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Article
Publication date: 31 August 2020

Michael Behan, Tanjila Nawshin, Samuel Nemanich, Jesse Kowalski, Ellen Sutter, Sunday Francis, Janet Dubinsky, Rebecca Freese, Kyle Rudser and Bernadette Gillick

Recruitment for pediatric non-invasive brain stimulation (NIBS) studies is often challenged by low enrollment. Understanding parental perceptions regarding NIBS is crucial to…

Abstract

Purpose

Recruitment for pediatric non-invasive brain stimulation (NIBS) studies is often challenged by low enrollment. Understanding parental perceptions regarding NIBS is crucial to develop new communication strategies to increase enrollment.

Design/methodology/approach

Integrating a crossed-disciplinary approach, the authors conducted a survey at the 2018 Minnesota State Fair querying the perception of risk and preferences of current and future parents associated with pediatric NIBS research. The survey consisted of 28 closed-text questions including demographics, photographs portraying NIBS, terminologies and factors related to NIBS studies.

Findings

Complete surveys were analyzed from 622 parent participants. A significant number of participants (42.8%) perceived the photographs of NIBS as “risky.” Additionally, 65.43% perceived the term “Non-invasive brain therapy” as not risky, a word combination not currently being used when recruiting potential participants. Over 90% (561/622) of participants chose the photograph of child-friendly MRI suite.

Research limitations/implications

Although this survey identified aspects crucial in recruitment for pediatric NIBS research, there were limitations. For example, the authors did not record the sex or demographic distribution (e.g. rural versus urban setting) of the participants. These factors may also influence recruitment messaging.

Originality/value

For important medical research to impact and improve the lives of the potential remedies, participation by the public in clinical trials is necessary. Often the general public perceives the trials as risky as a result of poor marketing communication recruitment material. This study sought to be understood if how the message is encoded has an impact on the decoding by the receiver.

Details

International Journal of Pharmaceutical and Healthcare Marketing, vol. 14 no. 4
Type: Research Article
ISSN: 1750-6123

Keywords

Article
Publication date: 19 September 2019

Elsie Whittington

Research within the fields of youth sexuality and safeguarding, and ethical governance more broadly, has traditionally prioritised risk aversion over the rights of young people to…

Abstract

Purpose

Research within the fields of youth sexuality and safeguarding, and ethical governance more broadly, has traditionally prioritised risk aversion over the rights of young people to participate in and shape research. This excludes younger people from setting agendas and directly communicating their lived experience to those in power. The paper aims to discuss these issues.

Design/methodology/approach

This paper describes and draws upon findings from an innovative two year participatory action research study exploring sexual consent with young people through embedded and participatory research across seven sites. The project was designed with young people and practised non-traditional approaches to research consent. As well as co-producing research data, the findings highlight how methods of co-enquiry and being explicit about the research consent process enabled young people to develop competence that can be applied in other contexts.

Findings

The paper addresses ethical tensions between young people’s rights to participation and protection. It argues that alongside robust safeguarding procedures, there is equal need to develop robust participation and engagement strategies with an explicit focus on young people’s competence, agency and rights to participate regardless of the perceived sensitivity of the topic.

Originality/value

The paper concludes with proposals for future youth-centred research practice. These relate to research design, ethical governance processes around risk and sensitive topics, emphasis on working collaboratively with young people and practitioners, a greater focus on children and young people’s rights – including Gillick competence and fluid models of consent. In doing so, it presents an essential point of reference for those seeking to co-produce research with young people in the UK and beyond.

Details

Journal of Children's Services, vol. 14 no. 3
Type: Research Article
ISSN: 1746-6660

Keywords

Article
Publication date: 1 April 2014

Robin Mackenzie and John Watts

The purpose of this paper is to demonstrate that the common and statutory law governing children's capacity or competence to consent to and to refuse medical treatment is…

Abstract

Purpose

The purpose of this paper is to demonstrate that the common and statutory law governing children's capacity or competence to consent to and to refuse medical treatment is unsatisfactory and to suggest solutions.

Design/methodology/approach

Critical legal analysis of the law on assessing minors’ decision-making capacity in relation to legal recognition of their consent to and refusal of medical treatment.

Findings

Without legal mechanisms which protect both children and their rights, all children and young people are effectively disabled from exercising age and capacity-related autonomy and participation in decisions affecting their lives. Yet in English law, inconsistencies between legal and clinical measures of decision-making capacity, situations where compulsory medical or mental health treatment is lawful, and tensions between rights and duties associated with human rights, autonomy, best interests and protections for the vulnerable create difficulties for clinicians, lawyers and patients.

Research limitations/implications

As the paper acknowledges in its recommendations, the views of stakeholders are needed to enrich and inform legal reforms in this area.

Originality/value

The paper makes suggestions to amend the law and clinical practice which are original and far reaching. The paper suggests that in order to observe children's rights while protecting them appropriately, the Mental Capacity Act 2005 and Deprivations of Liberty Safeguards should be applied to minors. The paper recommends the establishment of Mental Capacity Tribunals, similar in nature and purpose to Mental Health Tribunals, to provide legal safeguards and mechanisms to foster the supported decision-making envisaged in recent United Nations Conventions.

Article
Publication date: 23 May 2011

Robin Mackenzie and John Watts

The purpose in writing this paper is to highlight the lack of knowledge of many who are involved in capacity assessments, especially non‐professionals such as carers of the…

993

Abstract

Purpose

The purpose in writing this paper is to highlight the lack of knowledge of many who are involved in capacity assessments, especially non‐professionals such as carers of the learning disabled, and the view that current guidance for capacity assessments does not take into account issues of emotionality.

Design/methodology/approach

The approach is to discuss current guidance and practice, and to offer academic criticism and explanation.

