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Optimal care for the child with cancer: A summary statement from the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology
Abstract
Since its foundation in 1991, the SIOP Working Committee on Psychosocial Issues in Paediatric Oncology1 has developed and published 12 sets of Guidelines for health-care professionals treating children with cancer and their families. Those elements considered essential in the process of cure and care of children with cancer are summarized in this document as a formal statement, developed at the 2007 SIOP annual meeting in Mumbai. Elaboration of the concepts with detailed strategies for practice can be found in the referenced guidelines [1-12] and in a companion publication [13]. This article is a summary of what practitioners considered critical elements in the optimal care of the child with cancer, with the goal of stimulating a broader application of these elements throughout the SIOP membership.
... Approximately 11% of children with cancer die from their disease, but little is known about the barriers surrounding end of life communication or how best to support these conversations among caregivers and their terminally ill child. Evidence-based guidelines for best practices and optimal care in oncology recommend open physician communication that is maintained and improved near the end of life (Jankovic et al., 2008;Spinetta et al., 2009;Wiener et al., 2015). Previous work has proposed that providers support caregivers in their endeavors to discuss end of life with their child (Himelstein et al., 2004;Jalmsell et al., 2015). ...
... Previous work has proposed that providers support caregivers in their endeavors to discuss end of life with their child (Himelstein et al., 2004;Jalmsell et al., 2015). Open and honest communication with children regarding end of life is now the standard of care, given extant literature providing evidence that it may prevent distrust and internalizing problems for children, as well as improving grief outcomes among their caregivers (Kreicbergs et al., 2004;Beale et al., 2005;Jankovic et al., 2008;Spinetta et al., 2009;Bates and Kearney, 2015;Aldridge et al., 2017). Yet, limited work has examined communication between caregivers and their terminally ill child regarding prognosis and end of life. ...
... Thus, it is important to better understand the factors associated with how communication occurs surrounding prognosis or the death of a child and to obtain guidance from caregivers on how providers can best facilitate these difficult conversations. Given the psychosocial standard of care calling for clear and open end of life communication in pediatric oncology (Jankovic et al., 2008;Spinetta et al., 2009;Wiener et al., 2015), our aims were to examine how often this communication occurs and to explore what factors predict end of life conversations between parents and their children who died of cancer. To inform best practices for interdisciplinary teams within palliative care, we also qualitatively explored the support from health-care providers that is preferred by caregivers for having these important conversations. ...
Objectives:
Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.
Methods:
Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis.
Results:
Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.
Significance of results:
Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
... Maintaining a child's education is a critical way to provide a sense of normalcy and help prevent the crushing isolation that many students with cancer have reported (Bessell, 2001;Spinetta et al., 2009;Gartin & Murdick, 2009). Research indicates that the needs of students with chronic health needs are not consistently addressed in public schools (Knauer et al., 2015;Selekman, 2017). ...
... 2. Share knowledge about the school community, explain school district's special education policies and procedures, and address family's questions and concerns (Friend & Bursuck, 2019). 3. Promote normalcy and the full integration of the child into school (Spinetta et al., 2009). ...
Due to medical advances, many students with pediatric cancer are able to attend school. The professional literature reflects the need for enhanced collaboration between medical and educational personnel to address the academic and health care needs of children undergoing cancer treatment and who may experience late effects throughout their academic careers. To promote effective educational services during and after treatment, it is crucial for multidisciplinary teams and families to collaborate effectively. Additionally, preservice and in-service teachers need training and support to meet the needs of students with cancer. Keywords: pediatric cancer, collaboration, hospital-based school liaison, school-based liaison, school psychologist, school nurse, classroom teacher
... Radiation therapy stops cancer cells from proliferating and dividing by destroying their DNA. Radiation can be used to treat the entire body when the cancer has spread widely, or it can be directed at a specific location of the body where the disease is located [88]. The radiation therapy used, as well as the amount and time of treatment, may vary based on the type and stage of the cancer as well as the patient's overall condition. ...
... Blood cancer can have a significant emotional and psychological impact on both patients and their families [87,88]. The diagnosis of blood cancer can be overwhelming, and patients may experience a range of emotions, including fear, anxiety, and depression [89,90]. ...
Leukaemia, lymphoma, and myeloma are among the serious and frequently fatal conditions that impact thousands of people each year. Genetics, environmental factors, and medical problems can all affect the risk of developing blood cancer, however, the precise causes are still not entirely known. Fatigue, unexpected weight loss, and frequent infections are examples of common blood cancer symptoms. In the course of the diagnosis process, blood tests, imaging tests, and bone marrow biopsies are frequently combined. Blood cancer therapies include chemotherapy, radiation therapy, stem cell transplant, targeted therapy, and immunotherapy. Supportive care is also important for managing symptoms and improving quality of life. Ongoing research is exploring new treatments and therapies for blood cancer, as well as ways to improve supportive care and personalize treatment plans. Blood cancer patients and their families have severe emotional and psychological effects that must not be ignored. For improving outcomes and raising the general standard of living for people affected by this condition, it is essential to address these needs.
... Most published articles refer to workrelated stress or burnout. 5,29,30 However, to increase the quality of patient care in oncology, it is essential to look at the care providers' relationship with their professional activity and in particular their PHW. The first objective of this study was thus to explore the relationships between the PHW of pediatric oncology care workers and 1 managerial determinants and 2 organizational determinants. ...
... Moreover, we found that health care providers' perception of quality of care was linked to their QWL and job satisfaction. Although the International Society of Pediatric Oncology has long recognized the importance of the psychological health of professionals working with sick children, 30 this is the first study, to our knowledge, providing empirical evidence supporting this claim. Our results are in line with studies showing a link between burnout among oncology physicians and quality of care, through indicators such as medical errors, lack of empathy, and patients' satisfaction with their medical care. ...
PURPOSE
Psychological health at work for care providers is an important issue, because they are directly involved in quality of patient care. Managerial and organizational determinants have been found to be indicators of psychological health at work. The main objective of this study was to explore the relationships between the psychological health at work of pediatric oncology care workers with managerial and organizational determinants and with quality of care.
MATERIALS AND METHODS
We performed regression analysis between psychological health at work (quality of work life [QWL], job satisfaction, and so on), managerial determinants (transformational leadership, perceived autonomy support), organizational determinants (organizational support, organizational justice, and participatory approach), and perceived quality of care.
RESULTS
Participants were 510 health care professionals working in French pediatric oncology centers. No significant differences in the psychological health at work of the participants were found based on age, sex, length of employment, or professional discipline. In simple regression, significant associations were found between psychological health at work with all managerial and organizational determinants. In multiple regression, a significant link was found between QWL and perceived organizational support (β = .21; P < .001), organizational justice (β = .20, P < .001), and overall participatory approach (β = .10; P < .02). Job satisfaction was also related to perceived organizational support (β = .16; P < .01). Finally, perceived quality of care was linked to QWL (β = .15; P < .01) and job satisfaction (β = .30; P < .001).
