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The Benefits of Family-Centered Care for Parental Self-Efficacy and Psychological Well-being in Parents of Children with Cancer

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Objectives The purpose of this study was to examine the direct and indirect links between the perception of family-centered care (FCC) and psychological well-being via the perceived self-efficacy of parents of children with cancer. This study also sought to identify the potential moderators of these links (treatment status and patient age). Methods This cross-sectional study was conducted at the pediatric oncology wards of two Portuguese public hospitals. The consecutive sample comprised 251 parents (87.6% mothers) of children/adolescents (8−20 years old) diagnosed with cancer. Participants completed self-report questionnaires measuring their perception of family-centered care (family-centered services and providing general information), perceived self-efficacy (regarding healthcare and parenting role) and psychological wellbeing. Results Results from the Structural Equation Modeling suggested that parents’ perception of FCC was indirectly, but not directly, linked to psychological well-being via perceived self-efficacy. Multi-group analyses suggested that this mediation model was valid across treatment status (on vs. off-treatment) and patient age groups (children vs. adolescents). Conclusions These findings highlighted that, through the implementation of FCC, healthcare professionals may promote parents’ perceived self-efficacy and, consequently, their psychological well-being. Results also suggest that FCC may equally operate on parents’ psychosocial functioning, regardless of treatment status or patient age. Overall, our findings reinforced the benefits of FCC practices in pediatric oncology wards.
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Journal of Child and Family Studies (2019) 28:19261936
The Benets of Family-Centered Care for Parental Self-Efcacy and
Psychological Well-being in Parents of Children with Cancer
Ágata Salvador 1Carla Crespo 1Luísa Barros 1
Published online: 19 April 2019
© Springer Science+Business Media, LLC, part of Springer Nature 2019
Objectives The purpose of this study was to examine the direct and indirect links between the perception of family-centered
care (FCC) and psychological well-being via the perceived self-efcacy of parents of children with cancer. This study also
sought to identify the potential moderators of these links (treatment status and patient age).
Methods This cross-sectional study was conducted at the pediatric oncology wards of two Portuguese public hospitals. The
consecutive sample comprised 251 parents (87.6% mothers) of children/adolescents (820 years old) diagnosed with cancer.
Participants completed self-report questionnaires measuring their perception of family-centered care (family-centered ser-
vices and providing general information), perceived self-efcacy (regarding healthcare and parenting role) and psychological
Results Results from the Structural Equation Modeling suggested that parentsperception of FCC was indirectly, but not
directly, linked to psychological well-being via perceived self-efcacy. Multi-group analyses suggested that this mediation
model was valid across treatment status (on vs. off-treatment) and patient age groups (children vs. adolescents).
Conclusions These ndings highlighted that, through the implementation of FCC, healthcare professionals may promote
parentsperceived self-efcacy and, consequently, their psychological well-being. Results also suggest that FCC may
equally operate on parentspsychosocial functioning, regardless of treatment status or patient age. Overall, our ndings
reinforced the benets of FCC practices in pediatric oncology wards.
Keywords Family-centered care Parents Pediatric cancer Psychological well-being Self-efcacy
Pediatric cancer is a life-threatening condition requiring
intensive treatments with adverse side effects and long-term
impairments for the child (Long and Marsland 2011; Pat-
terson et al. 2004). Unsurprisingly, cancer poses signicant
challenges for the ill child and also for his/her family
(Patterson et al. 2004), especially for parents, who are
responsible for providing ongoing care. Most parents cope
well with this disruptive experience; however, a subset of
them report psychological distress (e.g., anxiety and
depressive symptoms; see Vrijmoet-Wiersma et al. 2008,
for review) and poorer quality of life (Klassen et al. 2012).
