Playful strategies to foster the well-being of pediatric cancer patients in the Brazilian Unified Health System: a design thinking approach

Abstract Background Cancer care can negatively impact children’s subjective well-being. In this research, well-being refers to patients’ self-perception and encompasses their hospital and care delivery assessment. Playful strategies can stimulate treatment compliance and have been used to provide psychosocial support and health education; they can involve gamification, virtual reality, robotics, and healthcare environments. This study aims to identify how playfulness, whenever applicable, can be used as a strategy to improve the subjective well-being of pediatric cancer patients in the Brazilian Unified Health System. Methods Sixteen volunteers with experience in pediatric oncology participated in the study. They were physicians, psychologists, child life specialists, and design thinking professionals. They engaged in design thinking workshops to propose playful strategies to improve the well-being of pediatric cancer patients in the Brazilian Unified Health System. Data collection consisted of participatory observations. All activities were video recorded and analyzed through Thematic Analysis. The content generated by the volunteers was classified into two categories: impact of cancer care on children’s self-perception and children’s perceptions of the hospital and the care delivery. Results Volunteers developed strategies to help children deal with time at the hospital, hospital structure, and care delivery. Such strategies are not limited to using playfulness as a way of “having fun”; they privilege ludic interfaces, such as toys, to support psychosocial care and health education. They aim to address cancer and develop communication across families and staff in a humanized manner, educate families about the disease, and design children-friendly environments. Volunteers also generated strategies to help children cope with perceptions of death, pain, and their bodies. Such strategies aim to support understanding the meaning of life and death, comprehend pain beyond physicality, help re-signify cancer and children’s changing bodies, and give patients active voices during the treatment. Conclusions The paper proposes strategies that can improve the well-being of pediatric cancer patients in the Brazilian Unified Health System. Such strategies connect children’s experiences as inpatients and outpatients and may inform the implementation of similar projects in other developing countries.

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Areas for quality improvement in pediatric supportive oncology services.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.e22022 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. e22022-e22022

Author(s):

Jennifer Reichek ◽

Christine B. Weldon ◽

Rani Ganesan ◽

Eugene Suh ◽

Dipti Dighe ◽

...

Keyword(s):

Quality Improvement ◽

Pediatric Cancer ◽

Cancer Care ◽

Care Delivery ◽

Institute Of Medicine ◽

Supportive Services ◽

Care Community ◽

Pediatric Cancer Patients ◽

Survey Results ◽

Supportive Oncology

e22022 Background: In 2013, the Institute of Medicine report recommended that supportive oncology services be initiated at time of diagnosis. Providers of pediatric cancer care in the Chicagoland community, supported by The Coleman Foundation, sought to define areas for quality improvement of supportive oncology delivery to children. Methods: Focus groups and surveys with clinicians providing pediatric cancer care and supportive services at 14 sites were used to prioritize areas needing improvement. Results: 100% (14/14) of sites participated. Of the eligible sites, 6 were pediatric cancer treatment sites and 8 cancer care community organizations. Sites demonstrated consistent agreement for 8 of the 12 areas of focus for improvement. Over 50% of sites reported areas of focus (table) as important or very important. Conclusions: Sites identified the need for quality improvement in delivery of psychosocial, survivorship and palliative care for pediatric cancer patients. Survey results demonstrate a need for collaboration and efforts to guide care delivery improvement across sites. [Table: see text]

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Differences in Emotional Well-Being and Communication Styles Between Mothers and Fathers of Pediatric Cancer Patients

Journal of Psychosocial Oncology ◽

10.1300/j077v05n03_06 ◽

1988 ◽

Vol 5 (3) ◽

pp. 121-131 ◽

Cited By ~ 21

Author(s):

Johanna Shapiro ◽

Sally Shumaker

Keyword(s):

Cancer Patients ◽

Pediatric Cancer ◽

Well Being ◽

Communication Styles ◽

Mothers And Fathers ◽

Pediatric Cancer Patients

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Effective Communication for Newly Diagnosed Pediatric Patients With Cancer: Considerations for the Patients, Family Members, Providers, and Multidisciplinary Team

American Society of Clinical Oncology Educational Book ◽

10.1200/edbk_238181 ◽

2019 ◽

pp. 573-581 ◽

Cited By ~ 1

Author(s):

Sarah Dobrozsi ◽

Amy Trowbridge ◽

Jennifer W. Mack ◽

Abby R. Rosenberg

Keyword(s):