CONCLUSION
These results emphasize the importance of the role of managers and the organization in psychological health at work of health care providers and also in the quality of patient care
... Most published articles refer to workrelated stress or burnout. 5,29,30 However, to increase the quality of patient care in oncology, it is essential to look at the care providers' relationship with their professional activity and in particular their PHW. The first objective of this study was thus to explore the relationships between the PHW of pediatric oncology care workers and 1 managerial determinants and 2 organizational determinants. ...
... Moreover, we found that health care providers' perception of quality of care was linked to their QWL and job satisfaction. Although the International Society of Pediatric Oncology has long recognized the importance of the psychological health of professionals working with sick children, 30 this is the first study, to our knowledge, providing empirical evidence supporting this claim. Our results are in line with studies showing a link between burnout among oncology physicians and quality of care, through indicators such as medical errors, lack of empathy, and patients' satisfaction with their medical care. ...
Purpose
Multiple myeloma (MM) treatment has changed tremendously, with significant improvement in patient out-comes. One group with a suboptimal benefit is patients with high-risk cytogenetics, as tested by conventional karyotyping or fluorescence in situ hybridization (FISH). Methodology for these tests has been published, but not necessarily standardized.
Methods
We address variability in the testing and reporting methodology for MM cytogenetics in the United States using the ongoing African American Multiple Myeloma Study (AAMMS). We evaluated clinical and cytogenetic data from 1,221 patients (1,161 with conventional karyotyping and 976 with FISH) tested between 1998 and 2016 across 58 laboratories nationwide.
Results
Interlab and intralab variability was noted for the number of cells analyzed for karyotyping, with a significantly higher number of cells analyzed in patients in whom cytogenetics were normal (P 5.0025). For FISH testing, CD138-positive cell enrichment was used in 29.7% of patients and no enrichment in 50% of patients, whereas the remainder had unknown status. A significantly smaller number of cells was analyzed for patients in which CD138 cell enrichment was used compared with those without such enrichment (median, 50 v 200; P, .0001). A median of 7 loci probes (range, 1-16) were used for FISH testing across all laboratories, with variability in the loci probed even within a given laboratory. Chromosome 13–related abnormalities were the most frequently tested abnormality (n5956; 97.9%), and t(14;16) was the least frequently tested abnormality (n 5 119; 12.2%).
Conclusions
We report significant variability in cytogenetic testing across the United States for MM, potentially leading to variability in risk stratification, with possible clinical implications and personalized treatment approaches.
... Need for support and access to resources may change in the face of the ongoing uncertainty; thus, ongoing assessment, connecting families with resources and supports, and ensuring the healthcare team is aware and supportive of their needs are essential throughout the cancer journey. 42,43 This ongoing financial assessment is also critical for determining if cancer-related costs limit families' presence in hospital, their capacity to formulate a therapeutic alliance with the healthcare team, establish open communication, and make timely treatmentrelated decisions. 42,44 Further, lack of parental presence may contribute to an increase in nurse staffing and risk of adverse events due to the child's dependence on adults. ...
... 42,43 This ongoing financial assessment is also critical for determining if cancer-related costs limit families' presence in hospital, their capacity to formulate a therapeutic alliance with the healthcare team, establish open communication, and make timely treatmentrelated decisions. 42,44 Further, lack of parental presence may contribute to an increase in nurse staffing and risk of adverse events due to the child's dependence on adults. 45 Appreciation of how clinicians may call upon parents' affection for their children (especially mothers), in such a vulnerable state, can enforce normative expectations of intensive caregiving affecting their labor force participation. ...
Background:
Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family.
Objective:
The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts.
Methods:
As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data.
Results:
Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help.
Conclusion:
Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income.
Implications for practice:
Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.
... I n recent decades, the importance of open, honest communication in the field of pediatric palliative care has been underscored by several studies and recommendations. [1][2][3][4][5][6][7][8][9][10][11] In pediatrics, communication is often a 3-way process involving the healthcare professionals, the parents, and the child. 12 Here, we explored the topic of communicating about death between parents and their child who had incurable cancer. ...
... The published literature gives less attention to the possibility that children may not want to talk with their parents about their impending death. In fact, both studies and recommendations underscore the importance of open, honest communication, [1][2][3][4][5][6][7][8][9][10][11] and discussions are increasingly focused on how we should talk with children about death. Based on the results of our study and the work of other Figure 2. Summary of the parents' self-reflection regarding their decision to either discuss or not discuss death with their child. ...
... 45 This would also reduce the risk of noncompliance or downright rejection of treatments and prescriptions, as suggested elsewhere. 46 Indeed, maladjusted children often wish to no longer interact with their attending physicians, 47,48 and stop being passive and powerless. 42 In view of the relation between children's coping style and maternal locus of control, healthcare professionals should not just consider the adaptive valence of facing behaviors in children and their mothers but also focus on parental attributions related to the treatment phase. ...
The present study focuses on the relation between coping strategies of children with leukemia during treatment and locus of control of their mothers. In particular, the study aims to determine whether maternal locus of control can influence sick children’s coping styles, and if this relation can be used to predict maladjustments. The study analyzed a cohort of 60 pediatric leukemia patients undergoing treatment and a group formed by their mothers. The participants were recruited from two Pediatric Onco- Hematology Units in Italy. The Child Behavioral Style Scale (CBSS) was used to assess children’s coping strategies, whereas the Parental Health Locus of Control Scale (PHLCS) was employed to analyze maternal locus of control. A linear regression model was applied to verify a possible interdependent relationship between children’s coping styles and maternal locus of control. The differences in mean CBSS scores were analyzed by K-S test. Multivariate analysis of variance was performed to assess any potential effect of child’s gender, hospital context and maternal socio-cultural status on children’s coping strategies. Our results show a significant relationship between children’s coping strategies and maternal locus of control. In particular, the scales mass media, fate and healthcare professionals display a predictive effect on children’s monitoring coping style, given the positive correlation observed (F=3.28, P=0.008). In contrast, the same scales negatively correlate with blunting coping style (F=3.5, P=0.005). Our results reveal several interesting resources having a profound impact on the psychological functioning of children with leukemia undergoing treatment as well as their mothers. Furthermore, with regard to the central hypothesis of the study, our findings show both positive and negative correlations between specific scales of maternal locus of control and children’s coping style, which could be used to predict children at risk of emotional maladjustment.
... Sixty-four per cent of chief resident respondents agreed that they were only adequately trained to communicate bad news to a parent, while only 31% felt they were adequately trained to communicate bad news to a child. 48 It is also essential to look after individual staff members caring for children with cancer. 49 High patient numbers, cumulative deaths and witnessing suffering can ultimately lead to burnout. ...
Background: Comprehensive, coordinated psychosocial, supportive and spiritual care is an essential component of the holistic care of childhood cancer sufferers and their families.
Aim: The authors detail the development and value of a multidisciplinary psychosocial care team as an essential adjunct to care of childhood cancer sufferers.
Methods: A historic preamble details a period during which psychosocial and supportive care was the sole province of the paediatric oncologists and social workers and describes that the process of creating a multidisciplinary psychosocial and spiritual care team has enhanced medical care.