The risk for parentspsychological distress arises from
the experience of being simultaneously a parent and a
caregiver of a child with a serious health condition (Raina
et al. 2004). Immediately after the diagnosis, parents must
learn to perform difcult tasks, such as administering
medication, monitoring side effects, and planning medical
appointments (Clarke et al. 2005; Klassen et al. 2012). Due
to the technical and emotional requirements of these new
obligations, parents may have doubts about whether they
can successfully perform their new and unexpected role as a
caregiver. Simultaneously, parents must carry on with the
usual care requirements of their child (Clarke et al. 2005),
adding in the challenges brought on by cancer, such as the
childs intense emotional reactions (Patterson et al. 2004)
and behavioral changes (Clarke et al. 2005). These changes
in the parenting role may undermine parentscondence to
successfully handle their childs problems. In fact, mothers
of children with cancer reported a less positive image of
themselves as mothers compared to the mothers of healthy
children (Caroli and Sagone 2014). Similarly, parents of
children with diabetes reported lower self-efcacy regarding
*Ágata Salvador
1CICPSI, Faculdade de Psicologia, Universidade de Lisboa,
Lisboa, Portugal
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... Finally, self-efficacy (SE), a caregiver trait, reflects the beliefs in one's personal ability to successfully cope with unusual, uncertain, and/or stressful circumstances [33,34]. Strong SE among parents of children diagnosed with cerebral palsy is associated with lower CB [35], lower stress [36], and better psychological well-being in parents of children diagnosed with cancer [37] and pediatric type 1 diabetes [38]. Evidence suggests that high parental SE is associated with better child seizure management [39], and the performance of effective stress-related coping strategies (planning and active coping) in parents of children with intellectual and developmental disabilities [40]. ...
... We found that self-efficacy serves as a protective attribute against caregiver burden. Previous studies among parents of children diagnosed with chronic conditions have evidenced the fundamental role of caregivers' self-efficacy and its positive impact on stress [36], psychological well-being [37,38], and care management [39], as well as the utilization of effective, stress-related coping strategies [40]. This finding extends the understanding of the universal fundamental role of caregiver's self-efficacy and its association with care-giving outcomes among Israel's most impoverished minority population-the Bedouins. ...
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A paucity of research exists on caregiving burden (CB) and the factors associated with it among minority groups, such as Bedouin mothers of children diagnosed with epilepsy (CDE). The aim of this study was to explore associations between CB and care-recipients' characteristics, contextual factors, and caregivers' characteristics among those mothers. Methods: A total of 50 mothers completed self-report questionnaires while visiting pediatric neurology outpatient clinic centers, using valid and reliable measures. Results: Bivariate associations were found between social support, number of medications, and CB. General self-efficacy and place of residence emerged as significant predictors of caregiver burden. Conclusions: These findings provide health professionals with a better understanding of the factors that should be assessed in order to address caregiver burden among Bedouin mothers of CDE. Understanding the unique characteristics and culture of the Bedouin community can help professionals in targeting caregivers with a lower sense of self-efficacy, and those that reside in Bedouin cities, in order to reduce their caregiving burden.
... Through respect for family preferences, honest communication, shared decision-making, and a strengths-based approach [2], family-centered care can lead to better health outcomes, improved patient and family care experiences, increased clinician and staff satisfaction, and decreased costs [3][4][5]. Specific to pediatric oncology, when parents feel like they are receiving family-centered care, their reported psychological wellbeing and self-efficacy improve [6], alongside their empowerment to advocate for their child and meet their definition of being a "good parent" [7]. ...
