Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology

PURPOSE: Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns. METHODS: Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis. RESULTS: Nearly all parents identified negative communication experiences (n = 76). We identified four categories of contributors to negative experiences: individual (n = 68), team (n = 26), organization (n = 46), and greater health care system (n = 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n = 65), insufficient understanding (n = 48), decreased trust or confidence (n = 37), inconvenience (n = 36), medical harm (n = 23), decreased self-confidence (n = 17), decreased emotional support (n = 13), decreased engagement (n = 9), false hope (n = 9), decreased hope (n = 7), financial insult (n = 7), and decreased access to resources (n = 3). We identified five categories of supportive responses from clinicians: exploring (n = 8), acknowledging (n = 17), informing (n = 27), adapting (n = 27), and advocating (n = 18). Parents often increased their own advocacy on behalf of their child (n = 47). Parents also identified the need for parental engagement in finding solutions (n = 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance. CONCLUSION: Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions.

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The second victim phenomenon in health care: A literature review

Scandinavian Journal of Public Health ◽

10.1177/1403494819855506 ◽

2019 ◽

Vol 48 (6) ◽

pp. 629-637 ◽

Cited By ~ 1

Author(s):

Puvashnee Nydoo ◽

Basil J. Pillay ◽

Thajasvarie Naicker ◽

Jagidesa Moodley

Keyword(s):

Health Care ◽

Health Care Professional ◽

Health Care Professionals ◽

Obstetric Care ◽

Negative Consequences ◽

Post Traumatic Stress ◽

Negative Effects ◽

Substantial Impact ◽

Second Victim ◽

Adverse Medical Events

Aim: This study aimed to explore the knowledge on the second victim phenomenon (SVP) in health care, more specifically within the speciality of obstetrics. Methods: An extensive electronic search of multiple databases, with additional hand searching of the reference lists of pertinent articles regarding the SVP, was performed from May 2017 to December 2018. Results: A review of the literature suggests consistent evidence of the substantial impact of adverse medical events on health-care professionals across a range of specialities. The effects of an adverse medical event for the health-care professional are ominous, with many experiencing feelings of sadness, guilt and anxiety, as well as some displaying symptoms consistent with post-traumatic stress disorder. Negative effects may be exacerbated for health-care professionals in the case of an adverse maternal event due to its highly sensitive and dramatic nature, involving both maternal and neonatal lives. The provision of timely and effective support at the individual and more specifically the organisational level has been positively correlated with a second victim’s recovery. Yet, limited organisations have formal support interventions designed specifically for the needs of the second victim. Conclusions: It is evident that the consequences of adverse medical events on health-care professionals can be intense and numerous. The unique nature and high sensitivities surrounding obstetric care have the potential to exacerbate the negative consequences for the health-care professional following an adverse event. Still, there remains a dearth of information of the extent of adverse medical events and the SVP in the speciality of obstetrics.

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Ethical Issues in Concussion Management

International Journal of Athletic Therapy & Training ◽

10.1123/ijatt.2016-0020 ◽

2017 ◽

Vol 22 (1) ◽

pp. 24-32 ◽

Cited By ~ 1

Author(s):

Timothy Neal

Keyword(s):

Health Care ◽

Health Care Professionals ◽

Sports Medicine ◽

Ethical Issues ◽

Well Being ◽

Negative Consequences ◽

Ethical Challenges ◽

Optimal Care ◽

Concussion Management

Athletic health care professionals, team physicians, and athletic trainers have an ethical obligation to safeguard the short- and long-term well-being of the athlete they care for. The potential long-term negative consequences to the student-athlete’s physical, cognitive, and mental health as a result of concussions and their mismanagement is a reality. How the athletic health care professional attends to this top priority of providing optimal health care to the concussed athlete while navigating the mitigating circumstances and influences of nonmedical entities found in competitive athletics is one of the great ethical challenges of present day sports medicine. Effectively navigating the complex challenges faced by athletic health care professionals is as important as the care delivered. Understanding the ethical challenges faced by athletic health care decision makers should be a central focus in providing the optimal care the patient deserves.