Results: Each member of the psychosocial group describes their care philosophy and their role in the clinical setting. We also describe the critical role of the meeting as a teaching vehicle for oncology fellows.
Conclusion: This reproducible partnership between public and private sector practitioners, designed in a resource-constrained setting, affords a diverse and highly skilled group of professionals the opportunity to meet the medical, psychological, social and spiritual needs of patients and families as they transition through the care journey.
... [3][4][5][6][7] The pediatric palliative care community has emphasized the importance of open and direct communication with children at an appropriate developmental level. [8][9][10][11][12] Clear, supportive, intentional communication with children and their parents is essential to providing quality care in pediatrics, in every setting from primary care to intensive care to chronic illness management. 13 Children and their families want to be active participants in their health care and decisionmaking. ...
Methods:
Semi-structured interviews with young adults with CF, parents of young adults with CF, and multidisciplinary CF health care providers assessed recall of and practices for communicating about prognosis. Recommendations for improvements were also solicited.
Results:
Young adults with CF recalled learning that life expectancy is limited by CF between the ages of 8 and 16 years, and that CF is a progressive disease between the ages of 7 and 19 years. They reported that the information often came from CF physicians or from online resources. Patients and parents reported earlier knowledge of prognosis than providers assumed. While learning about prognosis caused sadness and stress for some patients and families, others denied negative feelings. Interestingly, most patients reported that disclosure of prognosis had minimal impact on their adherence and treatment goals. Patients and parents reported wanting physicians to be involved in conversations about prognosis. However, providers noted several barriers to discussing prognosis, including their own reluctance, time limitations, and uncertainty about appropriate timing and content of communication.
Conclusions:
Communication about prognosis is important but also difficult for providers, patients, and families. Appropriately timed conversations, using tools to facilitate communication, could ensure patients receive timely, accurate information.
... 2. Share knowledge about the school community, explain school district's special education policies and procedures, and address family's questions and concerns (Friend & Bursuck, 2015). 3. Promote normalcy and the full integration of the child into school (Spinetta et al., 2009). 4. Have a realistic understanding of cancer, treatments, and side effects (Prevatt et al., 2000) and be closely apprised about child's medical condition (Katz & Madan-Swain, 2006). 5. Ensure that curriculum and assessment standards are addressed in the child's educational plan. ...
Due to medical advances, many students with acute chronic illnesses, like pediatric cancer, are able to attend school. The professional literature reflects the need for reform of educational strategies for children facing cancer treatment and who will be absent for extended periods of time. In order to promote successful educational services and the reintegration of students into school, it is vital for multidisciplinary teams and families to collaborate effectively. This article provides a plan to promote successful integration of students with cancer within regular classrooms.
... Tout cela implique pour les professionnels soignants une attention, une disponibilité et une offre de soin psychique qui perdure bien après la fin des traitements, car les difficultés peuvent émerger très à distance de la survenue du cancer [101]. Du fait de l'impossibilité d'identifier à coup sûr des jeunes patients à risque de troubles psychologiques ultérieurs, une vigilance continue et prolongée s'impose. ...
L’après-cancer, phase de transition, représente pour le patient un réel travail psychique. Des difficultés, tant somatiques que psychiques, peuvent émerger très à distance de la survenue du cancer. Élaborées tout au long de la préparation du 29e congrès de la SFPO (Caen, octobre 2012), les recommandations de la SFPO ont pour objectif de mieux appréhender cette période et les difficultés associées, et de soutenir une évolution de l’organisation des soins psychooncologiques dans l’après-cancer, ainsi que leur intégration à la prise en charge globale et continue du patient. Cette intégration repose entre autres sur la qualité du maillage ville/hôpital (qualité des transmissions) et l’accessibilité au long cours des soins psychiques. Elle est garante de l’adaptation des soins psychiques à la réalité somatique comme de la prise en compte des facteurs émotionnels dans les symptômes physiques. Ces recommandations, ancrées sur une analyse de la littérature et l’expertise professionnelle collective, définissent: 1) l’importance de l’évaluation de l’état psychologique des patients et du contexte familial dans l’après-cancer par les équipes oncologiques hospitalières et les acteurs de soins de ville, y compris devant tout symptôme physique sévère; 2) la nécessité d’une évaluation spécialisée par un professionnel du soin psychique devant toute symptomatologie émotionnelle durable ou itérative, tout symptôme fonctionnel persistant, toute plainte cognitive ou toute difficulté de reprise des rôles familiaux et socioprofessionnels; 3) les modalités d’anticipation des difficultés de l’aprèscancer; 4) la nécessité d’accès aux soins psychiques dans le long terme; 5) la nécessité d’intégrer systématiquement dans le programme personnalisé de soins une consultation psychologique; 6) les perspectives de recherche.
... Communication has recently become the focus of pediatric oncology [1]: Many studies have documented the existence of a relationship between awareness of the tumor and the related psychological adjustment. Diagnosis communication plays an important role in the psychological-behavioral picture of children with tumors: Such communication is a strong influencer of the child's ability to understand and cope with the disease and may thus favor adjustment or maladjustment and possible mood or relational disorders [2][3][4][5]. ...
Internalizing problems, anxiety, depression, withdrawal, and consequent social problems are frequently observed in children with brain tumors. The objective of this work is to describe the relationship between these psychological problems and the type of parent-child communication established about the disease.
A group of 64 children surviving a brain tumor (aged 4-18 years) underwent psychological assessment by means of parent reports on the Child Behavior Checklist (CBCL) and the Vineland Adaptive Behavior Scales (VABS). A semi-structured interview with each child and their parents enabled us to classify the method of communication regarding the disease as "avoidance," "ineffective," and "effective." Demographic, clinical, and functional data relating to the disease were also collected.
A significant relationship between the onset of Internalizing problems, withdrawal, anxiety-depression, and social problems and the presence of avoidance or ineffective communication about the disease was observed (P = 0.001, P = 0.001, P = 0.001, and P = 0.01, respectively). These psychological problems did not prove to be associated to demographic or clinical variables; however, they were found to be related to the children's residual functional problems. By contrast, the method of communication proved to be unrelated to clinical or functional variables, but it was associated to demographic variables such as sex and age at assessment.
Effective (complete, truthful, consistent, comprehensible, gradual and continuous, and tailored) communication to the child about his/her condition proved to be associated with a better psychological outcome.
Noncompliance with therapy is a big obstacle to successful therapy. We aimed to evaluate the prevalence and risk factors affecting the compliance of pediatric cancer patients with therapy in a tertiary care center far away from the capital in a lower-middle income country (LMIC). A retrospective cohort study of reports of all pediatric cancer patients who were diagnosed and started treatment between 2006 and 2010 at South Egypt Cancer Institute (SECI) was done. The following data were collected: Age, sex, diagnosis, compliance with therapy, and data on potential risk factors that might affect compliance, including time duration of travel from the patient's home to SECI, time lag between the first symptom until the first visit to SECI and until the start of treatment, results of reevaluation after the initial course of therapy, and therapy-related severe adverse events. Noncompliance with therapy was defined as when patients missed their determined therapy appointment for one week or more or abandoned therapy. This study included 510 patients. Eighty-three (16.3%) were non-compliant, as forty patients missed their therapy appointment (7.8%), and 43 abandoned further therapy (8.4%). Noncompliance was found to be more prevalent among patients with solid tumors. Non-compliant patients suffered a significantly higher relapse rate (47.7% vs. 11.2% in compliant patients, p < .001). Unfortunately, 75% of the abandoned patients who returned for further therapy suffered a relapse. Noncompliance with treatment is still a big problem facing cancer management in LMICs.