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Purpose A childhood cancer diagnosis threatens the health, safety, and security of the child and whole family unit. A strong relationship between the healthcare team and family is integral to provision of holistic support during this time of crisis. Family-centered care necessitates a fluid, therapeutic relationship between parents and the child’s healthcare team. This study investigated bereaved parents’ perspectives on their relationship with their child’s care team and the impact of these relationships on their coping across the cancer trajectory and into bereavement. Methods Thirty-one parents whose child died from cancer between 1 and 6 years prior to study enrollment participated in semi-structured interviews about their relationships and interactions with their child’s healthcare team across the illness course and into bereavement. We audio-recorded interviews, transcribed them verbatim, and utilized a codebook thematic analysis approach to analyze interview transcripts. Results Four themes emerged across interviews with parents describing their perceptions of the parent-clinician relationship: (1) a collaborative approach improves perceptions of care, (2) professional trust is core to the relationship, (3) parental personal preference and bias can limit relationship-building, and (4) meaningful connections form on an emotional, individualized level. These themes highlight relational patterns between parents and clinicians that can promote or erode alliance and collaboration. Conclusion Bereaved parents recognize key attributes that influence the parent-clinician relationship. Educating clinicians about parent-identified positive modifiable behaviors (e.g., communication deficits) and awareness of non-modifiable care factors (e.g., individual personality preferences) may enable clinicians to strengthen relationships with parents and ultimately improve quality of care.
... In this case, the mother's ability and belief in caring for children with cancer can be seen from the high self-efficacy that mothers have in caring for children with cancer. 29,30 The majority of mothers in this study were not working or working precarious as many as 71 (61.86%) people with a family income of 1-5 million per month as many as 61 (51.70%) people. Cancer tends to go undiagnosed in lowincome countries due to lack of awareness or lack of diagnostic equipment. ...
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Cancer is the main cause of death in children in Indonesia. Childhood cancer is cancer that attacks children under 18 years old, including children who are still in the womb. Mothers play a major role in the process of child development. This study aims to identify the mother's self-efficacy in the care of children with cancer. This study uses a quantitative descriptive design. Maternal self-efficacy data was collected using a mother's self-efficacy questionnaire in carrying out treatment for cancer children modified from Bandura's Theory. The questionnaire used a Likert scale and data collection was carried out from February to July 2022 with 118 respondents who were mothers of children with cancer. The results show that mothers who have high self-efficacy will have high ability or confidence in caring for children with cancer, so they can accompany children in the process of child care, treatment, and healing. The mother's role is very important in determining the success rate of the treatment process and the survival of children with cancer.
... The warm attitude of the parents will help develop nerve cells and the child's intelligence. Furthermore, not comparing children with other children, is one of the wise attitudes shown by parents (Salvador et al., 2019;Zhang et al., 2021). With such a pattern of parenting, parents will help children to develop their psychosocial life well. ...
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Character building in adolescents starts from childhood and continues throughout the life span. Character building in adolescents is associated with psychosocial development and is very important because it will be a strong foundation for their personality. The purpose of this study was to empirically test the influence of parenting on character building in adolescents. As many as 415 adolescents were involved in the study. The sampling technique used is Cluster Random Sampling. Tools used in this study are in the form of two scales, namely Character Building Scale and Parenting Scale. The scale of youth character building includes three indicators: peace, respect for difference, and awareness. The parenting scale consists of three indicators: parental cooperation, child tolerance, and warmth. Date are analyzed using Simple Regression Analysis. This study showed that, although less significant, parenting influences character building in adolescents. Understanding that the impact of parenting on character formation in adolescents is less critical, in character formation in adolescents it is therefore necessary to pay attention to other factors, namely schools and communities. This study also provides a strengthening understanding that adolescents with cheerful character receive positive social support from their social environment.
... Health care services attending children with chronic illness should evaluate the caregivers' mental health and psychological resources to choose and deliver effective interventions. Evidence shows that interventions aimed at families with chronically ill children focused on social support (Salvador et al., 2019) and problem-solving skills (Santos, 2020) benefit caregivers' self-efficacy and mental health. Those two parental attributes favor effective parental practices that are associated with lower rates of child behavior problems. ...