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Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers

Journal of Pediatric Oncology Nursing ◽

10.1177/1043454218764885 ◽

2018 ◽

Vol 35 (4) ◽

pp. 247-256 ◽

Cited By ~ 2

Author(s):

Jessica L. Spruit ◽

Cynthia J. Bell ◽

Valerie B. Toly ◽

Maryjo Prince-Paul

Keyword(s):

Health Care ◽

Palliative Care ◽

Health Care Providers ◽

Pediatric Oncology ◽

Health Care Professionals ◽

Care Delivery ◽

Advanced Practice ◽

Care Providers ◽

The Public ◽

Patients With Cancer

The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement. Data analysis reveals significant variability when comparing respondents from professional roles and practice environments. Despite progress in PPC availability, care delivery remains incongruent with current recommendations. Knowledge gained from this study emphasizes the important role for all health care providers in advocating for support of PPC programs, educating the public, and committing to intentional involvement of PPC services while caring for pediatric oncology patients.

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End-of-life decision-making in pediatric oncology

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780199332342.003.0059 ◽

2015 ◽

pp. 894-908

Author(s):

Pamela S. Hinds ◽

Linda L. Oakes ◽

Wayne L. Furman

Keyword(s):

Health Care ◽

Decision Making ◽

End Of Life ◽

Pediatric Oncology ◽

Current Literature ◽

Health Care Professionals ◽

Healthcare Professionals ◽

End Of Life Decision ◽

Life Decision ◽

Use Of Health Care

The purposes of this chapter are to offer a review of the current literature (both clinical and research-based) on end-of-life decision-making in pediatrics, with a special emphasis on pediatric oncology, and to offer guidelines for the use of health-care professionals in assisting children, adolescents, their parents, and other healthcare professionals in making such decisions.

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Real-Time Access to Electronic Health Record via a Patient Portal: Is it Harmful? A Retrospective Observational Study

Journal of Medical Internet Research ◽

10.2196/13622 ◽

2020 ◽

Vol 22 (2) ◽

pp. e13622 ◽

Cited By ~ 1

Author(s):

Savannah IR van Kuppenveld ◽

Harmieke van Os-Medendorp ◽

Nicole AM Tiemessen ◽

Johannes JM van Delden

Keyword(s):

Health Care ◽

Electronic Health Record ◽

Real Time ◽

Health Care Professionals ◽

Medical Information ◽

Health Record ◽

Patient Portal ◽

Test Results ◽

Negative Consequences ◽

Negative Experiences

Background The rapid implementation of patient portals, through which patients can view their electronic health record, creates possibilities for information exchange and communication between patients and health care professionals. However, real-time disclosure of test results and clinical reports poses a source of concern. Objective This study aimed to examine negative experiences resulting from real-time disclosure of medical information through a patient portal. Methods Data were collected over a 2-year period in 4 datasets consisting of incidents reported by health care professionals, complaints of patients, patient issues at a portal helpdesk, and a survey among health care professionals. Incidents, complaints, issues, and answers on the survey were counted and analyzed through an iterative process of coding. Results Within the chosen time frame of 2 years, on average, 7978 patients per month logged into the portal at least once. The amount of negative incidents and complaints was limited. A total of 6 incidents, 4 complaints, and 2506 issues at the helpdesk concerning the patient portal were reported, of which only 2, 1, and 3 cases of these respective databases concerned real-time disclosure of medical information through the patient portal. Moreover, 32 out of 216 health care professionals reported patients that had negative experiences with real-time disclosure. Most negative consequences concerned confused and anxious patients when confronted with unexpected or incomprehensible results. Conclusions Real-time access through a patient portal did not substantially result in negative consequences. The negative consequences that did occur can be mitigated by adequate preparation and instruction of patients concerning the various functionalities of the patient portal, real-time disclosure of test results in particular, and can also be managed through educating health care professionals about the patient portal and making adjustments in the daily practice of health care professionals.