Throughout the entire course of care, it is of paramount importance to address the psychosocial and educational needs of patients and their families. The diagnosis and treatment of childhood cancer is extremely stressful for families. As with any life-threatening illness, childhood cancers interfere with the normal developmental milestones of childhood and adolescence, and the ability of families to function effectively. Understanding common reactions of children and families at various stages of the illness helps the practitioner communicate more effectively about the diagnosis, treatment, and prognosis and support the family throughout the process in order to prevent physical, emotional, and neurocognitive late effects. While no single professional can meet a family’s needs completely, collaborative and multidisciplinary health-care team efforts can help family members enhance adaptive coping skills and activate their support systems to effectively engage in medical care.
Background
The practice of cancer diagnosis disclosure to children has been changed with the times. The regulations of clinical trials in the 2000s might change the practice in Japan. However, the perspective of this topic among children and adults has not been investigated in detail.Methods
We studied changes in the practice of information sharing with children with cancer at pediatric cancer centers and the perspective of cancer diagnosis disclosure to children among school children, their parents and pediatric oncologists in the last 20 years by comparing the results of questionnaire surveys conducted in 1998, 2008 and 2018.ResultsThis study revealed that the performing rate has increased with the times, but the institutions actively performing for children aged 7–9 years were 36.4% even in the 2018 survey. More than 70% of children wished diagnosis disclosure if they suffer from cancer in the series of surveys, while the ratio of parents who tell cancer diagnosis to their children hovered at 34.5 to 53.7% (p < 0.001 in all surveys). The ratio of pediatric oncologists having the policy to perform diagnosis disclosure proactively increased from 9.3 to 60.0%, while that of parents having the same policy stayed at 5.3% even in 2018.Conclusions
The performing rate of information sharing with children with cancer was significantly changed in the last 20 years. The opinion gaps were observed between parents and children and between parents and pediatric oncologists.
Objectives:
Engagement of pediatric patients in conversations about their healthcare can lead to better psychological and physical outcomes. We used a communication tool called "What Matters to Me" (WMTM) to provide insight into what seriously ill children want to tell their healthcare providers about what is important to them.
Research approach:
Content analysis of completed tools.
Participants:
21 pediatric patients hospitalized on a stem cell transplant unit.
Methodological application:
Direct content analysis.
Findings:
Three themes were identified: importance of personal identity, preferences for communication, and preferences for care delivery.
Interpretations:
Children and adolescents with serious medical illnesses are willing to share what matters to them with members of their care team. WMTM provides an opportunity for pediatric units to systematically offer this opportunity to pediatric patients.
Findings for psychosocial providers:
Children and adolescents are able to identify and share what matters to them with their healthcare providers, providing an opportunity for engagement in medical care.
With increased overall 5-year survival rates in childhood cancer, psychosocial factors gained more attention in research and clinical practice. Cancer-related consequences, such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruption in social life and school/employment, loss of reproductive capacity and health-related concerns about the future, may be particularly distressing for children/adolescents with cancer and their families. Mental stress symptoms (anxiety, depression, somatoform disorders, posttraumatic stress disorder) are common complications at both during the treatment and survivorship and may have a negative impact on the course of treatment and health-related quality of life. Thus, psychosocial care is a crucial part of the multidisciplinary therapy. Psycho-oncology has developed in the mid-1970s and addresses the patient’s psychosocial problems. Some cancer survivors can derive personal benefits from the experiences made with cancer, which is termed as posttraumatic growth. Since cancer increases risk for psychological burdens, efforts should be made to identify and provide psychological support.
Objectives:
Therapeutic alliance is the collaborative bond that develops between patients/families and healthcare providers. Our objective is to determine the extent of therapeutic alliance bereaved parents perceive to have occurred with their child's physicians during their child's PICU stay, and associated factors.
Design:
Multicenter observational study.
Setting:
Eight children's hospitals affiliated with the Collaborative Pediatric Critical Care Research Network.
Patients:
Parents greater than or equal to 18 years old whose child died in a PICU (including cardiac ICU).
Interventions:
Bereaved parents completed the Human Connection Scale, a 16-item measure of therapeutic alliance, 6 months after their child's death. Human Connection Scale scores range from 16 to 64 with higher scores indicating greater alliance. Parents provided sociodemographic data, and medical records were reviewed for the child's clinical characteristics.
Measurements and main results:
Two-hundred and thirty-three parents of 157 deceased children responded to the Human Connection Scale with greater than or equal to 80% item completion. Among parents, 146 (62.7%) were female, 155 (66.5%) were White and 46 (19.7%) were Black, 175 (75.1%) were married, and 209 (89.7%) had at least a high-school education. Among children, median age at the time of death was 5.9 years (interquartile range, 0.64-13.9 yr) and 114 (72.6%) died after limitation or withdrawal of life support. Mean Human Connection Scale score was 51.4 ± 11.1 for all parents, 52.6 ± 9.0 for White parents, and 47.0 ± 13.7 for Black parents. In multivariable modeling predicting Human Connection Scale scores, race was the only parent or child characteristic in the final model. Human Connection Scale scores were significantly different (-4.56; 95% CI, -8.53 to -0.6; p = 0.025) between the Black and White parents with items about trust, care, and honest communication showing the greatest mean difference.
Conclusions:
Among parents bereaved in the PICU, therapeutic alliance with physicians is moderately high. Future research should identify strategies to strengthen therapeutic alliance with Black parents and examine the role of alliance on bereaved parents' health outcomes.
Preface: When it comes to transitions, we usually think of important progressions, momentous historical events, peoples’ unforgettable memories, or significant changes in the individual’s life. More rarely, we refer to the feature of simplicity. The Second International Congress of the Italian Society of Pediatric Psychology, in order to focus on and open a debate about the evolutionary transitions in pediatric conditions, emphasised simplicity as essentiality, repeatability, reproducibility and comprehensibility of these progressions [...].
Introduction
Pediatric oncology integrative medicine is a growing field which needs further dedicated studies to expand the general awareness about the role of integrative therapies in mitigating the pediatric oncology experience. The present study intends to discover the potential of an innovative approach as Freestyle Motocross Therapy (FMX Therapy) to support hospitalized pediatric cancer patients, their parents and doctor-nurse professionals. The specific aim was to explore if the quality of their experience improves after FMX Therapy.
Method
This was a pre-post interventional study involving 504 pediatric patients with oncological disease (average age 9.2; 43% male; 73% Leukemia diagnosis), 50 parents (average age 33.2; 83% female) and 25 doctor-nurse professionals (95% female).