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Childhood chronic illness is associated with deleterious effects on caregivers’ mental health and children’s socio-emotional development. This study investigated the mediation role of caregivers’ mental health on the association between children’s chronic illness and internalizing and externalizing behavioral problems in a sample of low-SES Brazilian families. Participants comprised 111 primary caregivers of 113 children aged between 7 and 11 years. A sample of 57 caregivers of children with chronic illness and a comparison group of 54 caregivers of healthy children were assessed regarding the following variables: family SES (Hollingshead criteria); caregivers’ sleep disturbances (PSQI), common mental disorders symptoms (SRQ-20); stress (LISS); and children’s internalizing and externalizing problems (CBCL/6-18). The chronic illness group scored higher than the healthy group in all the assessed variables, with the exception of the externalizing problems variable. Moreover, caregivers’ mental health problems presented positive correlations with children’s behavior problems and negative correlations with family SES. Using SEM, mediation analyses revealed a unidimensional latent variable, caregiver mental health problems, which mediated the relationship between children’s chronic illness and their behavior problems. Children’s chronic illness was associated with higher levels of mental health problems in caregivers, which in turn was linked to children’s higher externalizing and internalizing problems. Psychosocial intervention and policies addressing caregivers’ mental health and financial support to low-income families may benefit the socio-emotional development of chronically ill children.
... Some parents reported that the dilemma of caring for other children, while one child was diagnosed with cancer increased their stress levels, resulting in poor parental well-being [46]. To reduce such stress, on the one hand, social workers need to help the parents to solve their childcare dilemmas by developing an effective support system; on the other hand, family-centred interventions should be implemented to enhance the family functions of the parents and promote their well-being [47]. ...
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Purpose Depressive symptoms are among the most common afflictions that plague the parents of children with cancer. Given that resilience is an important factor that inhibits the development and progression of depressive symptoms, it can be harnessed as a potential solution for this psychological issue. This study aimed to identify the latent classes of resilience in the parents of children with cancer and explore the relationships of these classes with depressive symptoms. Methods The study was conducted in three tertiary hospitals in mainland China. The parents of children (0–19 years old) with cancer were invited to participate in the study. We used standardised self-report questionnaires to collect data. A latent class analysis was performed to identify the classes of resilience in the parents of children with cancer. Results The study recruited 258 participants. Four classes of resilience were identified, namely, good adaptation and optimism (24.9%), high strength and low control (12.1%), moderate resilience (37.3%), and maladaptation and low tenacity (25.6%). The mothers (OR = 3.48, P = 0.003) and parents with more than one child (OR = 2.73, P = 0.023) were more likely to belong to the maladaptation and low tenacity class. The depressive symptoms experienced by the participants differed significantly between the four classes of resilience (F = 30.80, P < 0.001). Conclusion Targeted interventions should be developed and implemented based on the characteristics of each class of resilience to maximise the effectiveness of interventions and thereby promote parental well-being.
The purpose of this article is to further develop the concept of family-centered care (FCC) in childhood cancer using Rodgers’ evolutionary method of concept analysis. A search of the existing literature related to the overarching concept of FCC revealed several concept analyses specific to hospitalized children and children with chronic illness; however, none of these were specific to children with cancer. Five defining attributes of FCC in childhood cancer were identified through this concept analysis: ripple effect, customized care, family functioning, collaboration, and communication. A definition of FCC in childhood cancer is offered based on identified characteristics of the concept. Findings of this concept analysis provide a starting point for on-going development of the concept of FCC in childhood cancer and may facilitate more rigorous nursing studies involving FCC in childhood cancer.
Background: Neuroblastoma, the most common extra-cranial solid tumor found in children, carries a high mortality rate due to challenges with metastatic disease at diagnoses and relapse. 131I-Metaiodobenzylguanidine (I-MIBG) therapy provides targeted radiotherapy to treat neuroblastoma, but requires children to be isolated for radiation exposure, with limited access to the healthcare team while hospitalized. There is minimal research outlining the nurses' perspectives on caring for this patient population. Therefore, the aim of this study was to describe the nurses' experiences caring for children receiving 131I-MIBG therapy, focusing on nursing care, challenges, radiation exposure, and preparation. Methods: Ten nurses were recruited using purposeful sampling for this qualitative descriptive study. Semi-structured interview guides and conventional qualitative content analysis guided the data collection and analysis. Results: Nurses overwhelmingly felt isolated from their patients and a decreased sense of connection with the child. Although nurses felt prepared, they had more anxiety with the first patient experience and identified that parent engagement was essential. Overall, nurses shared they had support from written materials outlining the protocols, and members of the multidisciplinary team. More concern for radiation exposure was expressed by nurses of childbearing age and with handling bodily fluids. Discussion: Findings suggest that nurses would benefit from simulation experiences to help prepare for radiation exposure safety, strategies to engage the family in the child's care, and interacting with a child in single-room isolation. Because programs differ around the US, additional research exploring nurses' experiences is warranted to evaluate the best successes in providing 131I-MIBG therapy.
