Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey
Clinical Research Article
Shanshan Qiu, Yang Xia, Feng Tian, Yanfang Yang, Jijun Song, Liqin Chen, Hao Mei, Fan Jiang, Nan Bao, Shijian Liu
Pediatric Research, 17 November 2020
Abstract
Objective
The aim of the study was to evaluate the effectiveness of an audio and animated cartoon questionnaire (AACQ) at improving consent process in child for biospecimen donation.
Methods
A multi-center randomized and controlled survey was performed at two pediatric hospitals in China from 2019 to 2020. Children aged from 7 to 18 years in the pediatric surgery wards were invited to investigate the participants’ willingness and attitudes for donating biospecimens. A total of 264 children, including 119 in the AACQ group and 145 in the TQ group, and 67 parents of children were analyzed. A separate knowledge test was acquired in the questionnaires.
Results
Our findings showed that the response rate of the AACQ group (89.85%) was significantly higher than that of the TQ group (68.44%; p < 0.001). AACQ can improve the child’s understanding, increase children’s engagement in biospecimen donation, reduced the differences in selected characteristics affecting children understanding, and enhanced their risk awareness of donating biospecimens. We also found that increasing pain and privacy disclosure were the most popular concern among children for the refusal to donate biospecimens.
Conclusions
AACQ is an effective and standardized tool of content delivery to children from the surgical wards. Children who fully understood of biospecimen donation are suggested to participate in the consent signing.
Moral structuring of children during the process of obtaining informed consent in clinical and research settings
Moral structuring of children during the process of obtaining informed consent in clinical and research settings
Research Article
Anderson Díaz-Pérez, Elkin Navarro Quiroz, Dilia Esther Aparicio Marenco
BMC Medical Ethics, 25 November 2020; 21(122)
Open Access
Abstract
Background
Informed consent is an important factor in a child’s moral structure from which different types of doctor–patient relationships arise. Children’s autonomy is currently under discussion in terms of their decent treatment, beyond what doctors and researchers perceive. To describe the influential practices that exist among clinicians and researchers toward children with chronic diseases during the process of obtaining informed consent.
Methods
This was a cross-sectional, qualitative study via a subjective and interpretivist approach. The study was performed by conducting semi-structured interviews of 21 clinicians and researchers. Data analysis was performed using the SPSS version 21® and Atlas Ti version 7.0® programs.
Results
The deliberative and paternalistic models were influential practices in the physician–patient relationship. In the deliberative model, the child is expected to have a moral awareness of their care. The paternalistic model determined that submission was a way of structuring the child because he or she is considered to be a subject of extreme care.
Conclusions
The differentiated objectification [educational] process recognizes the internal and external elements of the child. Informed consent proved to be an appropriate means for strengthening moral and structuring the child.
Young women’s autonomy and information needs in the schools-based HPV vaccination programme: a qualitative study
Young women’s autonomy and information needs in the schools-based HPV vaccination programme: a qualitative study
Research Article
Harriet Fisher, Karen Evans, Jo Ferrie, Julie Yates, Marion Roderick & Suzanne Audrey
BMC Public Health, 10 November 2020; 20(1680)
Open Access
Abstract
Background
Until 2019, the English schools-based human papillomavirus (HPV) vaccination programme was offered to young women (but not young men) aged 12 to 13 years to reduce HPV-related morbidity and mortality. The aim of this study is to explore the extent to which young women were able to exercise autonomy within the HPV vaccination programme. We consider the perspectives of young women, parents and professionals and how this was influenced by the content and form of information provided.
Methods
Recruitment was facilitated through a healthcare organisation, schools and community organisations in a local authority in the south-west of England. Researcher observations of HPV vaccination sessions were carried out in three schools. Semi-structured interviews took place with 53 participants (young women, parents of adolescent children, school staff and immunisation nurses) during the 2017/18 and 2018/19 programme years. Interviews were recorded digitally and transcribed verbatim. Thematic analysis was undertaken, assisted by NVivo software.
