Parental decision making involvement and decisional conflict: a descriptive study

Boland, Laura; Kryworuchko, Jennifer; Saarimaki, Anton; Lawson, Margaret L.

doi:10.1186/s12887-017-0899-4

Cited by 45 publications

(36 citation statements)

References 39 publications

(43 reference statements)

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“…Unfortunately, repeated measure of decisional conflict was not a study procedure. Since shared decision‐making may be associated with less decisional conflict surrounding medical decisions, adolescents' decisional conflict post joint decision‐making should be assessed in future studies.…”

Section: Discussionmentioning

confidence: 99%

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

et al. 2019

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Genomic testing of adolescents is increasing yet engaging them in decision-making is not routine. We assessed decisional conflict in adolescents and a parent making independent decisions about actual genomic testing results and factors that influenced their choices. We enrolled 163 dyads consisting of an adolescent (13-17 years) not selected based on a specific clinical indication and one parent. After independently choosing categories of conditions to learn for the adolescent, participants completed the validated Decisional Conflict Scale and a survey assessing factors influencing their respective choices. Adolescents had higher decisional conflict scores than parents (15.6 [IQR:4.7-25.6] vs 9.4 [IQR:1.6-21.9]; P = .0007). Adolescents with clinically significant decisional conflict were less likely to choose to learn all results than adolescents with lower decisional conflict (19.6% vs 80.4%; P < .0001) and less likely to report their choices were influenced by actionability of results (33.3% vs 18.9%; P = .044) and feeling confident they can deal with the results (71.2% vs 91.9%; P = .0005). Our findings suggest higher decisional conflict in adolescents may influence the type and amount of genomic results they wish to learn. Additional research assessing decisional conflict and factors influencing testing choices among adolescents in clinical settings are required. recommended by the ACMG while others may offer to return genomic screening results specific to study aims. 9,[11][12][13] Offering large amounts of genomic information to participants can make decisionmaking about which results to learn increasingly complex. When faced with such a complex decision, individuals may experience decisional conflict, which is a "personal uncertainty about which course of action to take when choice among competing options involves risk, regret or challenge to personal life values." 14 Making decisions about learning genomic information can be particularly challenging for asymptomatic minors -especially if they are offered the option to learn about carrier status or adult onset conditions that are not actionable in childhood. Concerns about learning carrier results or adult-onset conditions include psychosocial harms such as undue loss of autonomy and privacy; stress, anxiety and stigmatization. 15,16 However, benefits also include being aware of treatment and screening options, not being blindsided by a diagnosis at a later age, and the ability to make informed reproductive decisions and prompt life changes. 17 Literature focusing on the return of secondary genomic results has mainly focused on understanding the preferences of adults and parents with children who are at risk of or previously diagnosed with a genetic condition. 16,18,19 Adolescents' preferences about secondary findings and factors that influence their decisions to learn genomic information have largely been unexplored. In addition, most studies have involved hypothetical return of secondary findings and may not accurately depict preferences of the participa...

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Section: Discussionmentioning

confidence: 99%

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

et al. 2019

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Section: Introductionmentioning

confidence: 99%

“…The efficacy of SDM in pediatrics is not well defined [11][12][13]. This, in part, stems from challenges with engaging both parents and children (depending on age and maturity level) in the decision-making process [12,13]. Difficulty also lies in the direct application of SDM models, which have typically been created for adult patients, to pediatric care where the decision maker is not a competent, adult patient but rather a surrogate decision maker (i.e.…”

Section: Introductionmentioning

confidence: 99%

Discrepancies in decision making preferences between parents and surgeons in pediatric surgery