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This study examines adult childhood cancer survivors' memories about diagnosis, coping, and life effects of cancer. This qualitative study used inductive content analysis to analyze open-ended responses completed in a survey conducted in 2018. 27 adult survivors (15 male, 12 female) of childhood cancer, ranging in age from 20-39, who were at least 5 years post treatment. Participants recruited through Amazon Mechanical Turk responded to a survey which included open-ended questions about experiencing childhood cancer to examine their: (1) memories of initial reactions to cancer; (2) memories of coping during cancer; and (3) reflections of the cancer experience on who they are today. Inductive content analysis was performed to reveal categories related to the stories shared by participants regarding their memories of childhood cancer experiences. Participants' memories of diagnosis reflected categories such as psychological reactions and family support. Memories of coping reflected themes of family support and distraction. Participants' reported strength and resilience as impacts of cancer on their present lives. These findings indicate that survivors of childhood cancer have strong, specific memories about diagnosis and coping during cancer and highlight the potential long-term implications of having cancer. The findings also illustrate the importance of appropriate psychosocial support for childhood cancer patients and survivors.
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This study investigated the impact of parental self-representation on perceived stress and support in mothers of children in cancer treatment compared to mothers of healthy children. Measures: the Perceived Support Scale (De Caroli & Sagone, 2013), the Perceived Stress Scale (Cohen et al., 1983), and Semantic Differential Technique for Parental Self (De Caroli & Sagone, 2011). Results: Mothers of children in cancer treatment obtained higher levels of stress and perceived support than control group; additionally, mothers of children in cancer treatment showed a less positive image of parental self than control group. Negative correlations between levels of perceived stress and parental self and positive correlations between levels of support and parental self were found. (C) 2013 The Authors. Published by Elsevier Ltd.
Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.
The diagnosis of pediatric cancer is one of the most stressful situations a child and family must face. It presents an overwhelming series of stressors, not the least of which is the possibility of the child’s death. Although the survival rate for childhood cancer has improved significantly (from nearly always fatal in the 1950s and 1960s to nearly 75% survival at present), the treatments remain lengthy and intensive, involving fundamental changes in the child and family’s lives. The chapters that follow in this book present a thorough discussion of the various psychological issues in pediatric hematology/oncology. This chapter begins with an overview of what is meant by coping and then focuses on three main questions: (a) What is the impact of pediatric cancer? That is, with what must children and families cope? (b) How do they cope? And, finally, (c) how is coping related to positive adaptation? We also discuss the theoretical and methodological issues involved in studying coping and adaptation. As there is a subsequent chapter related to families in this volume, we focus primarily on the child, adolescent, and young adult with cancer. Coping is a process that must always be considered in a situational context because it may vary across situations and over time (Compas, Worsham, &Ey, 1992; Fields & Prinz, 1997). It follows that taking a longitudinal approach toward understanding the stressors and demands placed on a child and family as they progress through the experience of cancer is essential. Despite this clinical knowledge and seemingly universal acknowledgment of the process nature of coping, most studies have assessed coping with pediatric cancer at a single point or phase (Compas et al., 1992), and it has often been necessary to extrapolate assumptions about the process by combining results from separate studies. We present a picture of the coping tasks that children and their families face from diagnosis through and beyond treatment. In general, the descriptions of the “natural history” of adaptation (Natterson & Knudson, 1960) from early studies (Binger et al., 1969; Chodoff, Friedman, & Hamburg, 1964; Futterman & Hoffman, 1973) remain useful, although the type and duration of treatment as well as prognostic factors may have changed.