Results
Young women’s active participation and independence within the HPV vaccination programme was constrained by the setting of vaccination and the primacy of parental consent procedures. The authoritarian school structure influenced the degree to which young women were able to actively participate in decisions about the HPV vaccination programme. Young women exercised some power, either to avoid or receive the vaccine, by intercepting parental consent forms and procedures. Reliance on leaflets to communicate information led to unmet information needs for young women and their families. Communication may be improved by healthcare professional advocacy, accessible formats of information, and delivery of educational sessions.
Conclusions
Strategies to improve communication about the HPV vaccine may increase young people’s autonomy in consent procedures, clarify young people’s rights and responsibilities in relation to their health care services, and result in higher uptake of the HPV vaccination programme.
Be legally wise: When is parental consent required for adolescents’ access to pre-exposure prophylaxis (PrEP)?
Be legally wise: When is parental consent required for adolescents’ access to pre-exposure prophylaxis (PrEP)?
Ann Strode, Catherine M. Slack, Zaynab Essack, Jacintha D. Toohey, Linda-Gail Bekker
Southern African Journal of HIV Medicine, 10 November 2020
Open Access
Abstract
Background
South African adolescents (12–17 years) need an array of prevention tools to address their risk of acquiring the life-long, stigmatized condition that is HIV. Prevention tools include pre-exposure prophylaxis (PrEP). However, service providers may not be clear on the instances where self-consent is permissible or when parental consent should be secured.
Aim
To consider the legal norms for minor consent to PrEP using the rules of statutory interpretation.
Setting
Legal and policy framework.
Results
We find that PrEP should be interpreted as a form of ‘medical treatment’; understood broadly so that it falls within the ambit of one of consent norms in the Children’s Act. When PrEP is interpreted as ‘medical treatment’, then self-consent to PrEP is permissible for persons over 12 years, if they have the mental capacity and maturity to understand the benefits, risks, social and other implications of the proposed treatment. Currently, PrEP is only licensed for persons over 35 kg. Reaching the age of 12 years is a necessary but not sufficient criteria for self-consent and service-providers must ensure capacity requirements are met before implementing a self-consent approach. Decisional support and adherence support are critical.
Conclusions
We recommend that service-providers should take steps to ensure that those persons who meet an age requirement for self-consent, also meet the capacity requirement, and that best practices in this regard be shared. We also recommend that policy makers should ensure that PrEP guidelines are updated to reflect the adolescent consent approach articulated above. It is envisaged that these efforts will enable at-risk adolescents to access much needed interventions to reduce their HIV risk.
Consent and refusal of treatment by older children in emergency settings
Consent and refusal of treatment by older children in emergency settings
Perspective
Dominique Moritz, Phillip Ebbs
Emergency Medicine Australasia, 9 November 2020
Abstract
The law recognises that children can exert an increasing level of autonomy and decision‐making about their healthcare as they mature, and that intelligence and maturity levels will vary from one child to the next. Therefore, the parameters for when older children can consent to healthcare can be a complex area for clinicians to navigate. Refusal of treatment provides additional challenges for clinicians because the law is less clear about when older children can be involved in refusing treatment which is in their best interests. This article outlines relevant legislation concerning child consent to treatment across Australian jurisdictions and examines refusal of treatment by children using the 2018 case of Mercy Hospitals Victoria v D1 & Anor.
Problematizing consent: searching genetic genealogy databases for law enforcement purposes
Problematizing consent: searching genetic genealogy databases for law enforcement purposes
Samuel, D. Kennett
New Genetics and Society, 18 November 2020
Abstract
Genetic genealogy databases have become particularly attractive to law enforcement agencies, especially in the United States (US), which have started to employ genealogists to search them with unknown origin DNA from unidentified human remains (suicides, missing persons) or from a serious crime scene, to help identify the victim, or a potential suspected perpetrator, respectively. While this investigative genetic genealogy (IGG) technique holds much promise, its use – particularly during serious criminal investigations – has sparked a range of social and ethical concerns. Receiving consent for IGG from genetic genealogy database users has been argued as a way to address such concerns. While critiques of the importance of consent are well documented in the biomedical and forensic biobanking literature, this has not been explored for IGG. We sought to address this gap by exploring the views of UK stakeholders. Our research question was: what are UK public and professional stakeholders’ views about the importance of the consent process for IGG when used for serious criminal cases? The methodological approach was interview-based and exploratory. Our analysis identified that all interviewees stressed the importance of consent, though interviewees’ narratives pointed to inadequacies of individual-based consent as an ethical panacea for IGG.