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Human flourishing in adolescents with cancer: Experiences of pediatric oncology health care professionals

Journal of Pediatric Nursing ◽

10.1016/j.pedn.2020.12.012 ◽

2021 ◽

Vol 59 ◽

pp. 10-18

Author(s):

Eunji Cho ◽

Lynne E. Baker-Ward ◽

Sophia K. Smith ◽

Raymond C. Barfield ◽

Sharron L. Docherty

Keyword(s):

Health Care ◽

Pediatric Oncology ◽

Health Care Professionals ◽

Human Flourishing

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Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms

Journal of Pediatric Oncology Nursing ◽

10.1177/1043454216646532 ◽

2016 ◽

Vol 34 (2) ◽

pp. 98-105 ◽

Cited By ~ 7

Author(s):

Argerie Tsimicalis ◽

Sylvie Le May ◽

Jennifer Stinson ◽

Janet Rennick ◽

Marie-France Vachon ◽

...

Keyword(s):

Health Care ◽

Health Care Professionals ◽

Parental Engagement ◽

Communication Tool ◽

Translation Process ◽

Interactive Communication ◽

Linguistic Validation ◽

Cancer Symptoms ◽

Forward Translation ◽

French Speaking

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.

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Parents' Experiences of Receiving Professional Support Through Extended Home Visits During Pregnancy and Early Childhood—A Phenomenographic Study

Frontiers in Public Health ◽

10.3389/fpubh.2021.578917 ◽

2021 ◽

Vol 9 ◽

Author(s):

Caroline Bäckström ◽

Stina Thorstensson ◽

Jessica Pihlblad ◽

Anna-Carin Forsman ◽

Margaretha Larsson

Keyword(s):

Health Care Professionals ◽

Early Stage ◽

Home Visits ◽

Cost Effective ◽

Professional Support ◽

Structured Interviews ◽

Self Confidence ◽

Parents And Children ◽

Vulnerable Families ◽

Swedish Society

Background: While becoming a parent can be challenging for all, it can particularly be challenging for those parents and children who are in a vulnerable situation—e.g., in families whose members have problems related to health, relationships, or socioeconomic status. It is essential for health care professionals to identify the more vulnerable families at an early stage. Home visits are one cost-effective way of identifying and supporting such families. This study describes the parental experiences of an intervention that involves professional support in the form of extended home visits. The aim of the study is to describe the parents' understanding of their experiences of receiving professional support through extended home visits both during pregnancy and the first 15 months of their child's life.Methods/Design: A phenomenographic approach was used. Semi-structured interviews were conducted with 12 parents who had received the intervention. The interviews were analyzed using the seven-step phenomenography model described by Sjöström and Dahlgren.Results: The following three descriptive categories emerged from the analysis: (1) conceptions concerning the meaning of the physical environment, (2) conceptions concerning extended home visits promoting feelings of self-confidence in the parental role, and (3) conceptions concerning extended home visits promoting parental participation and relations.Conclusion and Clinical Implications: Extended home visits as a form of professional support appear to promote parental self-confidence in parenting ability, giving parents a feeling of security that facilitates conversation with professionals. Children and their entire families had natural roles during home visits, which allowed the children to behave more characteristically. Furthermore, the home visits were understood to facilitate social support through social activities at the child health center as well as integration into Swedish society for migrant parents. Professional support should be adjusted to the unique individual needs of parents, which demands a variety of supportive interventions—for example, reorganizing one or two of the regular clinical visits currently being scheduled as home visits instead.

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Determinants of Knowledge, Attitudes, and Practices of Frontline Health Care Givers During the First Wave of Covid-19 in Africa: a Multi-centers Online Cross-sectional

10.21203/rs.3.rs-386995/v1 ◽

2021 ◽

Author(s):

Larrey Kasereka Kamabu ◽

Hervé Monka Lekuya ◽

Bienvenu Muhindo Kasusula ◽

Franck Katembo Sikakulya ◽

Moise Muhindo Valimungighe ◽

...