When a child is diagnosed with cancer, his or her entire family is affected. Parents are shocked and devastated when they learn of the cancer diagnosis and soon after diagnosis are responsible for making difficult treatment decisions that may cause their child pain and fear. Siblings may witness the physical and emotional pain of their brother or sister and their parents and experience sudden, extended separations from them. Family roles and responsibilities shift to accommodate cancer treatment and to attend to the needs of the ill child. These new demands must be balanced with the family’s previous dynamics and their implicit goals of fostering growth and development within the family. Furthermore, the reactions of individual family members have an impact on each other and can influence the way in which the child approaches cancer treatment (i.e., procedure-related distress and adherence). The purpose of this chapter is to discuss issues pertinent to the family when a child is on treatment for cancer. Like all childhood illnesses, childhood cancers occur within a complex network of social systems, such as health care, school/peers, and the family (Kazak, Rourke, & Crump, 2003). A helpful framework for conceptualizing the important social contexts that influence and are influenced by a developing child is the social ecology model (Bronfrenbrenner, 1977). This model proposes that the child is at the center of many nested social systems, typically depicted as a series of concentric circles surrounding the child. Large macrosystems such as culture and societal values comprise the outermost circle, and smaller, more immediate microsystems such as the family, neighborhood, and school are depicted nearer to the child. Although all of these systems are important in the development of a child and useful for understanding adaptation of children with chronic illnesses (Kazak, 1989; Kazak & Christakis, 1996), the most important and immediate social system that involves the child is his or her family. Our most basic conceptualizations of the ways in which families work stem from biologically based general systems theory (Engle, 1980; von Bertalanffy, 1968). Systems theory is inherently integrative and complex and highlights principles of organization and interrelatedness.
Drawing on a social determinants of health framework, we evaluated associations between perceived family-centered care (FCC) and positive developmental outcomes for youth with special health care needs across six different family structures (married biological families, cohabiting biological families, married stepfamilies, cohabiting stepfamilies, divorced/separated single-mother families, and never-married single-mother families). Using data from the 2011-2012 National Survey of Children's Health, we found that married biological families perceive greater FCC than do other family structures. Perceived FCC was positively associated with all three positive youth outcomes evaluated (children's health, participation in extracurricular activities, and flourishing) in married biological families, and two of the three outcomes (children's health and flourishing) in married stepfamilies and divorced/separated single-mother families. Implications for health care provision and future research with structurally diverse families are discussed.
Introduction: Family-centered care (FCC) is a health-care delivery approach endorsing the support and participation of families. To date, little research has addressed the associations between FCC and adaptation outcomes specifically in the context of pediatric cancer. The main objective of this research was to identify the direct and indirect associations, through caregiving burden, between parents' FCC and quality of life (QoL) and life satisfaction. Method: Participants were 204 parents of children diagnosed with cancer. Parents answered the Measure of Processes of Care questionnaire to evaluate their perceptions of FCC in 2 domains: family-centered services and provision of general information. Perceptions of caregiving burden (Revised Burden Measure), QoL (EUROHIS-QoL-8), and life satisfaction (Satisfaction with Life Scale) were also assessed. Pediatric oncologists provided information on the child's diagnosis and treatment status. Results: Findings showed that when parents perceived their children's health care as more family-centered, they also reported lower caregiving burden. Family-centered services were indirectly linked to QoL and life satisfaction through caregiving burden. Discussion: This research suggests that the way parents perceive formal care, namely as being more or less family-centered, may influence the burden they experience as caregivers of a child with cancer and, indirectly, their adaptation. These findings highlight the relevance of gaining greater understanding of the interaction between the family and the health-care systems in the context of pediatric cancer. (PsycINFO Database Record