Dataset Information

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

ABSTRACT:

Background

Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research.

Methods

An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis.

Results

The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted.

Conclusion

This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

SUBMITTER: Norback K

PROVIDER: S-EPMC10012289 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

Norbäck Kajsa K Höglund Anna T AT Godskesen Tove T Frygner-Holm Sara S

BMC medical ethics 20230314 1

<h4>Background</h4>Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence i ...[more]

PMID: 36918868

Similar Datasets

Project description:BackgroundIn an effort to improve the quality of medical care, the philosophy of patient-centered care has become integrated into almost every aspect of the medical community. Despite its widespread acceptance, among patients and practitioners, there are concerns that rapid advancements in artificial intelligence may threaten elements of patient-centered care, such as personal relationships with care providers and patient-driven choices. This study explores the extent to which patients are confident in and comfortable with the use of these technologies when it comes to their own individual care and identifies areas that may align with or threaten elements of patient-centered care.MethodsAn exploratory, mixed-method approach was used to analyze survey data from 600 US-based adults in the State of Florida. The survey was administered through a leading market research provider (August 10-21, 2023), and responses were collected to be representative of the state's population based on age, gender, race/ethnicity, and political affiliation.ResultsRespondents were more comfortable with the use of AI in health-related tasks that were not associated with doctor-patient relationships, such as scheduling patient appointments or follow-ups (84.2%). Fear of losing the 'human touch' associated with doctors was a common theme within qualitative coding, suggesting a potential conflict between the implementation of AI and patient-centered care. In addition, decision self-efficacy was associated with higher levels of comfort with AI, but there were also concerns about losing decision-making control, workforce changes, and cost concerns. A small majority of participants mentioned that AI could be useful for doctors and lead to more equitable care but only when used within limits.ConclusionThe application of AI in medical care is rapidly advancing, but oversight, regulation, and guidance addressing critical aspects of patient-centered care are lacking. While there is no evidence that AI will undermine patient-physician relationships at this time, there is concern on the part of patients regarding the application of AI within medical care and specifically as it relates to their interaction with physicians. Medical guidance on incorporating AI while adhering to the principles of patient-centered care is needed to clarify how AI will augment medical care.

Project description:BackgroundAdvance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist.AimTo study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation.MethodsThe study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis.FindingsOrganisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing.ConclusionsSuccessful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.

Project description:BackgroundA gap has been reported between healthcare professionals' (hereafter "professionals") recognition of preschool children's diets and parents' perception of concern. This study investigated the gap between the concerns reported by professionals and parents' perceptions regarding health and dietary habits by age (18 months and 3 years) and gender in Japan.MethodsThe study design consisted of a cross-sectional, multilevel survey. The request letters were sent to all households with target children with the cooperation of local governments. After obtaining written informed consent from parents, questionnaires were distributed to them. The survey included 30 items on children's concerns about health and dietary habits. At the health checkup, parents indicated whether they were concerned in response to each item, and responded child's height and weight and birth height and weight. Next, the professionals provided counseling to the parents at a health checkup. After that, the professionals noted their concerns in response to the same 30 items as those given to parents. The participation rates were 82.9% (18 months) and 82.8% (3 years). Data of 239 persons for 18 months and 223 persons for 3 years old were analyzed. In the statistical analysis, the items that were judged as concerning by professionals but not by parents were identified; likewise, the items that were of concern to parents but not to professionals were identified. Sensitivity, false negative rate, specificity, false positive rate, and Youden index were calculated to analyze the discordance rate for each item.ResultsMany parents in this study were concerned about the issues that professionals did not consider to be concerning. Moreover, the parents worried about more issues for 3-year-olds than for 18-month-olds. The items for which ≥ 10 professionals indicated concerns and with higher discordance between the professionals and parents for both boys and girls were "picky eating" for 18-month-olds and "inconsistent amount of food" for 3-year-olds.ConclusionsThe concerns that professionals have with respect to children's diets and the things that parents worry about show gaps. It might be necessary to provide professional counseling for parents to develop a correct understanding of their children's dietary habits.

Project description:OBJECTIVE: To explore how survey respondents perceived their experiences and the impact of participating in a survey, and to assess adverse consequences resulting from participation. DESIGN: Qualitative study involving purposefully selected participants who had participated in a household-based survey. METHODS: This qualitative study was nested within a survey that investigated the prevalence of gender-based violence perpetration and victimization with adult men and women in South Africa. 13 male- and 10 female-in-depth interviews were conducted with survey respondents. RESULTS: A majority of informants, without gender-differences, perceived the survey interview as a rare opportunity to share their adverse and or personal experiences in a 'safe' space. Gender-differences were noted in reporting perceptions of risks involved with survey participation. Some women remained fearful after completing the survey, that should breach of confidentiality or full survey content disclosure occur, they may be victimized by partners as a punishment for survey participation without men's approval. A number of informants generally discussed their survey participation with others. However, among women with interpersonal violence history or currently in abusive relationships, full survey content disclosure was done with fear; the partner responses were negative, and few women reported receiving threatening remarks but none reported being assaulted. In contrast no man reported adverse reaction by others. Informants with major life adversities reported that the survey had made them to relive the experiences causing them sadness and pain at the time. No informant perceived the survey as emotionally harmful or needed professional support because of survey questions. Rather the vast majority perceived benefit from survey participation. CONCLUSION: Whilst no informant felt answering the survey questions had caused them emotional or physical harm, some were distressed and anxious, albeit temporarily. Research protocols need to put in place safeguards where appropriate so that this group receives support and protection.

Project description:ObjectiveTo explore and describe how healthcare policymakers and healthcare practitioners from different levels of Swedish healthcare perceived the everyday practice of putting national policies to contain antibiotic resistance into effect.MethodA strategic sample of four healthcare policymakers, three healthcare practitioners working in hospital care, and six working in primary care were recruited and interviewed in person. A manifest and latent content analysis was carried out on the transcribed interview data.ResultsAnalysis revealed how the everyday practice of containing antibiotic resistance in different healthcare levels could be perceived as successful, difficult, or a dilemma. The informants' perceptions are presented in three categories which describe first; informants' perceptions of antibiotic use and antibiotic resistance in Sweden; secondly, informants' perceptions of definable efforts in containing antibiotic resistance in Sweden, most notably responsible use of antibiotics, prevention of infection, improving public knowledge of antibiotic resistance, and international collaboration; and thirdly, informants' perceptions of problem areas in containing antibiotic resistance in Sweden, such as behavior, attitudes and knowledge among healthcare practitioners and the public, work environment, and resources. Reflection on the underlying meaning of these perceptions led to identification of the latent theme, labelled "A sense of relative success, and many challenges yet to overcome".ConclusionThis study has given in-depth insight into how a group of healthcare policymakers and practitioners perceived the everyday practice of containing antibiotic resistance, and revealed their perceptions of successful efforts to combat antibiotic resistance so far. It has identified problem areas in different healthcare levels, bringing to light challenges yet to overcome, and areas to focus on in future policies, most notably more emphasis on attitude and behavior change, and increasing awareness of antibiotic resistance among both healthcare practitioners and patients.

Dataset Information

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

Background

Methods

Results

Conclusion

Publications

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets