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SIOP Working Committee on psychosocial issues in pediatric oncology: Guidelines for communication of the diagnosis
Abstract
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.
... The International Society of Pediatric Oncology (SIOP) guidelines underscore the importance, when communicating with AYA cancer patients, of giving them information proportional to their age and maturity. 8,14 In many countries, the lower limit for legal capacity is set at 18 years of age, beyond which patients must personally consent to any treatment they receive. Although an adolescent under 18 years is not legally entitled to accept or refuse a treatment, it is nonetheless crucial to ensure their understanding and obtain their assent. ...
... Over the years, the SIOP committee has worked on various issues and published numerous documents to promote psychosocial support intervention in pediatric oncology, and to integrate it in the model of care. 8,9,14,[18][19][20][21][22][23][24][25] Core aspects in the pediatric oncology setting concern: the need for a multidisciplinary team comprising different professionals coordinated by the pediatric oncologist; the establishment of a therapeutic alliance between the medical staff and the patient's family, which implies actively involving the latter in the patient's care; and focusing attention on the patient's needs. Communication with patients must be adequate and appropriate for their age and developmental level. ...
... It should be the first of many steps in what is called a "communicative process and relationship" between the multidisciplinary health care team, patients, and their families. 8,14 A diagnosis must be communicated in a manner that responds to patients' and their families' needs, and their different levels of prior knowledge and awareness, in order to gain the confidence of the parties involved. The guidelines were written with special reference to pediatric patients, but are also applicable to AYA cases. ...
Maria Chiara Magni,1 Laura Veneroni,1 Carlo Alfredo Clerici,2 Tullio Proserpio,3 Giovanna Sironi,1 Michela Casanova,1 Stefano Chiaravalli,1 Maura Massimino,1 Andrea Ferrari1 1Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy; 2Department of Pathophysiology and Transplantation, University of Milan, Milan, Italy; 3Pastoral Care Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy Abstract: Adolescence is a particularly complex time of life, entailing physiological, psychological, and social changes that further the individual's cognitive, emotional, and social growth. Being diagnosed with cancer at this time can have important consequences on an individual's emotional and physical development, and adolescent and young adult cancer patients have particular medical and psychosocial needs. Patient–physician communications are important in any clinical relationship, but fundamental in the oncological sphere because their quality can affect the patient–physician relationship, the therapeutic alliance, and patient compliance. A major challenge when dealing with adolescent and young adult patients lies in striking the right balance between their need and right to understand their disease, treatment, and prognosis, and the need for them to remain hopeful and to protect their emotional sensitivity. We herein describe the activities of the Youth Project of the Istituto Nazionale Tumori in Milan, Italy in order to share a possible model of interaction with these special patients and the tactics our group has identified to help them communicate and share their thoughts. This model implies not only the involvement of a multidisciplinary team, including psychologists and spirituality experts, but also the constitution of dedicated creative activities to give patients the opportunity to express feelings they would otherwise never feel at ease putting into words. These efforts seek the goal to minimize the potentially traumatic impact of disease on the patient's psychological well-being. Our group focused also on communication using modern media as vehicles of information, eg, integrating the use of social networks in the involvement of patients in adolescent- and young adult-dedicated activities and uploading informative videos on YouTube. Keywords: relationship, teenagers, psychology, spirituality, art, social network
... members. [5][6][7] Guidelines and recommendations regarding psychosocial care and communication in pediatric oncology have been available for many years, [8][9][10] but there are few scientifically evaluated psychosocial interventions. A systematic review 11 found that only 2 of 173 interventions in pediatric oncology included siblings. ...
... All but one sibling aged ≥13 years reported that FTI came at the right time. The majority of siblings reported that the length Too many 1 (7) 1 (9) Missing 1 (7) 1 (9) If the support program came at the right time ...
Background
Childhood cancer affects the whole family. Illness-related stressors increase the risk for poor family communication, affecting the family's well-being. Siblings describe worry and poor illness-related information. As there are few evaluated family interventions in pediatric oncology, this study aimed to pilot-test a family-centered intervention, the family talk intervention (FTI), in pediatric oncology. This paper examined the feasibility in terms of acceptability from the siblings’ perspectives.
Methods
This study derives from a pilot study of 26 families including 37 siblings recruited from one pediatric oncology center. Standard FTI comprises six meetings with the family, led by two interventionists, with the main goal to facilitate family communication on illness-related topics (e.g., prognosis, the invisibility of healthy siblings). This paper focuses on interview and survey data from siblings after participation in FTI. The study is registered at ClinicalTrials.gov (Identifier NCT03650530).
Results
The siblings, aged 6 to 24 years, stated that the interventionists made the meetings feel like a safe environment and that it was a relief for the siblings to talk. They reported that FTI helped the family talk openly about illness-related topics, which they felt led to increased family understanding and improved relationships. The siblings described that FTI also helped them with their school situation. The majority of the siblings reported that FTI came at the right time and involved an appropriate number of meetings.
Conclusion
According to the siblings, the timing, content, and structure of FTI were appropriate. FTI showed benefits for both the siblings and each family as a whole.