Keyword(s):

Health Care ◽

Health Care Professionals ◽

Statistical Significance ◽

Self Esteem ◽

Sub Saharan Africa ◽

African Countries ◽

Related Factors ◽

Cross Sectional ◽

Self Confidence ◽

Care Givers

Abstract Background: During its first wave in sub-Saharan Africa, there was insufficient understanding of the new pandemic of coronavirus disease 2019 (COVID-19) among frontline health care professionals that has led to a misidentification, and mistreatment of affected patients, with a potential risks of contacting and spreading the disease. This study was carried out to determine the knowledge, attitude, and practices (KAP) of frontline health care givers (HCGs) towards COVID-19 in Africa and their related factors.Methods: This was a multi-centers online cross-sectional study conducted over a 3-months study-period using a google survey link among front lines African HCGs in the COVID-19 response units within 28 African countries. Bivariate and Multivariate logistic regression were used to assess the associations between co-variates. Statistical significance was set at p≤ 0.05 and 95% confidence interval. Results: There a total of 518 out of 588 approached HCGs participated in the study from 28 African countries. Overall, 496 (96%) had bad practice score, and 405 (78%) had positive attitude regarding COVID-19. The related factors of KAP towards COVID-19 identified were the lack of self- esteem and self-confidence in the management of COVID-19 (aOR: - 0.17, 95% CI=-0.766 to -4.33, p >0.05), Ignorance (aOR: 1.55, 95% CI=1.003 to 2.402, p <0.048), lack of knowledge updates on COVID-19 (aOR: 1.81, 95% CI=1.105 to 2.951, p <0.018).Conclusions: Majority of the frontline HCG has an overall good knowledge and attitude towards the disease across the African continents regardless of their level of study. However, the KAP is influenced negatively by the lack of self-esteem, self- confidence, ignorance, and insufficiency of frequent update of COVID-19 information. Promoting psychological support in addition to regular trainings could help to enhance the KAP of frontline HCG in African region.

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Implementation of Clinical Assistants in a Pediatric Oncology Department: an Activity and Clinical Time Release Analysis

10.20944/preprints202111.0399.v1 ◽

2021 ◽

Author(s):

Cristina Adroher ◽

Celia Calvo ◽

Laura Pavon ◽

Ricard Casadevall ◽

Esther Alvarez ◽

...

Keyword(s):

Health Care ◽

Pediatric Oncology ◽

Health Care Professionals ◽

Added Value ◽

Lower Productivity ◽

Release Analysis ◽

The Cost ◽

Administrative Tasks ◽

The Impact

Background: There is a high bureaucratic and administrative burden associated with health care tasks (test requesting, visits scheduling, supporting documents provision) that has historically largely fallen on health care professionals, which is one among the factors contributing to low job satisfaction and lower productivity. Incorporating new professional roles that help to better respond to the needs of both patients and professionals can increase the quality and efficiency of service provision. Objective: To evaluate the impact of the clinical assistant’s introduction in the Sant Joan de Déu Barcelona Children’s Hospital’s pediatric oncology department, in terms of displacement of activity loads carried out by this new professional role and the consequent time freed up for physicians. Methodology: Observational and retrospective study using administrative data based on the analysis of the type of activity performed by clinical assistants and the measurement of the time freed up in favor of the physicians, based on in situ timekeeping, to approximate the potential skill mix productivity increase. Results: Since its implementation in the pediatric oncology department, clinical assistants have performed 13,553 requests (69.93% of the total), representing a total saving of 266.83 hours or 6.67 workweeks of 40 hours. They performed 74.25% of outpatient surgical requests in the oncology department, 87.5% of day hospital requests and 54.13% of total requests in the outpatient consultations area. Conclusion: The introduction of clinical assistants in the oncology department could be efficient to the extent that it displaces a good part of the bureaucratic and administrative tasks previously performed by health care professionals. This delegation allows them to work more closely to the maximum of their competences and the physicians to have more time for higher added value clinical tasks. In terms of efficiency, this role change enables to optimize the clinical process, reducing the cost by 56% compared to the conventional model.

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