Communication Skills ◽

Pediatric Cancer ◽

Multidisciplinary Team ◽

Cancer Care ◽

Care Delivery ◽

Effective Communication ◽

Well Being ◽

Medical Team ◽

High Quality ◽

Personalized Care

Hearing that a child has been diagnosed with cancer is invariably difficult for both patients and their caregivers. Effective communication among patients, caregivers, and medical teams is necessary not only to deliver information and facilitate cancer care delivery but also to support patient and family coping and well-being. In this review, we focus on early communication in pediatric oncology care to (1) highlight the importance of communication between clinicians and patients and within the medical team and (2) describe resources and opportunities for clinicians to improve communication skills. For example, communication between patients and the medical team has several core functions, including the development of shared knowledge and decision-making and the formation of a therapeutic relationship. High-quality communication, regardless of the news being shared, supports and facilitates patient and parent adjustment to diagnosis, hope, and trust. Communication within the medical team supports the delivery of high-quality, personalized care. Despite these critical roles of communication in pediatric cancer care and evidence suggesting communication skills can be learned, formal training is limited. Resources include educational efforts, practical tools, and specific strategies to enhance systematic multidisciplinary team communication. Taken together, continued recognition of the importance of communication in pediatric cancer care has the potential to improve patient, family, and clinician experiences.

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Tobacco use among pediatric cancer patients: recommendations for developing clinical smoking interventions.

Journal of Clinical Oncology ◽

10.1200/jco.1997.15.6.2194 ◽

1997 ◽

Vol 15 (6) ◽

pp. 2194-2204 ◽

Cited By ~ 19

Author(s):

V L Tyc ◽

M M Hudson ◽

P Hinds ◽

V Elliott ◽

M Y Kibby

Keyword(s):

Cancer Patients ◽

Tobacco Use ◽

Pediatric Cancer ◽

Health Care Professionals ◽

Care Delivery ◽

Smoking Prevention ◽

Current Status ◽

Adolescent Cancer ◽

Pediatric Cancer Patients ◽

Successful School

PURPOSE AND METHODS: The current status of tobacco use among young cancer patients and the acute and chronic complications associated with tobacco use in these patients is reviewed. RESULTS AND CONCLUSION: Studies report that adolescent cancer survivors use tobacco as much as their peers who have never been treated for cancer, despite the adverse consequences of engaging in this unhealthy habit. Health care professionals have the opportunity and responsibility to incorporate tobacco counseling as a routine component of medical care delivery. Nurse/physician-delivered smoking interventions have been found to promote smoking cessation in adults, although little effort has been devoted to the development of similarly effective smoking interventions for pediatric cancer patients who smoke. Components of existing smoking prevention/cessation curricula from successful school-based interventions and physician-delivered smoking interventions can be adapted and tailored to pediatric cancer patients in medical settings. Smoking interventions that educate patients about their increased vulnerability to tobacco-related consequences, relative to their healthy peers, may have an enhanced impact. Guidelines for conducting a comprehensive assessment of tobacco use and implementing smoking interventions with pediatric cancer patients is provided. Strategies for modifying the cancer patient's perceived vulnerability to tobacco-related consequences is also discussed.

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Areas for quality improvement in pediatric supportive oncology services.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.31_suppl.146 ◽

2017 ◽

Vol 35 (31_suppl) ◽

pp. 146-146

Author(s):

Jennifer Reichek ◽

Christine B. Weldon ◽

Eugene Suh ◽

Julia Rachel Trosman ◽

Stacy D. Sanford ◽

...

Keyword(s):

Quality Improvement ◽

Pediatric Cancer ◽

Cancer Care ◽

Care Delivery ◽

Institute Of Medicine ◽

Supportive Services ◽

Care Community ◽

Pediatric Cancer Patients ◽

Survey Results ◽

Supportive Oncology

146 Background: In 2013, the Institute of Medicine report recommended that supportive oncology services be initiated at time of diagnosis. Providers of pediatric cancer care in the Chicagoland community, supported by The Coleman Foundation, sought to define areas for quality improvement of supportive oncology delivery to children. Methods: Focus groups and surveys with clinicians providing pediatric cancer care and supportive services at 14 sites were used to prioritize areas needing improvement. Results: 100% (14/14) of sites participated. Of the eligible sites, 6 were pediatric cancer treatment sites and 8 cancer care community organizations. Sites demonstrated consistent agreement for 8 of the 12 areas of focus for improvement. Over 50% of sites reported areas of focus (table) as important or very important. Conclusions: Sites identified the need for quality improvement in delivery of psychosocial, survivorship and palliative care for pediatric cancer patients. Survey results demonstrate a need for collaboration and efforts to guide care delivery improvement across sites. [Table: see text]