... Early landmark cancer research with children and adolescents 1 redirected clinicians from protecting children from knowledge about their cancer to advocating for children's rights to be involved in their treatment decision making (TDM). [2][3][4][5] Current knowledge about TDM in children with cancer comes largely from retrospective, descriptive evidence that implies treatment decision involvement differs by child's age, [6][7][8][9] disease experience (e.g., time since diagnosis, experiencing Abbreviation: ALL, acute lymphocytic leukemia; 'Having a Say', "Having a say, as I need at this time"; STDM, shared treatment decision making; TDM, treatment decision making relapse), 10 type of decision, 9,10 and parents' desire to shield the child from distressing information. [11][12][13][14][15] Further, children's preference of being involved in TDM did not always correspond to their parents' preferences of involving them. ...
... Across the world, government and professional societies' recommendations about child and adolescent TDM are built on the rights of children to have information and involvement in their treatment decisions. [2][3][4][5]30,31 Our findings suggest that child and adolescent views of their TDM are more nuanced than this; children should also have a right to choose not to know or not to be engaged at a given time. ...
Background:
Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so.
Procedure:
Using descriptive qualitative research methods, we interviewed 20 children ages 9-17 years about their TDM preferences and experiences. We shifted our conceptualizations as findings emerged about how children with cancer viewed their decisional experiences. Results from constant comparative analysis of participant interviews yielded a new construct, "Having a say, as I need at this time" ('Having a Say'), which focuses more broadly on child communication preferences and the dynamism of those preferences. Ten additional interviews confirmed 'Having a Say' results.
Results:
Children's contextually related 'Having a Say' preferences ranged from not wanting to hear information at this time, to being included in treatment discussions, to choosing a treatment option. Children reported both positive and negative effects of being involved (or not) in treatment discussions as they preferred. Children's preferences assumed the presence and involvement of their parents and doctors. Illness conditions (e.g., stage of treatment; symptom distress) informed child communication preferences more so than the child's age.
Conclusions:
The 'Having a Say' construct challenges the dominant shared TDM paradigm, which presumes it is best to involve children in their treatment decisions. 'Having a Say' is both a developmental and conceptual fit for children that can inform future research to develop and test clinical care approaches to meet child and adolescent communication needs.
... Both children undergoing treatment for brain tumors and survivors require information regarding their diagnosis, treatment, follow-up care, and late effects [2] [3]. Continuous and honest communication is important to help these children build trusting relationships with medical professionals and participate in treatment and health management [4] [5]. The first step in facilitating this open communication is ensuring that medical professionals and parents provide children with accurate and appropriate information regarding their diagnosis [6]. ...
... Our findings describe the current degree of information provision to children with brain tumors in Japan. In principle, children must be provided all information regarding their disease with consideration for their age and developmental level [5] [35] [36]. In addition, to encourage the provision of information to children with brain tumors, cultural background should be considered. ...
Background: The aim of this study was to clarify the degree of information provision to children with brain tumors, factors influencing this provision, and the relationship between this provision and psychosocial consequences. Methods: A total of 157 parents completed a questionnaire on the degree of information provision to their children and sociodemographic and medical characteristics. Parents and their children completed subscales of the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Relevant factors were investigated using ordinal logistic regression analysis and compared with PedsQL scores by degree of information provision with adjustment for age. Results: The majority of children aged 2-4 years received a low level of information only in regard to medical procedure and preparation. The majority of children aged 5-11 years were I. Sato et al. 452 provided information regarding disease symptoms and treatment, but not actual diagnosis. Approximately half of children aged 12-18 years were provided detailed information including their actual diagnosis. Older children generally received more information regarding their disease (odds ratio [OR] = 1.3 per 1 year old, P < 0.001), while children with intellectual disability received less (OR = 0.2, P = 0.006). The provision of information did not worsen scores for Procedural Anxiety , Treatment Anxiety, Worry, or Communication. Conclusions: To our knowledge, this is the first report on the degree of information provision to children with brain tumors. Parents of children with brain tumors in Japan provide information dependent on age and intellectual level. The disclosure of information to children regarding their disease might affect their trust of medical and health care professionals.
... The overwhelming nature of diagnosis of a childhood cancer is well reported within the literature. Understandably, it can be a period of extreme stress for parents (Dahlquist et al., 1993;Masera et al., 1997;Patistea, Makrodimitri, & Panteli, 2000). A diagnosis of childhood cancer can often raise thoughts of uncertainty, experience. ...
... Throughout the interviews, the immense stress and overwhelming nature the diagnosis placed on both parents and the family system as a whole were emphasized. This was also reflected in the literature discussed above (Dahlquist et al., 1993;Masera et al., 1997;Patistea et al., 2000). All parents reflected on how difficult the initial diagnosis was for them and how the general public perception of leukemia as meaning imminent death had an impact on them at this time. ...
Over the last 30 years, diagnosis and treatment of childhood cancers have improved significantly due to medical research and advancements in technology. Increasingly, parents are taking on the role of providing "nursing" care for their children, including managing emergency situations as well as everyday treatment needs. This study investigated the perceptions and experiences of parents caring for newly diagnosed children with acute lymphoblastic leukemia (ALL) in relation to education given prior to the first discharge from hospital. Using a grounded theory approach, 12 parents of children with ALL from a tertiary pediatric hematology and oncology setting in New Zealand were interviewed using a semi-structured interview technique. Key findings of relevance to clinical practice include the importance of recognizing the emotional strain parents experience following diagnosis and the resultant impact upon how education is understood. Findings may also be applicable to other complex child health areas where education is provided, both in a local and international context. Understanding the family perspective is crucial to enabling clinicians to provide appropriate and informative education to children with ALL and their families.
... Several published guidelines identified 'ideal' psychosocial care for a child with cancer [16][17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34]. None of these documents included all of the information necessary for the complete psychosocial care of a child nor are many explicitly evidence-based or up to date. ...
... • From 1993 to 2002, the SIOP Working Committee published guidelines to address specific clinical challenges faced by pediatric oncology patients, their families, and providers. They provided recommendations for (a) the strategy for psychosocial intervention and structure of socio-economic policies [17], (b) schooling and education during treatment [18], (c) care of long-term survivors [20], (d) communication of the diagnosis [22], (e) maintaining an alliance between family members and the medical team in order to establish open communication [23], (f) helping children with cancer transition from curative to palliative care [24], (g) involving siblings of children with cancer throughout their brothers' and sisters' treatment [25], (h) preventing and/or remediating provider burnout [27], and (i) refusal, noncompliance, and abandonment of treatment in children and adolescents with cancer [28]. While each of these guidelines provides important information on a variety of topics, consolidation is needed. ...
Objective:
The aim of this study was to identify existing guidelines, standards, or consensus-based reports for psychosocial care of children with cancer and their families.
Purpose:
Psychosocial standards of care for children with cancer can systematize the approach to care and create a replicable model that can be utilized in pediatric hospitals around the world. Determining gaps in existing standards in pediatric psycho-oncology can guide development of useful evidence-based and consensus-based standards.
Methods:
The MEDLINE and PubMed databases were searched by investigators at two major pediatric oncology centers for existing guidelines, consensus-based reports, or standards for psychosocial care of patients with pediatric cancer and their families published in peer-reviewed journals in English between 1980 and 2013.
Results:
We located 27 articles about psychosocial care that met inclusion criteria: 5 set forth standards, 19 were guidelines, and 3 were consensus-based reports. None was sufficiently up to date, comprehensive, specific enough, or evidence- or consensus-based to serve as a current standard for psychosocial care for children with cancer and their families.
Conclusion:
Despite calls by a number of international pediatric oncology and psycho-oncology professional organizations about the urgency of addressing the psychosocial needs of the child with cancer to reduce suffering, there remains a need for development of a widely acceptable, evidence-based and consensus-based, comprehensive standard of care to guide provision of essential psychosocial services to all patients with pediatric cancer.
... Guidelines and recommendations regarding psychosocial care and communication in pediatric oncology have been available for many years. [17][18][19] Communication occurs within the complex relationship between health care professionals, patients, and families. Functional communication provides emotional support, guidance, and understanding, and makes it possible to exchange information and respond to emotions. ...
Background:
Communication about illness-related subjects is complex and difficult. To support entire families in pediatric oncology, health care professionals need to know what family members think, but leave unspoken. The aim of this study was to explore how families in pediatric oncology experienced illness-related information and communication with professionals and within the family.
Procedure:
A cross-sectional web survey was used. Families were recruited from one pediatric oncology center in Sweden, 2-3 months after diagnosis. One hundred eighteen family members (ill children, siblings, and parents) representing 27 families filled out age-adapted surveys.
Results:
Eighty-six percent of the parents and 71% of the siblings reported that they had not received enough or any information about how the cancer and its treatment could affect the child's psychological health. The families reported that they did not dare ask professionals questions about psychosocial issues and future-related subjects. Nor did they talk with one another, even though 55% of the parents and 24% of the children wanted to reveal more about how they felt to someone in the family. The parents reported the lowest family communication, and few families had all members reporting the same perception of family communication.
Conclusions:
Much is still left unspoken in pediatric oncology and the needs of the families are prominent. Assessments of each family member's needs might form a basis for professionals to give each person adequate information and family support. An increased awareness in families about family members' different needs might lead to mutual understanding.
... Direct, honest and timely communication with children, adolescents, and their families about the nature of the illness and prognosis is a cornerstone of pediatric cancer care and palliative care (Weaver, 2015). The Psychosocial Committee for the International Society of Pediatric Oncologists (Masera, 1997) has recommended full disclosure to the child at a pace the child can accommodate, following a sharing conference with the parents. Some parents may have concerns based on cultural, religious grounds or personal experiences with cancer about informing their child about the severity of the illness and poor prognosis. ...
This publication is intended for professionals training or practicing in mental health and not for the general public. The opinions expressed are those of the authors and do not necessarily represent the views of the editors or IACAPAP. This publication seeks to describe the best treatments and practices based on the scientific evidence available at the time of writing as evaluated by the authors and may change as a result of new research. Readers need to apply this knowledge to patients in accordance with the guidelines and laws of their country of practice. Some medications may not be available in some countries and readers should consult the specific drug information since not all dosages and unwanted effects are mentioned. Organizations, publications and websites are cited or linked to illustrate issues or as a source of further information. This does not mean that authors, the Editor or IACAPAP endorse their content or recommendations, which should be critically assessed by the reader. Websites may also change or cease to exist.
... However, the moment of diagnosis serves as the foundation for a long-term communicative relationship between the health-care professional, parents or caregivers, and child. 109 Effective communication requires an understanding of how the parent or caregiver and child perceive the situation, the transfer of information, and also emotional support for parents, caregivers, and families. Providing emotional support to families is time-consuming and undoubtedly has an effect on health-care professionals; support to process the personal effect of this work is crucial to ensure that health-care professionals are able to cope with the emotional demands of this work. ...
Many adults diagnosed with a life-threatening condition have children living at home; they and their partners face the dual challenge of coping with the diagnosis while trying to maintain a parenting role. Parents are often uncertain about how, when, and what to tell their children about the condition, and are fearful of the effect on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Health-care professionals have a key role in supporting and guiding parents and caregivers to communicate with their children about the diagnosis. However, the practical and emotional challenges of communicating with families are compounded by a scarcity of evidence-based guidelines. This Review considers children's awareness and understanding of their parents' condition, the effect of communication around parental life-threatening condition on their wellbeing, factors that influence communication, and the challenges to achieving effective communication. Children's and parents' preferences about communication are outlined. An expert workshop was convened to generate principles for health-care professionals, intended as practical guidance in the current absence of empirically derived guidelines.
... However, the moment of diagnosis serves as the foundation for a long-term communicative relationship between the health-care professional, parents or caregivers, and child. 109 Effective communication requires an understanding of how the parent or caregiver and child perceive the situation, the transfer of information, and also emotional support for parents, caregivers, and families. Providing emotional support to families is time-consuming and undoubtedly has an effect on health-care professionals; support to process the personal effect of this work is crucial to ensure that health-care professionals are able to cope with the emotional demands of this work. ...
When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. Evidence-based guidelines are urgently needed for all health-care settings, from tertiary referral centres in high-income countries to resource limited environments in low-income and middle-income countries, where rates of child mortality are high. We place this Review in the context of children's developing understanding of illness and death. We review the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families, and health-care professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents, and caregivers, generated from a workshop of international experts.
... More than 60% of parents of children with cancer treated at two large academic cancer centers reported that their children were present for the initial conversation with the oncologists about their cancer diagnosis and the plan for treatment. Adolescents were included in the majority of conversations, which is in line with the national and international recommendations [18,19], although fewer than half of children aged 7-12 were present. Children with poorer prognoses and with hematologic malignancies were less likely to be present, perhaps reflecting a desire to protect children from difficult conversations about prognosis, and higher medical acuity at the time of diagnosis among children with leukemias. ...
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.
... Cancer treatment for AYAs requires families to make challenging decisions throughout the disease trajectory, including at the time of diagnosis, during disease recurrence, during therapeutic changes, and at the time of end-of-life care (Stewart, Pyke-Grimm, & Kelly, 2012). Current recommendations are that children should be involved in decisions when they are able to do so and choose to participate (Joffe et al., 2006;Masera et al., 1997;Spinetta et al., 2003). ...
Problem identification:
Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively affects outcomes. However, for adolescents and young adults (AYAs) with cancer, little is known about the current state of knowledge about their perspective on and involvement in TDM or the factors influencing AYAs' TDM involvement.
Literature search:
Integrative review focused on AYAs aged 15-21 years, their involvement in TDM, and factors influencing their involvement using the MEDLINE®, PsycINFO®, CINAHL®, and Web of Science databases.
Data evaluation:
4,047 articles were identified; 21 met inclusion criteria.
Synthesis:
Five factors were identified.
Implications for research:
Research is needed to understand AYAs' preferences for TDM, the type and degree of their involvement, and the interactions between factors that contribute to or impede TDM.
... However, in paediatric oncology, professionals must consider the emotional needs and developmental stage of the child and also the emotional needs of their wider family (Forsey, Salmon, Eden, & Young, 2013). National guidelines encourage doctors to communicate directly with children with cancer and involve them in the decision process (Masera et al., 1997), but evidence is limited on how best to do this or what children desire at this time. ...
Being given a diagnosis of cancer is a significant and highly distressing event for both children and their families, but little research has been done to explore and understand children’s feelings. This study aims to understand from the child’s perspective what it feels like to be told you have cancer, with the hope that increased understanding can lead to improved communication and support for children and families. The study uses qualitative methodology. Six children aged 8–12 years with a new diagnosis of cancer took part in two semi-structured interviews at least one week apart. The interviews were conducted using the draw and write technique. The results were analysed using interpretative phenomenological analysis. The report describes the five super-ordinate themes that were identified; initially I felt shocked and scared, chemo is an awful thing, please talk to me; the more I know the better I feel, I will accept treatment and quickly get used to it because I know I will get better and, finally, my family are vital. Implications for clinical practice are discussed. The report highlights the research limitations and areas for future studies.
... International wurden fortlaufend ab 1993 durch ein Komitee der SIOP (Société Internationale d´Oncologie Pédiatrique) (128,129,(192)(193)(194)(195)(196)(197)(280)(281)(282)(283) und durch andere Organisationen wie z.B. AAP, ACT, A(P)OSW, CAPO und ICCCPO (1,5,8,9,43,276) Anmerkung: Die Literaturreferenzen beziehen sowohl auf allgemeine psychoonkologische Beiträge (8,10,43,202,216), als auch auf spezifische Beiträge aus der Pädiatrischen Psychoonkologie (4,5,6,7,9,73,85,88,217,237,272,276). ...
... Last and van Veldhuizen's (1996) seminal study found that children (n = 56 aged 8-16 years) who received more information about their diagnosis and prognosis during the initial stage of the disease were significantly less anxious and depressed than children who received less information or who received the information at a later stage. The International Society of Paediatric Oncology has since recommended that children with cancer should always be provided with developmentally appropriate information at different stages of the ill-ness trajectory (Masera et al. 1997). However, Ringn er et al. (2012), p. 45 contend, 'just as children have a right to receive information. . ...
This study examined participants' views on children's participation in information-sharing and communication interactions. A descriptive qualitative approach was taken with individual interviews held with children (The term 'children' is used to denote both children and adolescents and to avoid cumbersome repetition.) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40) at a children's hospital in Ireland. Data were analysed using the constant comparative method and managed with NVivo (version 8). The findings indicate that professionals strongly supported an open and honest approach to information-sharing; however, this viewpoint was not shared by all parents. The need to maintain hope and spirit and promote an optimistic identity influenced the amount and type of information shared by parents. Children trusted their parents to share information, and valued their parents' role as interpreters of information, advocates, and communication buffers. Most professionals endorsed parents' primacy as managers of information but experienced difficulty navigating a restricted stance. This study adds important insights into the complexities of information-sharing in triadic encounters. Professionals need to maintain an open mind about information-sharing strategies families may choose, remain sensitive to parents and children's information requirements and adopt a flexible approach to information provision.
... One of the basic tenets of patient-and family-centered care is sharing information with patients and families and involving family members in treatment decisions at the level that they prefer (Conway et al., 2006). Numerous professional societies have issued formal guidelines that recommend children's involvement in making their treatment decisions at the level at which they can and wish to be involved (Joffe et al., 2006;Masera et al., 1997;Spinetta et al., 2003). However, recent systematic research reviews indicate that children's decisionmaking involvement is largely dependent on parents' and health care professionals' attitudes and not the ill child's capacity to participate (Coyne, 2008;Martenson, & Fagerskiold, 2008). ...
Secondary analysis of existing qualitative datasets offers an opportunity to efficiently use these difficult-to-collect data to generate hypotheses for future research and expand understanding of the phenomena under study. We conducted a retrospective interpretation of two qualitative datasets regarding childhood cancer treatment decision making to elaborate themes regarding parents' cancer communication (information sharing and involvement of their children in treatment decision making) that were not fully developed in the original analyses. We identified broad variability in parents' cancer communication that was not entirely dependent upon the age of their ill child. We were able to generate multiple hypotheses to help guide our future research.
... Education [5,28,31,32,35,43,45,[50][51][52][53][54][55]: Education about the original cancer disease, treatment, possible late effects, and necessary screening procedures is essential for both survivors and GPs. Both would benefit from basic information on follow-up of childhood cancer survivors. ...
An increasing number of childhood cancer survivors need long-term follow-up care. Different models address this problem, including that of follow-up by general practitioners (GP). We describe models that involve GPs in follow-up for childhood cancer survivors, their advantages and disadvantages, clinics that employ these models, and the elements essential to high-quality, GP-led follow-up care.
We searched four databases (PubMed [including Medline], Embase, Cochrane, and CINAHL) without language restrictions.
We found 26 publications, which explicitly mentioned GP-led follow-up. Two models were commonly described: GP-only, and shared care between GP and pediatric oncology or late effects clinic. The shared care model appears to have advantages over GP-only follow-up. We found four clinics using models of GP-led follow-up, described in five papers. We identified well-organized transition, treatment summary, survivorship care plan, education of GPs and guidelines as necessary components of successful follow-up.
Scarcity of literature necessitated a review rather than a meta-analysis. More research on the outcomes of GP-led care is necessary to confirm the model for follow-up of childhood cancer survivors in the long term. However, with the necessary elements in place, the model of GP-led follow-up, and shared care in particular, holds promise. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
... La comunicazione è un momento essenziale del rapporto tra le persone. Come suggerisce la parola stessa, significa "mettere in comune", trasmettere un messaggio e, ciò che è più importante, farlo comprendere correttamente e quindi condividerlo (5)(6). ...
THERAPEUTIC RELATIONSHIP WITH THE CHILD AND THE ADOLESCENT AFFECTED WITH LEUKEMIA. The main psychosocial purpose in treating childhood cancer is to help children and their families to face the diagnosis of cancer and subsequent consequences. Children and their families, most of whose are in front of this new diagnosis without showing any sign of failure, need our help. We should try from one side to help the child and his/her family who need a very quick support from us, from the other side a controlled and scientifically valid research, finalized to differentiate effective from non-effective interventions, should be carried on. The optimal clinical assistance is related to the application of the best discoveries nowadays available, based on evidence and applied in the local cultural context. The health care team can carefully listen to the children and their families to detect in which way they work and answer to the request of assistance that was offered to them. To modify own approach based on the level of satisfaction of families looking at the type of offered assistance could help in making better service.
... 27 Clearly, effective communication is pivotal to quality palliative care, and others have advocated similar approaches (Table 1). [41][42][43][44][45][46] A recent analysis revealed that barriers to effective communication were one of the primary perceived factors that interfered with optimal end-of-life pediatric care. 40 Data suggest that parents want clinicians to discuss advance care options and to assist them in such complex decision making. ...
Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.
... To facilitate effective communication with adolescent patients, providers should (1) acknowledge patients' feelings, attitudes, and norms; (2) assist patients with development of skills they may need to achieve personal goals; (3) provide up-to-date sexual health information; and (4) be aware and respectful of their patients' sexual values and lifestyle [32]. One article recommends holding a separate session with the adolescent so that the parent does not intrude on the developing relationship between doctor-patient [33]. One researcher concluded physicians need to regulate a patient's access to information and help parents overcome their urge to protect by withholding information [34]. ...
The doctor-parent-adolescent triad is a unique communication challenge, particularly in the area of fertility preservation for adolescents with cancer. This paper provides a preliminary exploration into the barriers experienced by physicians in discussing cancer related fertility issues with patients aged 12-18.
This study used a subset of the data from qualitative interviews with pediatric oncologists.
The majority of physicians agreed that fertility preservation conversations were awkward because of limited options and resources for the technology as well as the existence of a fine line between establishing a sense of trust between doctor and patient, while not excluding parents.
Healthcare providers need training on how and when to broach fertility issues with patients, emphasizing open communication and early disclosure.
... Guidelines in paediatric oncology encourage health providers to share developmentally relevant medical information with young patients and their parents to enable active participation in the decision-making process. [44,45] Unknown, so far, is to what extent this mirrors patients' and parents' preferences. In view of the merits of OFGs as described above, and the awareness that young patients and their parents are hard to include in group discussions, we expected the online mode of focus group discussions the best choice for this population. ...
The purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology.
Qualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8-17), 11 parents, and 18 survivors of childhood cancer (aged 8-17 at diagnosis).
All three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups.
The findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.
... Providing psychological and social support is nowadays an integral part of cancer treatment. The International Society of Pediatric Oncology published a series of guidelines for psychosocial issues in pediatric cancer [28][29][30][31]. The overall goal of the interdisciplinary care is the promotion of the patients' resources from the point of diagnosis, through the entire therapy until the end of rehabilitation. ...
Both cancer diagnosis and the consequent treatment are particularly challenging for adolescent patients. Adjuvant psychological interventions to reduce cancer-related distress are therefore a fundamental part of a multidisciplinary treatment. Assuming that psycho-oncology has to consider developmentally specific aspects, this review summarizes empirical studies of the efficacy and effectiveness of psychosocial interventions for adolescent cancer patients.
Electronic searches were conducted in four databases. Studies were included only if they were exclusively designed for adolescent cancer patients and incorporated a defined outcome measure to evaluate the effects of the implemented intervention.
Only four studies fulfilled the inclusion criteria. One of those studies reported a significant improvement compared with a waitlist control group. The relevant gains were found in the overall level of distress, as well as in additional outcome variables such as knowledge of sexual issues, body image and anxiety about psychosexual issues. The remaining studies revealed no significant changes related to psychological distress and psychosocial functioning.
Taken together, the findings point out that there is a lack of intervention research in psycho-oncology with adolescents. So far, there is only limited evidence for the effectiveness of psychosocial interventions to improve coping with cancer-associated problems in adolescent patients. Future research needs to be done in this population. In order to establish more conclusive results, larger samples and interventions particularly designed for adolescent patients ought to be studied.
Introduction
Despite the potential benefits of effective communication, telling children about cancer, unpredictable and life-threatening conditions is challenging. This study aimed to summarise the communication tools used in cancer communication among children with cancer, caregivers and healthcare professionals.
Methods and analysis
We will conduct a scoping review following the preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews checklist. We will search PubMed (including MEDLINE), Embase, CENTRAL, PsycINFO and CINAHL. We will include the qualitative and quantitative studies that reported the communication tools that tell a child diagnosed with cancer about the cancer-related information. We will summarise the communication tools and the impacts of the tools.
Ethics and dissemination
Formal ethical approval is not required, as primary data will not be collected in this study. The findings of this study will be disseminated through the presentation at the conference and publication in a peer-reviewed journal.
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 [...].
Although pediatric malignancies are rare, approximately 17% of children diagnosed with cancer will die of their disease or treatment related complications. The appropriate palliative care of pediatric cancer patients encompasses quality of life, minimizes suffering, optimizes functioning, and provides support for spiritual, psychosocial, and personal growth. Care required by pediatric cancer patients differs from the care of adult cancer patient care because of different types of common malignancies, expected disease presentations, various stages of cognitive, emotional, and spiritual development, treatments available and response. The limited defined best practices of pediatric palliative radiotherapy have already demonstrated effectiveness of radiotherapy in relieving symptoms from progressive and metastatic disease involving bone, soft tissue, and solid organs. Pediatric oncology patients undergoing palliative radiotherapy in conjunction with an evolving interdisciplinary approach benefit from honest and unarmed communication, systematic symptom management, and incorporation of innovative research and technology for optimal support for the patient, family, and primary care team.
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.
Prognostic disclosure to children has perpetually challenged clinicians and parents. In this article, we review the historical literature on prognostic disclosure to children in the United States using cancer as an illness model. Before 1948, there was virtually no literature focused on prognostic disclosure to children. As articles began to be published in the 1950s and 1960s, many clinicians and researchers initially recommended a "protective" approach to disclosure, where children were shielded from the harms of bad news. We identified 4 main arguments in the literature at this time supporting this "protective" approach. By the late 1960s, however, a growing number of clinicians and researchers were recommending a more "open" approach, where children were included in discussions of diagnosis, which at the time was often synonymous with a terminal prognosis. Four different arguments in the literature were used at this time supporting this "open" approach. Then, by the late 1980s, the recommended approach to prognostic disclosure in pediatrics shifted largely from "never tell" to "always tell." In recent years, however, there has been a growing appreciation for the complexity of prognostic disclosure in pediatrics. Current understanding of pediatric disclosure does not lead to simple "black-and-white" recommendations for disclosure practices. As with most difficult questions, we are left to balance competing factors on a case-bycase basis. We highlight 4 categories of current considerations related to prognostic disclosure in pediatrics, and we offer several approaches to prognostic disclosure for clinicians who care for these young patients and their families.
During the three past decades, although childhood cancer continues considering a threat to life, substantial changes have taken place in the treatment rates. Important advances in treatments have generated significant increases in long-term rates of survival. This rise in life expectancy, mainly associated to the greater aggressiveness of therapeutic procedures, has been accompanied by a great number of physical, psychological and social consequences that have a negative impact in the quality of life of surviving young people. Thus, in last decades one of the main preoccupations of the professionals, who take care of children with cancer, it's to extend the knowledge about the consequences that they will experiment in the next 20 to 40 years. The present work shows the protocol of evaluation and psycho-social intervention that the Spanish Association Against Cancer develops with children and survivors of childhood cancer. The guideline contemplates the development of two phases of action. In first of them, an investigation project it will be realised, that will enable obtain an exhaustive analysis of both survivors and its parents needs, in short and long term. And one second phase of intervention in which a program of psychological attention will be developed.
Ethical and psychological dilemma may occur over the course of childhood cancer. The main problems concentrate over cancer diagnosis disclosure, informed consent, and conflict resolutions. This paper discuss the IPOS recommendations on ethical issues in pediatric oncology.
Communicating with adolescents who have life-threatening illness includes not only providing them with information about their condition but also involving them in management from the moment of diagnosis to the moment of death if their illness is terminal. In this article, cancer provides the context for the story of one young woman as told by her mother. Although the specific experiences recounted are highly personal, they illustrate many of the principles of communication important to the provision of good care and caring during extraordinarily difficult times: When and how much should the teen patient be told and by whom? How much should the teen participate in decision-making and about which issues? What are dying teens most concerned about and how should physicians respond to their questions, fears, and hopes? And, very importantly, what motivates a person to become a physician and how does his/her humanness influence thoughts, feelings, and behaviors when confronting the need to not only deliver, but also personally cope with, bad news?
Professional guidelines encourage physicians to provide children with as much information regarding their health as deemed developmentally and emotionally appropriate. However, empirical research indicates that in clinical practice, an open discussion with children about cancer is often lacking. This study explores impeding factors to and possible strategies for open communication of cancer diagnosis to children from the perspectives of parents and physicians.
Semi-structured interviews were conducted with 18 parents of children with cancer and 10 treating oncologists. The patient sample was obtained from three pediatric units in Romania. Interviews were transcribed verbatim and interpreted using thematic analysis. Inductive open-coding procedures identified participants' accounts regarding their experiences with cancer diagnosis and treatment. Final themes were selected by grouping codes that formed a pattern in the data.
An interplay of mainly three different factors-information overload and emotional turmoil, lack of knowledge and skills for disclosing the diagnosis, and assumptions about burdening the child when discussing cancer-restricted parent-patient communication and subsequently affected physician-patient exchanges. Oncologists recommended open communication at diagnosis, but left the final decision to the parents. They adapted their communication style with patients to parents' preference.
Although physicians need to respect the wishes of children's legal representatives, they also have a duty to promote patients' best interests. We recommend that physicians employ a proactive stance in ensuring that children with cancer are appropriately informed about their diagnosis. In case of parents' arduous objections to full disclosure, an ethical consultation should be considered. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.
© 2015 Wiley Periodicals, Inc.
Objective:
This study aims to evaluate the childhood cancer experience in commercially produced, readily available films that include a character with childhood cancer, with a particular focus on psychosocial care.
Methods:
We reviewed 29 films, using quantitative and qualitative content analysis, to identify the medical and psychosocial characteristics of the cinematic childhood cancer experience. We rated psychosocial support on a 5-point scale (0 to 4) based on the availability and efficacy of support characters in the categories of nonprofessional internal (eg, parent), nonprofessional external (eg, friend), professional medical (eg, oncologist), and professional psychosocial (eg, social worker) supports.
Results:
Film depicts an unrealistic, bleak picture of childhood cancer, with a 66% mortality rate among the 35 characters evaluated. Psychosocial supports portrayed in film are generally limited to resources already available to families before the cancer diagnosis: mean ratings across films were 2.4 for both nonprofessional, 1.6 for professional medical, and 0.3 for professional psychosocial supports (Kruskal-Wallis χ3=43.1051, P<0.0001). Seven main themes emerged: disruption, social impact, psychological impact, physical toll, struggle/war/fight, coping, and barren landscape. Film generally depicts images of an isolated family courageously battling cancer alone with limited support from a treatment team solely dedicated to medical care.
Conclusions:
Commercially available films minimize the importance of the psychosocial dimension of care, which can perpetuate stigma around psychosocial needs and interventions. These films can be used to encourage discussion about how to optimize psychosocial care in pediatric oncology so that such care is not abandoned in actual practice as it is, for entertainment purposes, on the screen.
Background
Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. ProcedureWe conducted a cross-sectional survey of 194 parents of children with cancer (response rate 70%), treated at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Mass, and the children's physicians. Parents were asked to report the quality of information received about the child's cancer in several domains. ResultsMost parents reported that information about their child's cancer had been excellent (49%) or good (41%) overall, and ratings were similar for information about diagnosis (P=0.62) and treatment (P=0.59). Fewer parents felt they received high quality information about how cancer treatment is working (P<0.001), likelihood of cure (P<0.001), what the diagnosis means for the future (P<0.001), and whether there is a cause for the child's cancer (P<0.001). In multivariable models, parents were more likely to consider information of high quality when they also rated physician communication style highly. The accuracy of their knowledge on likelihood of cure and the child's future limitations, however, was not associated with quality ratings. Conclusions
Although parents feel that they have received high quality cancer information overall, parents feel they receive lower quality information about issues relating to the child's future. Yet quality ratings are not associated with their actual knowledge. Parent perceptions of quality represent one, but not the only, facet of communication quality. Pediatr Blood Cancer 2013;60:1896-1901. (c) 2013 Wiley Periodicals, Inc.