The self-report questionnaire was completed by children/adolescents, parents and professionals before (Time 0) and after (Time 1) FMX Therapy, to assess several health outcome measures (e.g., pain, stress).
Results
After therapy, results showed a reduction in the average perception of pain in children/adolescents (Time 0 = 3.34 vs Time 1 = 1.66, p < .0001) and in the average perception of stress in parents (Time 0 = 6.92 vs Time 1 = 4.06, p < .0001). For both patients and parents, there was an increase in positive emotions and a reduction in negative emotions after FMX Therapy. Doctor-nurse professionals also highlighted the positive effects of FMX Therapy.
Conclusion
FMX Therapy improves the pediatric oncology experience, and it appears to have all the features to be considered a nascent field with great potential as integrative medicine for patients, parents and professionals.
Effective end-of-life (EOL) communication between pediatric oncology providers and child and family members is essential to minimizing unnecessary additional distress and to maximizing quality of life as care goals shift from curative-focused to comfort and end-of-life (EOL) care. EOL communication is information-sharing among children, family members, and health care providers regarding the child’s illness, prognosis, and goals of care as the child transitions to the end of his/her life. Information-sharing comprises components of communication and types of communication within the context of the child’s and family’s lifestyle and culture. Communication experiences that occur at the diagnosis of cancer and early in the ill child’s illness trajectory can leave a lasting imprint and shape future communication experiences. Research indicates that offering the ill child, when appropriate, and family members the opportunity to engage in information-sharing that is direct, open, honest, and caring, optimal short- and long-term outcomes related to goal-concordant and high-quality care and bereavement are achieved. Health care providers are key participants and often the drivers of information-sharing with children and family members about the child’s condition. However, research demonstrates that pediatric oncology providers can struggle with barriers to promoting effective EOL communication. This chapter summarizes the scientific foundation related to EOL communication in pediatric oncology and includes recommendations for clinical practice to achieve optimal communication outcomes during EOL.
Introduction
Including children in medical conversations is considered the standard of care for children with cancer. However, previous qualitative research has raised concerns about how the child’s presence impacts the parent’s communication experience. The current study examines the frequency and impact of child presence during a serious medical conversation on the parent’s communication experience in pediatric oncology.
Methods
Three hundred sixty parents of children newly diagnosed with cancer completed questionnaires assessing the child’s presence during the initial conversation with the oncologist about diagnosis and treatment and parental communication experiences. Primary oncologists completed a survey question about the child’s prognosis.
Results
Sixty-one percent of children were present during the initial conversation, with lowest rates among children aged 3–6 (44%) and 7–12 (44%). Child presence was not associated with parents’ reports that they received prognostic information (p = 0.20), high-quality information (p = 0.19), or high-quality communication about the child’s cancer (p = 1.0).
Discussion
The parent’s communication experience is not diminished by the choice to include the child. Given the bioethical imperative to include children in conversations about serious illness whenever possible, this concern should not be used to exclude children, but rather to give parents additional time of their own when needed to fully process decisions.
Skillful communication is imperative to the practice of pediatric oncology and pediatric palliative care. Clear, empathic, and individualized communication facilitates trust and relationship building between clinicians, patients, and families, encourages shared decision-making, and affords clinicians a valuable opportunity to integrate goals of care and quality of life into the holistic management plan. In the context of incurable illness, conversation also may serve as a therapeutic intervention itself, enabling clinicians to reframe hope, alleviate suffering, and mitigate complicated bereavement. Moreover, good communication promotes collaborative interdisciplinary care coordination and continuity, enabling the provision of services, resources, and support across various care locations and throughout the illness trajectory. The importance of providing excellent communication to the families of children with high-risk cancer and other life-threatening illnesses has been emphasized by the American Academy of Pediatrics, the Institute of Medicine, multiple national oncology societies, and experts in pediatric oncology and palliative care. This chapter discusses the benefits of providing effective communication at the intersection of pediatric oncology and palliative care and reviews strategies for achieving high-quality communication between clinicians, patients, and families across a spectrum of challenging clinical scenarios. This chapter also highlights common barriers to effective communication and offers strategies to overcome potential roadblocks, incorporating recommendations from a diverse interdisciplinary team of pediatric palliative care experts.
Purpose of review:
Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms.
Recent findings:
Research in this emerging field has expanded dramatically over the past several years. This review will focus on advancements within several key areas of the field, specifically regarding investigation of the communication needs and preferences of patients and families, exploration of educational initiatives and interventions to teach PPO principles to clinicians, study of patient-reported and parent-reported tools to better assess and manage refractory symptoms, and development of novel models to integrate palliative care within pediatric oncology.
Summary:
Research findings in the field of PPO, concurrent with advances in the treatment of pediatric cancer, may help improve survival and quality of life for children with cancer.
Purpose
The integration of psychosocial care in the routine care of cancer patients has been set as an international standard, but there are healthcare contexts where these services are lacking as psychosocial care providers are not incorporated in multidisciplinary teams and screening for psychological distress is not carried out routinely or systematically.
Method
In this article, we discuss the findings from an ethnographic study that focused on exploring the working experiences of psychosocial care providers from one children's hospital in Buenos Aires, Argentina. The study is based on 10 in-depth interviews with hospital staff members and participant observation in selected hospital areas. The transcripts from the interviews and fieldnotes from the observations were analyzed using thematic analysis.
Results
We found that psychosocial care providers encounter difficulties while attempting to deliver services to children and their families, produced mainly by their lack of collaboration with other professional groups, insufficient human resources, and a growing patient population. As a result of this situation, psychosocial care providers often prioritize some patients over others, leaving a considerable number of patients and family members without psychosocial support.
Conclusions
The study highlighted the barriers psychosocial care providers encounter while attempting to deliver services to children and their families. Further work needs to be carried out to fully integrate psychosocial care in national health policies and ensure this type of support is available for all patients and their families.
Throughout the entire course of care, it is of paramount importance to address the psychosocial and educational needs of patients and their families. The diagnosis and treatment of childhood cancer is extremely stressful and frightening for families. As with any life-threatening illness, childhood cancers interfere with the normal developmental milestones of childhood and adolescence and the ability of families to function effectively. Understanding common reactions of children and families at various stages of the illness helps the practitioner communicate more effectively about the diagnosis, treatment, and prognosis and to support the family throughout the process. While no single professional can meet a family’s needs completely, collaborative and multidisciplinary health care team efforts can help family members enhance adaptive coping skills and mobilize their support systems to effectively engage in medical care.
Communication is the most common “procedure” in pediatric oncology and, when done well, can have a lasting positive impact on pediatric patients and their families. This chapter reviews the general purposes and strategies for communication in pediatric oncology with a specific focus on the unique role psychosocial clinicians play in facilitating effective communication between patients, caregivers, and providers. Unique issues and topics in pediatric oncology are discussed including multidisciplinary collaboration, triadic communication and decision-making, developmental considerations, discussing bad news, and communication with caregivers in distress.