Findings

The findings include the discovery that the Mental Capacity Act 2005 Code of Practice suggests that healthcare professionals and family/carers may undertake assessments of decision‐making capacity, yet the guidance it provides for their doing so overlooks salient issues. Many of those involved in the daily lives of those, who may lack decision‐making capacity (and thus be seen as legally incompetent) such as the learning disabled, demented, mentally ill and neurodiverse, must decide whether to respect their decisions as competent, or to disregard the decisions on the grounds of incompetence and to act in the person's best interests. As many will lack training in their clinical and legal responsibilities and liabilities, it is crucial that they, and those they care for, are protected by not only an increased knowledge of mental capacity legislation and practice, but also how it may apply to questions of emotionality and neurodiversity.

Originality/value

This paper expands and builds on the authors' previous research into including emotionality in assessments of capacity, and will be of use to practitioners in the field of learning disability, and other psychiatric specialities.

Details

Tizard Learning Disability Review, vol. 16 no. 3
Type: Research Article
ISSN: 1359-5474

Keywords

Article
Publication date: 1 March 2006

Kevin Flemen

Abstract

Details

Drugs and Alcohol Today, vol. 6 no. 1
Type: Research Article
ISSN: 1745-9265

Article
Publication date: 1 March 2013

Lisa Rippon

In this article, the aim is to focus on the legislation in place within England and Wales pertaining to the care and treatment of children and young people, but intends to give a…

497

Abstract

Purpose

In this article, the aim is to focus on the legislation in place within England and Wales pertaining to the care and treatment of children and young people, but intends to give a brief outline of the equivalent law in Scotland. It seeks to describe how the age of a young person will determine which piece of legislation should be used to ensure an admission into an inpatient Child and Adolescent Mental Health Unit will be lawful. It also seeks to consider the role of those with parental responsibility in the decision‐making progress and discuss which components of a proposed treatment plan they would or would not be able to consent to on behalf of those children and young people in their care.

Design/methodology/approach

The author searched the literature, relevant legislation and codes of practice for guidance on the care and treatment of children and adolescents with an intellectual disability.

Findings

Legislation governing the admission and treatment of children and adolescents with an intellectual disability is complex. All clinicians working with those under the age of 18 should have knowledge of the relevant legislation to ensure that the rights of children and young people are upheld.

Originality/value

This article summarises the relevant guidance that is already available on the care and treatment of children and young people, but focuses on the needs of those with an intellectual disability.

Book part
Publication date: 7 March 2022

Emma Nottingham

Recent years have seen growing concern about the climate crisis. Lack of adequate attention on this issue from governments and industries has prompted social movements against…

Abstract

Recent years have seen growing concern about the climate crisis. Lack of adequate attention on this issue from governments and industries has prompted social movements against climate change. Youth activism has been particularly effective at advancing the cause, especially campaign work by children, most notably Greta Thunberg. The tourism industry impacts global carbon emissions, particularly due to international travel. Sustainable tourism is therefore becoming increasingly important in order to help respond to the climate crisis and protect the individual rights of citizens, including children. Children have unique and important insights to offer, yet they are in a democratically weak position given that they cannot vote and are often wholly reliant on others to represent their interests. However, when we allow children to occupy legal and political spaces and support them with participatory democracy, such as through supporting the child's right to protest or supporting strategic litigation, significant progress can be made for climate justice and a more sustainable future. Adults have a responsibility to respond positively to the work of youth activists to help nurture and encourage the environmentally conscious attitudes of children into adulthood.

Details

Children in Sustainable and Responsible Tourism
Type: Book
ISBN: 978-1-80117-657-6

Keywords

Article
Publication date: 4 December 2019

Maki Nonomura

The purpose of this paper is to explore reasons for household preparation losses.

Abstract

Purpose

The purpose of this paper is to explore reasons for household preparation losses.

Design/methodology/approach

Observations of preparation behaviors and semi-structured interviews of nine people were conducted in their kitchens. The data were analyzed through a qualitative data analysis method.

Findings

Three types of preparation losses were identified, i.e. possibly avoidable food waste, excessive removals and unintentional losses. Possibly avoidable food waste and excessive removals were generated owing to people’s perception that is in the gray area between edible and inedible, their preferences, lower quality of food, convenience in preparation, lack of preparation skill and knowledge, and lack of concern about preparation losses. Unintentional losses were tiny pieces of food that were left on cooking tools.

Research limitations/implications

As this study’s participants were nine women living in Japan, further research is needed in order to achieve saturation.

Originality/value

Few studies have discussed reasons for preparation losses, and extant studies were based on a diary method and questionnaires. This present study uncovers several new reasons for preparation losses based on interviews and observations of consumer preparation behaviors. These new details would be helpful for campaigns or programs that aim to reduce food losses.

Article
Publication date: 1 April 2004

Tracy Carlson, Annette Hames, Sue English and Caroline Wills

This study investigates the current practice of referrers with regard to consent to treatment of adult patients who have learning disabilities. It addresses specifically…

Abstract

This study investigates the current practice of referrers with regard to consent to treatment of adult patients who have learning disabilities. It addresses specifically referrers' awareness of any guidelines on consent, whether they obtain consent before referral and, if so, whether and how they keep written records on gaining consent. Professionals who had referred an adult patient to the Community Team Learning Disability (CTLD) in Newcastle in the last two years were sent a postal questionnaire. The results of the questionnaire are being used to gain better understanding of present practice among referrers and to provide local guidelines on gaining consent in line with recommendations from the Department of Health.

Details

Tizard Learning Disability Review, vol. 9 no. 2
Type: Research Article
ISSN: 1359-5474

1 – 10 of 62