Advancing pediatric palliative care is desperately needed to support the physical, emotional, cultural, spiritual, and psychosocial needs of children and families who live with life-threatening illnesses. Although educational resources and standards of practice related to this topic have been developed, dissemination and implementation of programs have been slow to progress. The purpose of this case study is to present the lived experiences of an adolescent with leukemia and his family to illustrate how health care providers may benefit from receiving enhanced palliative and end-of-life care education.
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.
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).
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.
To investigate the preferences of children with cancer, their parents, and survivors of childhood cancer regarding medical communication with child patients and variables associated with these preferences.
Preferences regarding health-care provider empathy in consultations, and children's involvement in information exchange and medical decision making were investigated by means of vignettes. Vignettes are brief descriptions of hypothetical situations, in which important factors are systematically varied following an experimental design. In total, 1440 vignettes were evaluated by 34 children with cancer (aged 8-16), 59 parents, and 51 survivors (aged 8-16 at diagnosis, currently aged 10-30). Recruitment of participants took place in three Dutch university-based pediatric oncology centers. Data were analyzed by multilevel analyses.
Patients, parents, and survivors indicated the importance of health-care providers' empathy in 81% of the described situations. In most situations (70%), the three respondent groups preferred information about illness and treatment to be given to patients and parents simultaneously. Preferences regarding the amount of information provided to patients varied. The preference whether or not to shield patients from information was mainly associated with patients' age and emotionality. In most situations (71%), the three respondent groups preferred children to participate in medical decision making. This preference was mainly associated with patients' age.
To be able to adapt communication to parents' and patients' preferences, health-care providers should repeatedly assess the preferences of both groups. Future studies should investigate how health-care providers balance their communication between the sometimes conflicting preferences of patients and parents.
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.
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.
Research has indicated that information and social support may have helped children and adolescents with cancer to cope with their illness and lead normal lives. However, recent researchers have reported that youths with cancer express a clear interest in receiving more information and social support. This study reviewed research on information and social support for children and adolescents with cancer to understand their needs. Young patients with cancer showed high uncertainty about cancer. Besides, adolescents with cancer were more in conflict with their parents than healthy youths. Discussions on future plans or death are difficult for young people with cancer. They also are frequently absent from school over time. Moreover, they want to make healthy friends. To fulfill the needs of these youths, nurses should be aware not only of individualized information and social support, but also of these factors from an ecologic perspective. Further qualitative research is required to identify the needs of youths with cancer and resolve these issues.
A total of 116 long-term survivors of childhood malignancies were interviewed by a psychologist and a psychiatrist, who independently assigned adjustment ratings to each patient. Semistructured interviews determined how soon after the initial diagnosisis survivors learned they had cancer and whether they had been told by a parent or physician or had learned of the diagnosis in some other way. Good psychosocial adjustment was associated with patients' early knowledge of the diagnosis. A high percentage of the survivors, their parents, and siblings felt that the cancer diagnosis should be shared with the child early on.
A new approach to communicating the diagnosis of leukemia to the young child was carried out in the Pediatric Hematology Department in Monza over a 2-year period (1989 to 1991). Fifty patients ages 6 to 15 years were entered into the program. A physician communicated the diagnosis of leukemia directly to the child without the presence of the parents. A set of 25 slides was prepared. A garden with flowers and weeds was used as an analogy for leukemia. All 50 of the children expressed gratitude for understanding their disease and the families for being able to talk with their children about the disease without panic and stress.
When faced with the tragedy of losing a child to a terminal illness, communication is a crucial factor in alleviating stresses and anxieties experienced by the child and his family. Two opposing modes of communication have been advocated-the protective approach in which the ill child is shielded from knowledge of the disease diagnosis and prognosis-and the open approach, which encourages provision of an environment in which the child feels free to express concerns and ask questions about his condition. This paper is devoted to an examination of family communication about the crisis of the dying child from these two perspectives. The rationale for the protective and open approaches is discussed in terms of the sources of the child's anxiety, his conception of death, and his observed behavioral response to the illness.
Parents of seriously ill children often struggle with the decision of whether and what to tell their child about the illness,
treatment, and prognosis. Medical staffs, psychologists, and parents have advocated either “protective” or “open” approaches
to this communication problem. This paper empirically investigated parents' choices regarding what to tell their child with
cancer. Moreover, it analyzed several demographic and contextual correlates of the telling decision, stressing the importance
of the child's age, sibling structure, parents' religious or existential orientation, and parental access to information and
support for a particular approach. The family's initial shock at the diagnosis, changes in the child's medical condition,
and the occurrence of uncontrollable events in the medical and social environment also influence what the child is told.
Communication with the parents of children with cancer is essential. Denial of information given, confusion over details, and emotional distress all prevent comprehension by parents. Information-giving sessions were taped and the effect this had on parental contentment and understanding was assessed. The use of simpler language by doctors and repetition of complex information was requested by parents. Those parents who have not reached emotional homeostasis will not absorb what is said to them, but replaying the tapes may assist in overcoming this.