to the ADR reporting; (5) Barriers to the ADR reporting; (6) Facilitators to the ADR reporting. The majority of the nurses were aware of medicine safety and ADRs, but in many cases, they were unable to report these ADRs. The study pointed out considerable concerns regarding the knowledge and practices of nurses about pharmacovigilance activities in their workplace, mainly due to increased workload, due to the absence of a reporting system and legal liability. The main challenges turned out to be the lack of knowledge and training, as well as the implementation of guidelines. Based on the findings, it is suggested that outcome of this study can serve as a guide to design policies that support ADR reporting by nurses in Pakistan.

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.

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