Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis

Malone, Helen; Biggar, Susan; Javadpour, Sheila; Edworthy, Zai; Sheaf, Greg; Coyne, Imelda

doi:10.1002/14651858.cd012578.pub2

Cited by 21 publications

(29 citation statements)

References 138 publications

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“…19 The limited existing evidence suggests that pediatric involvement in decision-making is beneficial to patients, through facilitation of understanding and self-confidence, increased trust and decreased fear and anxiety, and improved care. 5,[20][21][22][23] Furthermore, utilizing parents as surrogate decision-makers can be flawed, as parental decision is subject to many external influences such as impact on other family members, religious or cultural views, and emotional state, hence furthering the importance of involving children in these decisions. 5,24 Unfortunately, despite the evidence for and support of involving children in medical decision-making, neither the nature of participation nor the practical implementation is clear.…”

Section: Discussionmentioning

confidence: 99%

“…25,26 Tools to assist in this are lacking. 21,23 Without the skills and training required to perform pediatric SDM, implementation will remain limited. 25,28 Additional barriers to involving children in SDM reported in the literature include power concerns, concern for the child and parents' emotional states, inadequate communication skills, and insufficient time to properly involve children in decisions.…”

Section: Discussionmentioning

confidence: 99%

“…25 In fact, within the CF population, a 2019 Cochrane review attempting to evaluate interventions for promoting SDM in children with CF yielded zero randomized control trials. 21 Decisional aids, which help to inform patients about their options and align decisions with values, have been quite effective in adult SDM but similar studies in pediatrics are lacking. 6,34,43 The dearth of research in this area is staggering, and points to the desperate need for continued investigation of both the barriers to implementing pediatric SDM, and interventions to assist in the implementation.…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Attitudes Towards Involving Children in Decision-Making Surrounding Lung Transplantation

Barsky

Berbert

Dahlberg

et al. 2020

Preprint

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Background: Medical care has shifted from a paternalistic model towards one centered around patient autonomy and shared decision-making (SDM), yet the role of the pediatric patient in decision-making is unclear. Studies suggest that many children with chronic disease are capable of participating in and even making medical decisions at a young age, and yet we do not standardly involve them. Methods: This is a single center survey study investigating physician attitudes towards involvement of children in decisions regarding lung transplantation, utilizing a hypothetical case scenario with systematic manipulation of age and maturity level. We evaluated physician belief regarding ultimate decision-making authority, attempts at reconciliation of parent-child discordance, and views towards utilizing ethics and psychiatry consultation services. Results: The majority of pediatric pulmonologists believe decision-making authority rests with the parents. The effects of age and maturity are unclear. In instances of parent-child disagreement, physician are more likely to try to convince parents to defer to the child if the child is both older and more mature. Physicians are divided on the utility of ethics and psychiatry consultations. Conclusion: Involvement of children in shared decision-making is broadly supported but poorly implemented. Despite evidence that children with chronic disease may have decisional capacity starting at a young age, the majority of physicians still grant decisional authority to parents. There are numerous barriers to involving children in decisions, including legal considerations. The role of age and maturity level in influencing these decisions appears small and warrants further investigation.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Attitudes Towards Involving Children in Decision-Making Surrounding Lung Transplantation

Barsky

Berbert

Dahlberg

et al. 2020

Preprint

View full text Add to dashboard Cite

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“…For the child, school brings its own challenges, though today it is recognized that the child needs to be involved in decision making ( 12 , 20 , 21 ), as many appear to manage their condition well, equally becoming personally “expert” as many are living longer lives ( 16 ).…”

Section: Text 2343mentioning

confidence: 99%

“…This can occur not just with children with CF but a range of conditions such as cancers, mental illness, hemophilia, epilepsy, sickle cell disease, and neurological disorders as research shows that the intra-family dynamics are very similar ( 13 , 14 , 19 , 21 ).…”

Section: Text 2343mentioning

confidence: 99%

Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions

Cox

Pritchard

2020

Journal of Patient Experience

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Cystic fibrosis (CF) is a chronic, life-threatening disease, similar to other chronic life-disrupting pediatric conditions, and this creates physical and psychosocial problems for parents and the healthy sibling/s of the sick child, who often become sibling carers. It is feared that, despite good intentions, professionals fail to hear the authentic voice of those intimately involved, especially these sibling carers, who can feel they became a “shadow child.” This study is a partnership between an academic and a former CF sibling carer, who wrote a “fairy story” for his children about the Uncle they never knew. It is an effort to hear the “voice of shadow children” who can feel left behind and unseen as families and professionals focus upon their ill sibling.

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Attitudes towards involving children in decision‐making surrounding lung transplantation

Barsky

Berbert

Dahlberg

et al. 2021

Pediatric Pulmonology

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Background: Medical care has shifted from a paternalistic model towards one centered around patient autonomy and shared decision-making (SDM), yet the role of the pediatric patient in decision-making is unclear. Studies suggest that many children with chronic disease are capable of making medical decisions at a young age, yet no standardized approaches have been developed for involving children in these decisions.Methods: This is a single-center survey study investigating the attitudes of pediatric pulmonologists towards involvement of children in decisions regarding lung transplantation, utilizing a hypothetical case scenario with systematic manipulation of age and maturity level. We evaluated physician belief regarding ultimate decisionmaking authority, reconciliation of parent-child discordance, and utility of ethics and psychiatry consultation services.Results: The majority of pediatric pulmonologists at this center believe decisionmaking authority rests with the parents. The effects of age and maturity are unclear.In instances of parent-child disagreement, physicians are more likely to try to convince parents to defer to the child if the child is both older and more mature.Physicians are divided on the utility of ethics and psychiatry consultations. Conclusion:Involvement of children with cystic fibrosis in SDM is broadly supported but inconsistently implemented. Despite evidence that children with chronic disease may have decisional capacity at a young age, the majority of physicians still grant decisional authority to parents. There are numerous barriers to involving children in decisions, including legal considerations. The role of age and maturity level in influencing these decisions appears small and warrants further investigation.

show abstract

Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis

Abstract: Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis.

Cited by 21 publications

References 138 publications

Attitudes Towards Involving Children in Decision-Making Surrounding Lung Transplantation

Attitudes Towards Involving Children in Decision-Making Surrounding Lung Transplantation

Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions

Attitudes towards involving children in decision‐making surrounding lung transplantation

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