Interventions for promoting participation in shared decision-making for children with cancer

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

“…They were unable to identify any such studies, concluding among other things, that much ‘evidence promoting young people’s participation in decision-making is authored by policy makers and that we lack strong evidence from research that supports these recommendations’. 43 Taken together, our findings suggest a view that may differ from current ethical guidance and regulation that promote full information and minimal external influence for adolescents and parents, encouraging autonomy of the adolescent. Striving to impose this approach, particularly in the face of a poor prognosis, may add to distress and confusion, interfere with their agency and their ability to determine or participate as fully as they are able in decision-making about the course of their own/their child’s healthcare.…”

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

“…They were unable to identify any such studies, concluding among other things, that much ‘evidence promoting young people’s participation in decision-making is authored by policy makers and that we lack strong evidence from research that supports these recommendations’. 43 Taken together, our findings suggest a view that may differ from current ethical guidance and regulation that promote full information and minimal external influence for adolescents and parents, encouraging autonomy of the adolescent. Striving to impose this approach, particularly in the face of a poor prognosis, may add to distress and confusion, interfere with their agency and their ability to determine or participate as fully as they are able in decision-making about the course of their own/their child’s healthcare.…”

Adolescents With Cancer Need Trustworthy Information and Prefer to Receive It From a Human Source Rather Than From the Internet: A Qualitative Study

“…This information is important for them to feel involved and included. Similar to Coyne et al (2016) , in the current study, the participants stated that they trust their parents to provide them with the selected information that they should know. The parents constitute their anchor and support system and they appreciate them as the mediators of information who adapt it for their children so that they will be able to deal with it.…”

Checklist of Paediatric Advance Care Planning: A Delphi Study

“…These discussions strengthen familial bonds, facilitate emotional processing, and assist parents in preparing for the future, helping them cope with loss and life changes (Pao and Mahoney 2018). Moreover, such planning allows children to maintain a sense of agency and fulfil their familial roles despite their illnesses (Coyne et al 2016). This theme also aligns with the Chinese cultural tradition of filial piety, highlighting familial responsibilities and reciprocal care (Cheng et al 2020).…”

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

“…They were unable to identify any such studies, concluding among other things, that much ‘evidence promoting young people’s participation in decision-making is authored by policy makers and that we lack strong evidence from research that supports these recommendations’. 43 Taken together, our findings suggest a view that may differ from current ethical guidance and regulation that promote full information and minimal external influence for adolescents and parents, encouraging autonomy of the adolescent. Striving to impose this approach, particularly in the face of a poor prognosis, may add to distress and confusion, interfere with their agency and their ability to determine or participate as fully as they are able in decision-making about the course of their own/their child’s healthcare.…”

Adolescents With Cancer Need Trustworthy Information and Prefer to Receive It From a Human Source Rather Than From the Internet: A Qualitative Study

“…This information is important for them to feel involved and included. Similar to Coyne et al (2016) , in the current study, the participants stated that they trust their parents to provide them with the selected information that they should know. The parents constitute their anchor and support system and they appreciate them as the mediators of information who adapt it for their children so that they will be able to deal with it.…”

Checklist of Paediatric Advance Care Planning: A Delphi Study

“…These discussions strengthen familial bonds, facilitate emotional processing, and assist parents in preparing for the future, helping them cope with loss and life changes (Pao and Mahoney 2018). Moreover, such planning allows children to maintain a sense of agency and fulfil their familial roles despite their illnesses (Coyne et al 2016). This theme also aligns with the Chinese cultural tradition of filial piety, highlighting familial responsibilities and reciprocal care (Cheng et al 2020).…”

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

“…They were unable to identify any such studies, concluding among other things, that much ‘evidence promoting young people’s participation in decision-making is authored by policy makers and that we lack strong evidence from research that supports these recommendations’. 43 Taken together, our findings suggest a view that may differ from current ethical guidance and regulation that promote full information and minimal external influence for adolescents and parents, encouraging autonomy of the adolescent. Striving to impose this approach, particularly in the face of a poor prognosis, may add to distress and confusion, interfere with their agency and their ability to determine or participate as fully as they are able in decision-making about the course of their own/their child’s healthcare.…”

Adolescents With Cancer Need Trustworthy Information and Prefer to Receive It From a Human Source Rather Than From the Internet: A Qualitative Study

“…This information is important for them to feel involved and included. Similar to Coyne et al (2016) , in the current study, the participants stated that they trust their parents to provide them with the selected information that they should know. The parents constitute their anchor and support system and they appreciate them as the mediators of information who adapt it for their children so that they will be able to deal with it.…”

Checklist of Paediatric Advance Care Planning: A Delphi Study

“…These discussions strengthen familial bonds, facilitate emotional processing, and assist parents in preparing for the future, helping them cope with loss and life changes (Pao and Mahoney 2018). Moreover, such planning allows children to maintain a sense of agency and fulfil their familial roles despite their illnesses (Coyne et al 2016). This theme also aligns with the Chinese cultural tradition of filial piety, highlighting familial responsibilities and reciprocal care (Cheng et al 2020).…”