Carlisle

Klipowicz

Shinkunas

et al. 2021

BMC Med Inform Decis Mak

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Background Little data exists regarding decision-making preferences for parents and surgeons in pediatric surgery. Here we investigate whether parents and surgeons have similar decision-making preferences as well as which factors influence those preferences. Specifically, we compare parents’ and surgeons’ assessments of the urgency and complexity of pediatric surgical scenarios and the impact of their assessments on decision-making preferences. Methods A survey was emailed to parents of patients evaluated in a university-based pediatric surgery clinic and surgeons belonging to the American Pediatric Surgical Association. The survey asked respondents to rate 6 clinical vignettes for urgency, complexity, and desired level of surgeon guidance using the Controlled Preferences Scale (CPS). Results Regarding urgency, parents were more likely than surgeons to rate scenarios as emergent when cancer was involved (parents: 68.8% cancer vs. 29.5% non-cancer, p < .001; surgeons: 19.2% cancer vs. 25.4% non-cancer, p = .051). Parents and surgeons were more likely to rate a scenario as emergent when a baby was involved (parents: 45.2% baby vs. 36.2% child, p = .001; surgeons: 28.0% baby vs. 14.0% child, p < .001). Regarding decision-making preferences, parents and surgeons had similar CPS scores (2.56 vs. 2.72, respectively). Multivariable analysis showed parents preferred more surgeon guidance when scenarios involved a baby (OR 1.22; 95% CI 1.08–1.37; p < 0.01) or a cancer diagnosis (OR 1.29; 95% CI 1.11–1.49; p < 0.01), and that both parents and surgeons preferred more surgeon guidance when a scenario was considered emergent (parents: OR 1.81; 95% CI 1.37–2.38, p < 0.001; surgeons: OR 2.48 95% CI 1.76–3.49, p < 0.001). Conclusions When a pediatric patient is a baby or has cancer, parents are more likely then surgeons to perceive the clinical situation to be emergent, and both parents and surgeons prefer more surgeon guidance in decision-making when a clinical scenario is considered emergent. More research is needed to understand how parents’ decision-making preferences depend on clinical context.

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“…As a result, parents may navigate between feeling excluded from services, advocating or assuming the role of surrogate decision makers depending on the age and capacity of the child or young person [ 7 , 8 ]. Such feelings and roles sometimes result in added stressors for the parents involved [ 7 ]; low service engagement [ 9 , 10 ]; and treatment disagreements between parents, health care practitioners, and young people [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

Feasibility and Acceptability of a Digital Intervention to Support Shared Decision-making in Children’s and Young People’s Mental Health: Mixed Methods Pilot Randomized Controlled Trial

Liverpool¹,

Edbrooke‐Childs²

2021

JMIR Form Res

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Background Interventions to involve parents in decisions regarding children’s and young people’s mental health are associated with positive outcomes. However, appropriately planning effectiveness studies is critical to ensure that meaningful evidence is collected. It is important to conduct pilot studies to evaluate the feasibility and acceptability of the intervention itself and the feasibility of the protocol to test effectiveness. Objective This paper reports the findings from a feasibility and acceptability study of Power Up for Parents, an intervention to promote shared decision-making (SDM) and support parents and caregivers making decisions regarding children’s and young people’s mental health. Methods A mixed method study design was adopted. In stage 1, health care professionals and parents provided feedback on acceptability, usefulness, and suggestions for further development. Stage 2 was a multicenter, 3-arm, individual, and cluster randomized controlled pilot feasibility trial with parents accessing services related to children’s and young people’s mental health. Outcome measures collected data on demographics, participation rates, SDM, satisfaction, and parents’ anxiety. Qualitative data were analyzed using thematic analysis. Google Analytics estimates were used to report engagement with the prototype. Outcomes from both stages were tested against a published set of criteria for proceeding to a randomized controlled trial. Results Despite evidence suggesting the acceptability of Power Up for Parents, the findings suggest that recruitment modifications are needed to enhance the feasibility of collecting follow-up data before scaling up to a fully powered randomized controlled trial. On the basis of the Go or No-Go criteria, only 50% (6/12) of the sites successfully recruited participants, and only 38% (16/42) of parents completed follow-up measures. Nonetheless, health care practitioners and parents generally accessed and used the intervention. Themes describing appearance and functionality, perceived need and general helpfulness, accessibility and appropriateness, and a wish list for improvement emerged, providing valuable information to inform future development and refinement of the intervention. Conclusions Owing to the high attrition observed in the trial, proceeding directly to a full randomized controlled trial may not be feasible with this recruitment strategy. Nonetheless, with some minor adjustments and upgrades to the intervention, this pilot study provides a platform for future evaluations of Power Up for Parents. Trial Registration International Standard Randomized Controlled Trial Number (ISRCTN) 39238984; http://www.isrctn.com/ISRCTN39238984. International Registered Report Identifier (IRRID) RR2-10.2196/14571

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Parental decision making involvement and decisional conflict: a descriptive study

Cited by 45 publications

References 39 publications

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

Discrepancies in decision making preferences between parents and surgeons in pediatric surgery

Feasibility and Acceptability of a Digital Intervention to Support Shared Decision-making in Children’s and Young People’s Mental Health: Mixed Methods Pilot Randomized Controlled Trial

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