With increased survival rates after cancer, attention shifts from mortality to long-term morbidity due to disease- and treatment-related late effects. This review summarizes empirical results of cardiac, pulmonary, neurological, neuropsychological, gonadal, and psychosocial late effects and describes the risk of secondary malignant diseases and of cancer related fatigue. Life-long follow-up assessments are recommended to identify survivors needing specific interventions to maintain optimal quality of life. A history of cancer has to be taken into account among patients within primary care and mental health system.
Psychotherapy in children with cancer begins with a review of the factors that make this a unique group and how they impact the therapy, therapist and therapeutic relationship. The process begins with a thorough evaluation, including an assessment of the characteristics of the patient, the psychopathology and the nature and history of the medical illness. Additionally, developmental stages and abilities must be evaluated and taken into consideration throughout the process. The evaluation drives the process of designing a therapeutic intervention. Interventions may include all modalities and durations of time and often change as the needs and issues in this population evolves through the course of treatment and even in to the post treatment period. Given the variability of diagnosis and developmental issues within the paediatric cohort consideration should be given to a multi-disciplinary approach to intervention when possible. Finally it is important to recognise the impact of working with this population on the therapist. It not only puts the therapist at risk for burnout and vicarious traumatisation but it may also contribute to counter-transference in the therapy.
The study focused on correlations between mothers' coping strategies of children suffering from tumor, during the treatment phase, and the perception of their own family functioning in terms of cohesion and adaptability. The research verified that a virtuous connection between the variables represents an important resource for the mothers. The study was performed within a group of 34 mothers of children suffering from tumor, during the treatment phase. The instruments were the Coping Orientation to Problems Experienced-New Italian Version (COPE-NVI), to investigate coping strategies, and the Family Adaptability and Cohesion Evaluation Scale (FACES III), to analyze perception of family functioning. There were statistically positive correlations between family cohesion and orientation toward problem (r =.49, p 0.05) and family adaptability and orientation toward problem (r = 0.36, p 0.01); and statistically negative correlations between adaptability and transcendent orientation (r =-0.40, p 0.01).
This chapter highlights potential challenges at each stage of the illness, reviews common psychosocial reactions and provides suggestions for building on child and family strengths, fostering adjustment and achieving the best possible quality of life for the child and family facing childhood cancer. The oncologist should provide hope and optimism unless the medical condition dictates otherwise. Healthcare professionals have come to recognize the psychosocial complexity of delivering care to the child and family facing cancer. The diagnosis and treatment of childhood cancer is extremely stressful and frightening for families. As with any life-threatening illness, childhood cancers interfere with the normal developmental milestones of childhood and adolescence and the ability of families to function effectively. Understanding common reactions of children and families at various stages of the illness helps the practitioner to communicate more effectively about the diagnosis, treatment and prognosis and to support the family throughout the process. While no single professional can meet a family's needs completely, collaborative and multidisciplinary healthcare team efforts can help family members enhance adaptive coping skills and mobilize their support systems to effectively engage in medical care.
The loss of a child is associated with an increased risk for developing psychological problems. However, studies investigating the impact of parents' faith and hope for a cure during the palliative phase on long-term parental psychological functioning are limited.
OBJECTIVE: The study's objective was to explore the role of faith and hope as a source of coping and indicator of long-term parental adjustment.
METHODS: Eighty-nine parents of 57 children who died of cancer completed questionnaires retrospectively, exploring faith, hope, and sources of coping, and measuring parents' current level of grief and depression.
RESULTS: For 19 parents (21%) faith was very important during the palliative phase. The majority of parents remained hopeful for a meaningful time with their child (n=68, 76%); a pain-free death (n=58, 65%); and a cure (n=30, 34%). Their child (n=70, 79%) was parents' main source of coping. Twelve parents (14%) suffered from traumatic grief, and 22 parents (25%) showed symptoms of depression. Parents' faith was not associated with less long-term traumatic grief (OR=0.86, p=0.51) or symptoms of depression (OR=0.95, p=0.74), and parents' hope for a cure was not related to more long-term traumatic grief (OR=1.07, p=0.71) or symptoms of depression (OR=1.12, p=0.47).
CONCLUSIONS: Faith was important for a minority of parents and was not associated with less long-term traumatic grief or symptoms of depression. The majority of parents remained hopeful. Hope for a cure was not associated with more long-term traumatic grief or symptoms of depression.
If you stop and think for a while, it’s easy to understand how the word “death” is usually far from the word “child”.
How can the pediatric palliative care operators focus their attention on the quality of life? On which values is
palliative medicine based? The issues that have arisen from the interviews in this qualitative research are different
but complementary; according to doctors, a lesser degree of technicity is needed on behalf of increased human
contact that allows a greater awareness of what is being done (curing or over-treating). According to nurses,
a continuous skills improvement, that always considers the relationship not as a way but as an integral part of
the treatment, still setting clear “boundaries” in the relationship with parents, is essential; on the contrary, psychologists
primarily linger over the household on a “continuum” that begins from the admission stage, then continues
through a large networking. In our mind, we recognized the need to find a common language among
all the pediatric palliative care services, almost as if sharing knowledge and “best practices” was missing.
Background: In pediatrics, the “best interest” standard has become the prevailing standard in decision making even though it proves difficult to apply in practice. Differences in values can lead to different views by families and physicians of what is in the interest of a child. Our aim was to gain insight into the views of parents, children, and physicians in a pediatric oncology setting. Methods: We conducted a qualitative multicenter study, using in-depth semistructured interviews, with 21 children aged 8–18 years undergoing cancer treatment, 26 parents, and 15 pediatric oncologists. Results: At the onset of treatment, parents, children, and physicians had the same views on what is in the interest of the child: survival by following the treatment protocol. In the course of treatment, however, a transition takes place. For families, what constitutes the best interests expands beyond medical considerations, to include the wish to lead a normal life, having control over certain aspects of treatment, and maintaining one's identity (e.g., through religion). These aspects sometimes collide with medical aspects, leading to different professional and familial views about what course of action is appropriate. Conclusions: In order to recognize personal views and avoid conflicts, physicians should explicitly discuss parent and family concerns and opinions in the course of treatment. We present a model of “communicative ethics” to make these issues a subject of discussion. The role of the family in determining what is in the best interest of the child should only be limited when it implies a substantial medical risk of (irreversible) harm to the child.
To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents' information needs regarding their grandchild's cancer.
Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs.
Eighty-seven grandparents participated (mean age 65.02 years, range 46-81, 31% male). Grandparents' information needs were high, especially among young and paternal grandparents. Grandparents' greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported "high need"), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents' booklet, distributed at diagnosis and available online.
Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on 'second-hand' information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources.
Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.
Patterns of cancer incidence across the world have undergone substantial changes as a result of industrialisation and economic development. However, the economies of most countries remain at an early or intermediate stage of development-these stages are characterised by poverty, too few health-care providers, weak health systems, and poor access to education, modern technology, and health care because of scattered rural populations. Low-income and middle-income countries also have younger populations and therefore a larger proportion of children with cancer than high-income countries. Most of these children die from the disease. Chronic infections, which remain the most common causes of disease-related death in all except high-income countries, can also be major risk factors for childhood cancer in poorer regions. We discuss childhood cancer in relation to global development and propose strategies that could result in improved survival. Education of the public, more and better-trained health professionals, strengthened cancer services, locally relevant research, regional hospital networks, international collaboration, and health insurance are all essential components of an enhanced model of care.
