Decision-making by Adolescents and Parents of Children With Cancer Regarding Health Research Participation

Read, Kate; Fernandez, Conrad V.; Gao, Jun; Strahlendorf, Caron; Moghrabi, Albert; Pentz, Rebecca D.; Barfield, Raymond; Baker, Justin N.; Santor, Darcy A.; Weijer, Charles; Kodish, Eric

doi:10.1542/peds.2008-2878

Cited by 54 publications

(58 citation statements)

References 25 publications

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“…The professional language used in discussions decreased the participation of children and parents and their willingness to make decisions. [24,35,38] The children and parents felt that the healthcare personnel gave information in an unclear manner, so that they were not able to properly consider all the possible risks related to treatments. Existing guidelines regarding the sharing of information were complied with to varying degrees.…”

Section: A Child In the Decision-making Related To Treatmentmentioning

confidence: 99%

“…[39] Excessive information can also be an obstacle to participating in a clinical study for teenagers and young adults. [38] Taking the child into account in decision-making and participation. Making a decision together or discussing their decision with parents was significant for children's self-esteem and their adherence to treatment.…”

Section: A Child In the Decision-making Related To Treatmentmentioning

confidence: 99%

“…[23,34] The nurses should encourage children to be active in decision-making, and it is also part of the ethical responsibilities of nurses. [11,38] Healthcare personnel should test their own skills and give information and support their patients to participate in the decision-making related to their treatment. [34] Nurses specializing in the treatment of children are in an important position regarding this issue.…”

Section: The Readiness Of the Personnel To Support The Decision-makinmentioning

confidence: 99%

“…[31] When teamwork between children, parents and healthcare personnel is combined with research information, the decision-making process of children and minors can be developed. [33,38] 4 Discussion…”

Section: The Readiness Of the Personnel To Support The Decision-makinmentioning

confidence: 99%

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Children as decision-makers in health care - An integrative review

Virkki

Tolonen

Koskimaa³

et al. 2014

Clinical Nursing Studies

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The aim of this integrative review is to describe a child's participation in the decision-making process related to treatment. The goal is to increase knowledge of the ways that healthcare professionals can use to support a child's decision-making ability. The data were gathered from the Medline and Cinahl databases and the data consisted of 23 articles which were published in scientific journals during 2002-2013. The articles were analyzed with an inductive content analysis. The results of the review show that a child's knowledge skills, wishes and values were often not taken into account and their participation was limited. Children were taken into account to varying degrees, depending on the time available and the individual healthcare professional. The personnel often made the treatment decisions on behalf of the families. This was greatly influenced by the attitudes of the personnel and parents and the ability of the healthcare personnel to work with child patients. The professional language used in discussions was shown to be an obstacle to flexible cooperation.

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Section: A Child In the Decision-making Related To Treatmentmentioning

confidence: 99%

Section: A Child In the Decision-making Related To Treatmentmentioning

confidence: 99%

Section: The Readiness Of the Personnel To Support The Decision-makinmentioning

confidence: 99%

Section: The Readiness Of the Personnel To Support The Decision-makinmentioning

confidence: 99%

See 2 more Smart Citations

Children as decision-makers in health care - An integrative review

Virkki

Tolonen

Koskimaa³

et al. 2014

Clinical Nursing Studies

View full text Add to dashboard Cite

show abstract

“…[3][4][5] Although some provider and parent discomfort exists surrounding discussions of death and EoL care, [6][7][8][9] AYAs have expressed a desire and the ability to share their values, beliefs, and preferences for treatment at the EoL. [10][11][12][13][14][15][16][17] Moreover, the American Academy of Pediatrics, the Institute of Medicine, and the World Health Organization recommend involving AYAs in care decisions as much as possible, as they are developmentally and emotionally ready. 5,18,19 During normal adolescent development, individuals gain independence, formulate their self-identity, strengthen peer and romantic relationships, and define their future role in life.…”

Section: Discussionmentioning

confidence: 99%

Allowing Adolescents and Young Adults to Plan Their End-of-Life Care

2012

PEDIATRICS

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Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials

Baker

Leek

Salas

et al. 2013

Cancer

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BACKGROUND: Informed consent for a pediatric oncology phase 1 trial is a delicate process, and is made more complex by the difficulty of the information and the requirement for parental consent, and patient assent when applicable. This analysis identifies suggestions for improving the informed consent process received from parents and adolescent and young adult patients (aged 14 years-21 years) who had the option of participating in a phase 1 pediatric oncology trial. METHODS: A total of 57 parents and 20 patients completed interviews as part of a multisite, prospective, descriptive study. These transcribed interviews were studied using established content analysis methods. RESULTS: Parent and patient responses contained 220 suggestions and 54 suggestions, respectively. A total of 21 unique suggestions for improvement emerged in 3 main themes: 1) provision of more information; 2) structure and presentation of the informed consent process, and 3) suggestions for physicians conducting the process. Common suggestions included providing more specific information about the trial, allowing more time for decision-making, and using different methods to deliver information. CONCLUSIONS: Participants involved in the informed consent process for a phase 1 trial provided specific recommendations to research teams to enhance the process. Physician/investigators should be informed of these recommendations and develop and test interventions incorporating them. Cancer 2013;119:4154-61.

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Decision-making by Adolescents and Parents of Children With Cancer Regarding Health Research Participation

Abstract: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.

Cited by 54 publications

References 25 publications

Children as decision-makers in health care - An integrative review

Children as decision-makers in health care - An integrative review

Allowing Adolescents and Young Adults to Plan Their End-of-Life Care

Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials

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