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Origin-destination flows in chemotherapy for breast cancer in Brazil: implications for pharmaceutical services

Ciência & Saúde Coletiva ◽

10.1590/1413-81232018243.10272017 ◽

2019 ◽

Vol 24 (3) ◽

pp. 1153-1164 ◽

Cited By ~ 1

Author(s):

Mário Jorge Sobreira da Silva ◽

Enirtes Caetano Prates Melo ◽

Claudia Garcia Serpa Osorio-de-Castro

Keyword(s):

Breast Cancer ◽

Health System ◽

Cancer Patients ◽

Cancer Care ◽

Ecological Study ◽

Pharmaceutical Services ◽

Breast Cancer Patients ◽

Breast Cancer Chemotherapy ◽

Unified Health System ◽

Outpatient Chemotherapy

Abstract This study maps and analyzes patient flows for breast cancer chemotherapy in order to identify the potential implications for organization of pharmaceutical services in the cancer care network. An ecological study design sought to correlate the place of residence with place of care for breast cancer patients. All chemotherapy procedures financed by Brazil’s Unified Health System (SUS) and performed from January to December 2013 were included. Flows were mapped using TerraView® software. A total of 1 347 803 outpatient chemotherapy procedures were delivered by 243 cancer care units located in 156 municipalities. Seventeen cities concentrated approximately 50.0 % of the procedures. A total of 8 538 origin-destination flows were generated and 49.2% of procedures were performed in services located outside the municipality in which the patient resided. Context challenges, related to inequality of access to chemotherapy and hindrances in planning and management of pharmaceutical services, were discussed.

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The landscape of cardiovascular care in pediatric cancer patients and survivors: a survey by the ACC Pediatric Cardio-Oncology Work Group

Cardio-Oncology ◽

10.1186/s40959-019-0051-8 ◽

2019 ◽

Vol 5 (1) ◽

Cited By ~ 2

Author(s):

Thomas D. Ryan ◽

William L. Border ◽

Carissa Baker-Smith ◽

Ana Barac ◽

Matthew J. Bock ◽

...

Keyword(s):

Childhood Cancer ◽

Cancer Patients ◽

Pediatric Cancer ◽

Work Group ◽

Care Delivery ◽

Evaluation Process ◽

Cardiac Risk Factor ◽

Lv Function ◽

Pediatric Cancer Patients ◽

Cardiovascular Care

Abstract Objective To enhance the understanding of cardiovascular care delivery in childhood cancer patients and survivors. Study design A 20-question survey was created by the Pediatric Cardio-oncology Work Group of the American College of Cardiology (ACC) Cardio-oncology Section to assess the care, management, and surveillance tools utilized to manage pediatric/young adult cardio-oncology patients. The survey distribution was a collaborative effort between Cardio-oncology Section and membership of the Adult Congenital and Pediatric Cardiology Section (ACPC) of the ACC. Results Sixty-five individuals, all self-identified as physicians, responded to the survey. Most respondents (n = 58,89%) indicated childhood cancer patients are regularly screened prior to and during cancer therapy at their centers, predominantly by electrocardiogram (75%), standard echocardiogram (58%) and advanced echocardiogram (50%) (i.e. strain, stress echo). Evaluation by a cardiologist prior to/during therapy was reported by only 8(12%) respondents, as compared to post-therapy which was reported by 28 (43%, p < 0.01). The most common indications for referral to cardiology at pediatric centers were abnormal test results (n = 31,48%) and history of chemotherapy exposure (n = 27,42%). Of note, during post-treatment counseling, common cardiovascular risk-factors like blood pressure (31,48%), lipid control (22,34%), obesity & smoking (30,46%) and diet/exercise/weight loss (30,46%) were addressed by fewer respondents than was LV function (72%). Conclusions The survey data demonstrates that pediatric cancer patients are being screened by EKG and/or imaging prior to/during therapy at most centers. Our data, however, highlight the potential for greater involvement of a cardiovascular specialist for pre-treatment evaluation process, and for more systematic cardiac risk factor counseling in posttreatment cancer survivors.

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