Dataset Information

The evolution of regret: decision-making for parents of children with cancer.

ABSTRACT:

Purpose

Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal regret.

Methods

Prospective, questionnaire-based cohort study of parents of children with cancer at two academic pediatric hospitals. Parents reported decisional regret at diagnosis, 4 months, and 12 months.

Results

At baseline, 13% of parents (21/158) reported heightened regret, 11% (17/158) at 4 months (p?=?0.43, McNemar's test relative to baseline), and 11% (16/158) at 12 months (p?=?0.35 relative to baseline and p?=?0.84 relative to 4 months). In multivariable analysis using generalized estimating equations adjusted for the time point of survey completion, heightened regret was associated with non-white race/ethnicity (OR 11.57, 95% CI 3.53 to 41.05, p?ConclusionsA small, significant proportion of parents experience heightened regret throughout the first year of their child's cancer treatment; non-white parents are at higher risk. Effective communication may protect against regret.

SUBMITTER: Sisk BA

PROVIDER: S-EPMC6923624 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Publications

The evolution of regret: decision-making for parents of children with cancer.

Sisk Bryan A BA Kang Tammy I TI Mack Jennifer W JW

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20190620 3

<h4>Purpose</h4>Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal ...[more]

PMID: 31297592

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Project description:Objectives: The mainstream position on regret in psychological literature is that its necessary conditions are agency and responsibility, that is, to choose freely but badly. Without free choice, other emotions, such as disappointment, are deemed to be elicited when the outcome is worse than expected. In two experiments, we tested the opposite hypothesis that being forced by external circumstances to choose an option inconsistent with one's own intentions is an important source of regret and a core component of its phenomenology, regardless of the positivity/negativity of the post-decision outcome. Along with regret, four post-decision emotions - anger toward oneself, disappointment, anger toward circumstances, and satisfaction - were investigated to examine their analogies and differences to regret with regard to antecedents, appraisals, and phenomenological aspects. Methods: Through the scenario methodology, we manipulated three variables: choice (free/forced), outcome (positive/negative), and time (short/long time after decision-making). Moreover, we investigated whether responsibility, decision justifiability, and some phenomenological aspects (self-attribution, other attribution, and contentment) mediated the effect exerted by choice, singularly or in interaction with outcome and time, on the five emotions. Each study was conducted with 336 participants, aged 18-60. Results: The results of both studies were similar and supported our hypothesis. In particular, regret elicited by forced choice was always high, regardless of the valence of outcome, whereas free choice elicited regret was high only with a negative outcome. Moreover, regret was unaffected by responsibility and decision justifiability, whereas it was affected by the three phenomenological dimensions. Conclusion: Our results suggest that (1) the prevailing theory of regret is too binding, since it posits as necessary some requirements which are not; (2) the antecedents and phenomenology of regret are broader than it is generally believed; (3) decision-making produces a complex emotional constellation, where the different emotions, singularly and/or in combination, constitute the affective responses to the different aspects of decision-making.

Project description:BACKGROUND:Satisfaction with medical decisions among patients with cancer is associated not only with the results of decisions they make but also with how they make those decisions. To elucidate the decision-making process among Japanese women with breast cancer, we explored the correlates of regret with patients' treatment decision-making. METHODS:An Internet-based cross-sectional survey was utilized. Japanese women (N?=?467) who self-reported that they had been diagnosed with stage 0-II breast cancer participated. Data regarding their decisional role (active, collaborative, or passive) in treatment decision-making, their most regrettable experience regarding their decision-making, the importance of various factors related to decision-making at the time, and clinical and sociodemographic factors were obtained. A forced-entry logistic regression analysis was performed on the likelihood that patients would have some regrets regarding the decision-making process. RESULTS:About half the women expressed some regret (51.4%). Women who had a mastectomy were significantly more likely to have regret than women who had breast conserving surgery. Correlates of regret differed by surgical type. For women who had a mastectomy, those who were aged ?50?years when diagnosed, or who made their decisions collaboratively with their doctors were significantly less likely to have regret with the decision-making. For women who had breast conserving surgery, those who worked on a contract or part-time basis or whose decision-making roles matched their preferred role were significantly less likely to have regret. Among women who reported some regret, 23.8% expressed that their most regrettable experience concerned gathering information, while 21.3% regretted not consulting with others. For women who were diagnosed at a younger age, the influence on their sex life and pregnancy and childbirth was more important when making their treatment decisions than for women diagnosed an older age. CONCLUSIONS:Approximately half of the Japanese women with breast cancer in this study reported some regret in the treatment decision-making process. Effective participation in decision-making differed by surgical types. Additionally, women who are diagnosed with breast cancer at a relatively younger age, as compared to those who are older, may need additional information and support regarding their sex life and fertility after cancer treatment.

Project description:BackgroundBeginning at a young age, children with cystic fibrosis (CF) embark on demanding care regimens that pose challenges to parents. We examined the extent to which clinical, demographic and psychosocial features inform patterns of adherence to pulmonary therapies and how these patterns can be used to develop clinical personas, defined as aspects of adherence barriers that are presented by parents and/or perceived by clinicians, in order to enhance personalized CF care delivery.MethodsWe undertook an explanatory sequential mixed-methods study consisting of i) multivariate clustering to create clusters corresponding to parental adherence patterns (quantitative phase); ii) parental participant interviews to create clinical personas interpreted from clustering (qualitative phase). Clinical, demographic and psychosocial features were used in supervised clustering against clinical endpoints, which included adherence to airway clearance and aerosolized medications and self-efficacy score, which was used as a feature for modeling adherence. Clinical implications were developed for each persona by combing quantitative and qualitative data (integration phase).ResultsThe quantitative phase showed that the 87 parent participants were segmented into three distinct patterns of adherence based on use of aerosolized medication and practice of airway clearance. Patterns were primarily influenced by self-efficacy, distance to CF care center and child BMI percentile. The two key patterns that emerged for the self-efficacy model were most heavily influenced by distance to CF care center and child BMI percentile. Eight clinical personas were developed in the qualitative phase from parent and clinician participant feedback of latent components from these models. Findings from the integration phase include recommendations to overcome specific challenges with maintaining treatment regimens and increasing support from social networks.ConclusionsAdherence patterns from multivariate models and resulting parent personas with their corresponding clinical implications have utility as clinical decision support tools and capabilities for tailoring intervention study designs that promote adherence.

Dataset Information

The evolution of regret: decision-making for parents of children with cancer.

Purpose

Methods

Results

Publications

The evolution of regret: decision-making for parents of children with cancer.

Similar Datasets

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