The study focuses on parents’ psychological implications caused by the treatment of their children suffering from tumor. It investigates some specific mothers’ resource factors such as their strategies of coping and the perception of their own family functioning in terms of cohesion and adaptability.
The study was performed with 34 mothers of children suffering from acute lymphoblastic leukemia (ALL), during the treatment phase. The used tools were the Coping Orientation to Problem Experienced—New Italian Version, to investigate coping strategies, and the Family Adaptability and Cohesion Evaluation Scale-III, to analyze both real and ideal perception of family functioning.
The data related to coping, show how the involved mothers tend to mainly use the strategies of positive aptitude, orientation toward problem and social support (F = 99.88, df = 4, P < .01). The family functioning, in terms of adaptability, is described as chaotic relating to both the real (χ² = 13.29, df = 3, P = .004) and ideal (χ² = 11.52, df = 2, P = .003) family, whereas in terms of cohesion, it is perceived as chiefly disengaged in the real family (χ² = 12.3, df = 3, P = .006) and as enmeshed in the ideal one (χ² = 12.58, df = 3, P = .006).
Statistically positive correlations were only detected between adaptability and avoidance (r = 0.49, P < .01); adaptability and orientation toward problem (r = 0.36, P < .05); and adaptability and transcendent orientation (r = −0.04, P < .05).
Despite the critical situation, the mothers have shown optimistic view, care for problem management and capability to ask for help. These coping strategies allow the therapeutic alliance between families and health care workers, so useful for the quality of childcare.
Background
Sleep has a significant impact on the daily functioning of children and their parents. The purpose of this study was to describe and gain an understanding of the sleep characteristics of children receiving treatment for cancer and their caregivers using a mixed methods concurrent triangulation design.ProcedureData were collected from questionnaires completed by 35 caregivers of children receiving treatment for cancer and compared to similar data from 64 caregivers of healthy children.ResultsThere was considerable variability in the sleep characteristics of the children receiving treatment for cancer as reported by their caregivers. However, as a group, the magnitude of their sleep problems, particularly among the adolescents, was significantly greater than that of the comparison group and had the potential to impact negatively on their participation in everyday life. They had poorer sleep efficiency. Many impairments, particularly pain, nightmares, and symptoms associated with steroid administration, impacted their sleep. Their caregivers also experienced an increased prevalence of sleep issues, which impacted their daytime functioning. Suggestions to prevent and treat the sleep issues of children receiving treatment for cancer focused on practicing good sleep habits, ensuring a safe, secure, and comfortable sleep environment, and using non-pharmaceutical and pharmaceutical interventions to address impairments interfering with sleep. Caregivers noted that it was important to take care of themselves by getting sufficient sleep and accepting help from others.Conclusions
Sleep issues are prevalent in families of children receiving treatment for cancer and should be assessed routinely and addressed. Pediatr Blood Cancer 2011;56:638–645. © 2010 Wiley-Liss, Inc.
Childhood cancer treatment completion is a significant milestone. However, coming off treatment may be a time of psychological vulnerability for parents. This review assesses published research (1979–2009) on the psychosocial impact of treatment completion on parents. Fifteen articles met all inclusion criteria and demonstrated that while they celebrate treatment completion, parents (particularly mothers) can experience significant distress, including fear of recurrence, fatigue, and loneliness. Distress appears to ease with time, possibly as the perceived risk of relapse declines. Continued psychosocial support specifically targeting parents' risk perceptions, physical and emotional fatigue, social isolation, and parenting concerns post-treatment is warranted. Pediatr Blood Cancer 2011;56:524–531. © 2010 Wiley-Liss, Inc.
Because of the life-altering and potentially lingering psychosocial effects of leukemia on children and families, pediatric
health professionals have developed a variety of interventions to mitigate family distress. Psychosocial health services are
psychological and social services and interventions that enable patients, their families, and health care providers to optimize
biomedical health care and to manage the psychological/behavioral and social aspects of illness and its consequences so as
to promote better health (IOM 2008). Interventions are shaped by, informed by, and/or delivered by psychologists, psychiatrists,
social workers, nurses, and chaplains, as well as by oncology subspecialists, ethicists, patients and their families, and
advocacy organizations (Holland 2003). These interventions vary in their target population (patients, siblings, and/or parents
and other family caregivers), settings, and characteristics. For example, a recent review of psychosocial health services
for cancer patients and their families by the United States Institute of Medicine (IOM) found some interventions that were
derived from a theoretical framework, some that were based on research evidence, and some that had undergone empirical testing;
few evidenced all three characteristics (IOM 2008). Nevertheless, the IOM identified five common elements of models for the
effective delivery of psychosocial health services: (1) identifying psychosocial health needs, (2) connecting patients and
families to needed services, (3) supporting them in managing the illness, (4) coordinating psychosocial care with biomedical
care, and (5) following up on care delivery to evaluate the effectiveness of these services (Fineberg 2008).
In all the major medical centers throughout the Middle East, there is a functioning pediatric hematology oncology department. In almost all countries, opioids such as morphine, oxycodone, and fentanyl are available. Pediatric palliative care services are still in their infancy and await further recognition and development. Unfortunately, there are still countries in the Middle East where children with cancer are diagnosed when the disease is already at stage III or IV, when the only option left is palliation. To decrease the incidence of late presentation, more effort is needed concerning public awareness, and concomitantly, an urgent need to develop hospital-based and community-based palliative and supportive care services. The initial step in this direction would involve more training of health care providers: Pediatricians, Pediatric Oncologists, Oncology Nurses, and Social Workers with updated pharmacological and nonpharmacological modalities of treatment.
This study examines what proportion of families of recently diagnosed pediatric cancer patients are offered recommended psychosocial services, and if that proportion is linked to size of institution or number of psychosocial staff.
A web-based survey was offered to all institutions belonging to the Children's Oncology Group (COG).
Respondents from 127/212 (=59.9%) COG institutions provided information about percentage of families offered specific services within the first 30 days after diagnosis, and barriers to providing such services, as well as information about other factors that might affect their ability to provide psychosocial care. All sites reported that ≥50% of families are offered 21 of the 27 services investigated in this study. Over half of respondents (n=290) indicated that inadequate funding for staff (72%) and families' time constraints (63%) were barriers to providing psychosocial care. There was a positive relationship between the total number of psychosocial staff and the number of new patients seen annually (Pearson correlation=0.3409, P-value < 0.0004), but not between the total number of psychosocial staff and specific services offered. Most sites do not use validated assessment tools or evidence-based psychosocial interventions.
While some version of most recommended psychosocial services are offered across COG institutions, evidence-based psychosocial services are offered at only 11% of sites. Advances in psychosocial outcomes in pediatric oncology could be accelerated by multi-site collaboration, use of standardized assessment tools, and evidence-based interventions.
We aimed to examine parents' views regarding their preadolescent child's presence during discussions about serious illnesses.
