Parental Explicit Heuristics in Decision-making for Children With Life-threatening Illnesses

Renjilian, Chris B.; Womer, James; Carroll, Karen W.; Kang, Tammy I.; Feudtner, Chris

doi:10.1542/peds.2012-1957

Cited by 33 publications

(33 citation statements)

References 27 publications

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“…This may contribute to the lengthy decision process we observed, given that using more explicit heuristics, such as fitting unfamiliar decisions into familiar patterns or using “rules of thumb”, may lead to more efficient parental decision making. (38)…”

Section: Discussionmentioning

confidence: 99%

Evolution of Pediatric Chronic Disease Treatment Decisions

Lipstein

Britto

2015

Med Decis Making

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Background In the context of pediatric chronic conditions, patients and families are called upon repeatedly to make treatment decisions. However, little is known about how their decision making evolves over time. Objective To understand parents’ process for treatment decision making in pediatric chronic conditions. Methods We conducted a qualitative, prospective longitudinal study using recorded clinic visits and individual interviews. After obtaining consent from healthcare providers, parents and patients, clinic visits where treatment decisions were expected to be discussed were video-recorded. Parents then participated in sequential telephone interviews about their decision-making experience. Data were coded by two people and analyzed using framework analysis with sequential, time-ordered matrices. Results 21 families, including 29 parents, participated in video-recording and interviews. We found three dominant patterns of decision evolution. Each consisted of a series of decision events, including conversations, disease flares and researching of treatment options. Within all three patterns there were both constant and evolving elements of decision making, such as role perceptions and treatment expectations respectively. After parents made a treatment decision, they immediately turned to the next decision related to the chronic condition, creating an iterative cycle. Conclusion In this study, decision making was an iterative process occurring in three distinct patterns. Understanding these patterns and the varying elements of parents’ decision processes is an essential step towards developing interventions that are appropriate to the setting and capitalize on the skills families may develop as they gain experience with a chronic condition. Future research should also consider the role of children and adolescents in this decision process.

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Section: Discussionmentioning

confidence: 99%

Evolution of Pediatric Chronic Disease Treatment Decisions

Lipstein

Britto

2015

Med Decis Making

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“…14 More specifically, what individuals believe they need to do to be a loving or good parent might shape how they view their duties to their child and how they aim to conduct themselves. 15–17 In a qualitative study 18 of parents of children with incurable cancer, the parents reported in interviews that, in their view, a good parent remains at the child’s side, shows the child that she or he is cherished, makes unselfish decisions in the child’s best interest, and advocates for the child with the facility’s staff.…”

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confidence: 99%

Good-Parent Beliefs of Parents of Seriously Ill Children

et al. 2015

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IMPORTANCE Parents’ beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE To assess parents’ perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS A cross-sectional, discrete-choice experiment was conducted at a children’s hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent–attribute ratings, which we labeled as: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). Compared with the other groups, the child’s health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

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“…Parents making these decisions are often presented with complex information in the midst of complicated contexts. Parents are asked to make decisions that are value laden on their child's behalf when the child may be too young, too ill or cognitively unable to be actively involved in decision‐making or to make their wishes known in the present or ever . Parents need understandable information and may benefit from values clarification, both of which are targeted by DAs.…”

Section: Objectivesmentioning

confidence: 99%

Decision aids available for parents making end‐of‐life or palliative care decisions for children: A scoping review

Medeiros

Buckley

Metcalfe

et al. 2020

J Paediatrics Child Health

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Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Methods: Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citations, and one reviewed grey literature citations. Citation chaining via Scopus was conducted. Quality was assessed using IPDAS Collaboration Criteria. Results: After reviewing 18 671 database citations and 10 988 grey literature citations, 18 citations describing 11 decision aids remained. Decision aids targeted premature infants, children requiring airway management, children with cancer and children with scoliosis. Three aids underwent testing beyond initial development. Quality scores averaged 27 of 50 points. Conclusions: There are few high-quality decision aids available for use and a lack evidence of widespread clinical use. Additional research is needed to support systematic development and the use of decision aids with families.

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Parental Explicit Heuristics in Decision-making for Children With Life-threatening Illnesses

Cited by 33 publications

References 27 publications

Evolution of Pediatric Chronic Disease Treatment Decisions

Evolution of Pediatric Chronic Disease Treatment Decisions

Good-Parent Beliefs of Parents of Seriously Ill Children

Decision aids available for parents making end‐of‐life or palliative care decisions for children: A scoping review

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