Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology

Håkansson, Anna; Pergert, Pernilla; Abrahamsson, Jonas; Stenmarker, Margaretha

doi:10.1111/apa.15010

Cited by 6 publications

(2 citation statements)

References 23 publications

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“…As an example, due to the relative rarity of childhood cancers, paediatric oncology research in Sweden is performed in a relatively narrow context. COI situations might be difficult to avoid since the same people can be involved in two possibly competing interests: research and care (Schröder Håkansson et al, 2020). The REC members in this study brought up the management of COI as an important ethical question.…”

Section: Discussionmentioning

confidence: 99%

Research ethics committee members’ perspectives on paediatric research: a qualitative interview study

et al. 2023

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Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.

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Section: Discussionmentioning

confidence: 99%

Research ethics committee members’ perspectives on paediatric research: a qualitative interview study

et al. 2023

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“…Moral dilemmas in childhood cancer care often entail uncertainty of what is best for the child and the possible impact on the child´s care. Previous research in childhood cancer care reveals that moral dilemmas from HCPs' perspectives are related to decision making with parents [13][14][15][16], the child's growing autonomy [17,18], treatment limitations [18,19], and responsibilities of care [19]. Little is known about parents' moral dilemmas.…”

Section: Introductionmentioning

confidence: 99%

Children’s voices on their values and moral dilemmas when being cared and treated for cancer– a qualitative interview study

Weiner,

Pergert,

Castor

et al. 2024

BMC Med Ethics

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Background Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children’s values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care. Aim To explore children’s values and moral dilemmas when undergoing cancer treatment. Methods This is a qualitative study based on empirical data. The data collection was conducted through three focus group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children’s participation was based on voluntariness and consent/assent. Findings During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not? Conclusion Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment.

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

et al. 2023

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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.

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Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology

Cited by 6 publications

References 23 publications

Research ethics committee members’ perspectives on paediatric research: a qualitative interview study

Research ethics committee members’ perspectives on paediatric research: a qualitative interview study

Children’s voices on their values and moral dilemmas when being cared and treated for cancer– a qualitative interview study

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

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