In-depth qualitative interviews with parents of children receiving treatment for acute lymphoblastic leukemia were conducted. Parents were sampled from 6 UK treatment centers. Analysis was informed by the constant comparative method and content analysis.
We report on interviews with 53 parents (33 mothers, 20 fathers). Parents acknowledged the benefits of communicating openly with children, but few thought that their child's presence in discussions was straightforwardly desirable. They described how their child's presence restricted their own communication with physicians, made concentrating difficult, and interfered with their efforts to care for their child emotionally. Children's presence was particularly difficult when significant issues were being discussed, including prognoses, adverse results, and certain medical procedures. Parents felt that such discussions posed a potential threat to their child, particularly when they had not first had an opportunity to discuss information with the physician separately from the child. In contrast, separate meetings enabled parents to absorb information and to convey it to their child at an appropriate time and in a reassuring way. Some parents experienced difficulties in accessing separate meetings with physicians.
The difficulties parents described could potentially be addressed by extending, beyond the diagnosis period, the practice of sequencing significant information so that it is communicated to parents in separate meetings before being communicated to the child and by periodically exploring with parents what information would be in each child's interests.
This is the 11th official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. There is a tendency for some physicians to make blanket statements against the use of non-proven, nonconventional therapies, even when these therapies are not harmful. There is an equal and opposite tendency on the part of many parents to do all that they possibly can for their children, including using any non-conventional therapy they feel might do some good. The health care team must open a healthy dialogue with parents that will lead to a clear distinction between those complementary therapies that are harmful and those that are not, indeed, might even be helpful psychologically if not therapeutically.
The number of subjects that have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood is increasing over time.
Members of the International Berlin-Frankfurt-Munster (I-BFM) Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts (representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors) from 13 European countries (with five additional experts from North America) to Erice, Sicily (from October 27 to 29, 2006) to discuss the circumstances in which the word ‘cure’ should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the personal and professional experience of the participants an overview statement of the group’s philosophy of cure and care of survivors of childhood cancer. The ten points reflect what the group considers essential in the survivors’ cure and care.
This is the eighth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. It deals with a topic discussed and approved by the SIOP Committee; namely, “Recognition, prevention, and remediation of burnout in health care professionals participating in the care of children with cancer.” It is addressed to the Pediatric Oncology community and outlines: 1) the general definition of burnout as mental and physical exhaustion, indifference, sense of failure as a professional, and sense of failure as a person; 2) the causes of burnout from the nature of the work itself, the work environment, and the characteristics of the individual; 3) the prevention of burnout, changing the detrimental aspects of one's work environment and modifying one's own behavior; and accepting methods to remediate burnout when it occurs. Med. Pediatr. Oncol. 35:122–125, 2000. © 2000 Wiley-Liss, Inc.
This is the second official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology constituted in 1991. It develops one of the topics enclosed in the first document approved by the SIOP Board. The topic, “School/Education,” is addressed to the Pediatric Oncology Community as guidelines to follow for considering this issue in a more appropriate way. © 1995 Wiley-Liss, Inc.
This is the tenth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, instituted in 1991. It is addressed to the pediatric oncology community. Children clearly have a right to participate in medical decisions regarding their own treatment, based on the developmental level of the child. The objective of these guidelines is to encourage physicians to share with the child developmentally relevant medical information specific to that particular child's health status, in the context of the child's own culture, so that he or she can actively participate in the decision-making process regarding his or her own health. These guidelines, geared toward this objective, discuss the child's right to medical information, the parents' legal responsibility for but not exclusive right over the child's health, and ways of encouraging the younger child's active participation in his or her own health care at an age-appropriate level of understanding. For adolescents, there should be a full and legally mandated power to make their own decisions regarding medical treatment. Med Pediatr Oncol 2003;40:244–246. © 2003 Wiley-Liss, Inc.
Recognizing the importance of psychosocial issues in the care and cure of the child with cancer, the board of the International Society of Pediatric Oncology (SIOP) in 1991 constituted a Working Committee on Psychosocial Issues in Pediatric Oncology, with Giuseppe Masera as chair and John Spinetta as co-chair. This committee met for the first time in Rhodes, Greece, in October 1991. The committee discussed various psychosocial issues and developed a document on Aims and Recommendations, summarizing the experiences of major centers. This document was approved by the SIOP board, which recommended diffusion of the document to the pediatric oncology community.
This is the third official document of the SIOP Working Committee on Psychosocial issues in pediatric oncology constituted in 1991. This document develops another topic already discussed and approved by the SIOP committee. The topic: "Care of long-term survivors" is addressed to the pediatric oncology community as guidelines that could be followed for considering this issue in a more appropriate way.
This is the fourth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology constituted in 1991. This document develops another topic discussed and approved by the SIOP Committee: "communication of the diagnosis" is addressed to the pediatric oncology community as guidelines that could be followed. The highly stressful nature of the diagnostic period must be acknowledged, and communication involving the staff and all family members should cover both medical and psychosocial issues. A well-planned and extensive initial session should be followed by continuing discussions. The goal is a knowledgeable family that can talk openly with its members and with the staff.
This, the fifth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important topic: the Therapeutic Alliance between families and staff. This is addressed to the Pediatric Oncology Community as Guidelines that could be followed. Every parent, medical staff member, and psychosocial professional involved in the care of the child should be responsible for cooperating in the child's best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.
This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the pediatric oncology community as a useful set of guidelines. It should be always possible for a declining child to die without unnecessary physical pain, fear, or anxiety. It is essential that he or she receive adequate medical, spiritual, and psychological support, and that the child at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life for the days that remain.
This is the seventh official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. This document develops an additional topic discussed and approved by the SIOP Committee, "Assistance to siblings of children with cancer. " It is addressed to the pediatric oncology community and outlines general principles for helping siblings throughout phases of treatment: at diagnosis, during treatment, in the event of relapse, during bone marrow transplantation, after completion of therapy, during palliative care and the terminal phase.
This is the eighth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. It deals with a topic discussed and approved by the SIOP Committee; namely, "Recognition, prevention, and remediation of burnout in health care professionals participating in the care of children with cancer." It is addressed to the Pediatric Oncology community and outlines: 1) the general definition of burnout as mental and physical exhaustion, indifference, sense of failure as a professional, and sense of failure as a person; 2) the causes of burnout from the nature of the work itself, the work environment, and the characteristics of the individual; 3) the prevention of burnout, changing the detrimental aspects of one's work environment and modifying one's own behavior; and accepting methods to remediate burnout when it occurs.
This is the 11th official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. There is a tendency for some physicians to make blanket statements against the use of non-proven, non-conventional therapies, even when these therapies are not harmful. There is an equal and opposite tendency on the part of many parents to do all that they possibly can for their children, including using any non-conventional therapy they feel might do some good. The health care team must open a healthy dialogue with parents that will lead to a clear distinction between those complementary therapies that are harmful and those that are not, indeed, might even be helpful psychologically if not therapeutically.
Critical commentary: SIOP working committee on psychosocial issues in pediatric oncology
- G Masera
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Critical commentary: SIOP working committee on psychosocial issues in pediatric oncology
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