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Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.

ABSTRACT: BACKGROUND:Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP. PROCEDURE:We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for < 7 months. Interviews sought to elicit perceived communication gaps regarding cancer care and inform D100 development. Following qualitative analysis of interview responses, we developed a three-part D100 conversation tool consisting of a preparatory family worksheet, a conversation guide, and a family summary sheet. We presented the tool during interviews and a focus group with pediatric oncology providers and revised it to incorporate provider input. RESULTS:Twenty-two stakeholders (six parents, five adolescents, and 11 providers) participated in interviews or a focus group. Parents and patients perceived insufficient anticipatory guidance as the most important communication gap. They also reported sometimes withholding worries and cancer-related beliefs. Meanwhile, oncology providers worried about "opening Pandora's Box" and limited clinical time. Additionally, providers reported employing indirect methods such as surmising to determine families' needs and relying on psychosocial clinicians to engage families around potentially "taboo" issues of emotional coping and spirituality. CONCLUSION:Creating a communication occasion (D100), ensuring complementary disciplinary expertise through joint participation by oncologists and psychosocial clinicians, and providing a conversation tool to prompt disclosure by families and facilitate anticipatory guidance may ameliorate existing communication gaps during the ECTP.

SUBMITTER: Feraco AM

PROVIDER: S-EPMC5911188 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature

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Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.

Feraco Angela M AM Brand Sarah R SR Gagne Joshua J Sullivan Amy A Block Susan D SD Wolfe Joanne J

Pediatric blood & cancer 20180131 6

<h4>Background</h4>Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP.<h4>Procedure</h4>We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for < 7 months. Intervi ...[more]

PMID: 29384265

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Project description:BACKGROUND:Improving civil registration and vital statistics (CRVS) systems requires strengthening the capacity of the CRVS workforce. The improvement of data collection and diagnostic practices must be accompanied by efforts to ensure that the workforce has the skills and knowledge to assess the quality of, and analyse, CRVS data using demographic and epidemiological techniques. While longer-term measures to improve data collection practices must continue to be implemented, it is important to build capacity in the cautious use of imperfect data. However, a lack of training programmes, guidelines and tools make capacity shortages a common issue in CRVS systems. As such, any strategy to build capacity should be underpinned by (1) a repository of knowledge and body of evidence on CRVS, and (2) targeted strategies to train the CRVS workforce. MAIN TEXT:During the 4?years of the Bloomberg Philanthropies Data for Health (D4H) Initiative at the University of Melbourne, an extensive repository of knowledge and practical tools to support CRVS system improvements was developed for use by various audiences and stakeholders (the 'CRVS Knowledge Gateway'). Complementing this has been a targeted strategy to build CRVS capacity in countries that comprised two approaches - in-country or regional training and a visiting Fellowship Program. These approaches address the need to build competence in countries to collect, analyse and effectively use good quality birth and death data, and a longer-term need to ensure that local staff in countries possess the comprehensive knowledge of CRVS strategies and practices necessary to ensure sustainable CRVS development. CONCLUSION:The Knowledge Gateway is a dynamic, useful and long-lasting repository of CRVS knowledge for countries and development partners to use to formulate and evaluate CRVS development strategies. Capacity-building through in-country or regional training and the University of Melbourne D4H Fellowship Program will ensure that CRVS capacity and knowledge is developed and maintained, facilitating improvements in CRVS data systems that can be used by policymakers to support better decision-making in health.

Dataset Information

Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.

Publications

Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.

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