Legal issues in end-of-life care 2: consent and decision-making
Legal issues in end-of-life care 2: consent and decision-making
Helen Taylor
Journal of Paramedic Practice, 9 November 2020; 12(11)
Abstract
Paramedics are legally and professionally obliged to uphold their patients’ right to dignity, respect and autonomy—and this includes the general requirement to obtain their consent before proceeding with any intervention. The first instalment of this two-part article considered the challenges that this might present to the paramedic. This second article develops this theme and further explores the legal framework underpinning the decision-making process when caring for a patient approaching the end of life. It also examines issues around consent and mental capacity in more depth and addresses matters such as such as advance decisions to refuse treatment (ADRT) and do not attempt cardio-pulmonary resuscitation (DNACPR) decisions.
Controversies of consent: the contradictory uses of indigenous free, prior, and informed consultation and consent in Panama [DISSERTATION]
Controversies of consent: the contradictory uses of indigenous free, prior, and informed consultation and consent in Panama [DISSERTATION]
Marian Ahn Thorpe
Rutgers University; School of Graduate Studies, October 2020
Description
This dissertation examines the right of Free, Prior, and Informed Consultation and Consent (FPIC) in western Panama, where Ngäbe Indigenous communities have long fought to protect their land from copper mines, hydroelectric projects, and other forms of development. Drawing on sixteen months of ethnographic and legal research between 2013 and 2016, I demonstrate that, like other forms of multicultural recognition, FPIC can be used by states to manage Indigenous dissent and rights-wash contentious projects. This management can take place through careful attention to the wording or procedural details of FPIC policies; or, it can occur through the ways in which consent-seekers and consent-givers exploit or circumvent conflict-prone community decision-making processes. However, while FPIC can be used to limit Indigenous rights, I also show how various groups of Ngäbe still defy and work within these constraints. More broadly, I show that the Western liberal conception of consent as autonomous free choice obscures ways in which consent embeds subjects in relations of power. By framing consent not as a sign of freedom but as a sign of power relations, I underscore how FPIC and other forms of multicultural recognition join together Indigenous peoples and states to collaboratively create the multicultural state.
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Nothando Ngwenya, Manono Luthuli, Resign Gunda, Ntombizonke A Gumede, Oluwafemi Adeagbo, Busisiwe Nkosi, Dickman Gareta, Olivier Koole, Mark Siedner, Emily B Wong, Janet Seeley
International Health, 9 November 2020; 12(6) pp 560–566
Abstract
Background
In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa.
Methods
We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation.
Results
Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process.
Conclusions
Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities’ socio-economic status and how compensation can be potentially coercive.
Medical informed choice: understanding the element of time to meet the standard of care for valid informed consent
Medical informed choice: understanding the element of time to meet the standard of care for valid informed consent
Zachary R Paterick, Timothy Edward Paterick , Barb Block Paterick
Postgraduate Medical Journal, 9 December 2019
Open Access
Abstract
Medical informed choice is essential for a physician meeting their fiduciary duty when proposing medical and surgical actions, and necessary for a patient to consent or cull the outlined therapeutic approaches. Informed choice, as part of a shared decision-making model, allows widespread give-and-take of ideas between the patient and physician. This sharing of ideas results in a partnership for decision-making and a responsibility for medical and surgical outcomes. Informed choice is indispensible to the patient education process that meets the desired outcome of any covenant —an offer of and acceptance of the proposed treatment. The covenant anchors a true patient–physician partnership with parity and equality in decision-making and medical/surgical outcomes. Medical informed choice flows from ethical and legal principles necessary to meet the acknowledged standard of care. This is codified by statute and fortified in general common law. This espouses a fiduciary relationship where the patient and physician understand and accede to the degree of autonomy the patient requests. The growth of an equal patient–physician relationship requires time. There is no alternative to the time variable when developing a physician–patient relationship. Despite physicians being under pressures to perform more clinical and administrative duties in less time in the corporate model of medicine, time remains the most critical variable when considering informed choice and shared decision-making. Videos, pamphlets and alternate healthcare providers cannot and should not substitute for physician time.