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OBJECTIVE: The interplay and longitudinal associations between positive and negative illness-related experiences in childhood cancer survivors and their families remain unclear. Therefore, benefit finding, cancer-related worries, depressive symptoms, and life satisfaction were prospectively investigated in childhood cancer survivors and parents. Directionality of effects and interactions between benefit finding and cancer-related worries in predicting general well-being were examined. METHODS: Childhood cancer survivors (n = 125 at T1; aged 14-25), mothers (n = 133 at T1), and fathers (n = 91 at T1) completed two annual questionnaires on benefit finding, cancer-related worries, depressive symptoms, and life satisfaction. Cross-lagged panel analyses including benefit finding, cancer-related worries, their interaction, and depressive symptoms or life satisfaction were conducted in survivors, mothers, and fathers. RESULTS: Relatively high stability coefficients were found for all study variables. In survivors, cancer-related worries predicted relative increases in depressive symptoms and benefit finding over time. Benefit finding predicted relative increases in life satisfaction over time and buffered negative effects of cancer-related worries on life satisfaction. In mothers and fathers, positive correlated change at T2 (the correlation between residuals at T2) indicated that relative change in benefit finding over time was positively related to relative change in cancer-related worries. CONCLUSION: Benefit finding was related both to positive well-being and negative illness experiences, which calls for more research to unravel the different functions of benefit finding over time. Clinicians should be encouraged to attend to positive illness experiences along with more negative ones to obtain a more nuanced view on the illness experiences of survivors and their families.
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Supervivientes de Cáncer , Neoplasias , Ansiedad , Femenino , Humanos , Estudios Longitudinales , Neoplasias/terapia , Padres , Encuestas y Cuestionarios , SobrevivientesRESUMEN
BACKGROUND: In childhood acute lymphoblastic leukemia (ALL), radiotherapy for CNS prophylaxis is not used in frontline therapy anymore. Standard treatment for ALL nowadays consists of polychemotherapy. Therefore, assessment of potential chemotherapy-induced cognitive side effects becomes important. Although neurotoxicity was demonstrated in cross-sectional studies, longitudinal studies remain scarce. PROCEDURE: We evaluated intellectual development of 94 pediatric ALL patients between 1990 and 1997, diagnosed before the age of 12 years, treated according to the European Organisation for Research and Treatment of Cancer Children's Leukemia Group 58881 protocol. Three assessments of the Wechsler Intelligence Scale for Children Revised were performed since diagnosis, according to age. Using repeated measures regression analysis, we investigated the effect of gender (low versus increased) risk group, parents' education, age at diagnosis, intelligence quotient (IQ) subscale (verbal (VIQ) versus performance (PIQ) intelligence), and test session. RESULTS: PIQ scores were lower than VIQ at baseline (-5.3 points on average, p = 0.0032), yet PIQ increased more strongly (PIQ: +3.9 points per test session; VIQ: +0.8, p = 0.0079), so this baseline difference disappeared (p = 0.0079). There were no clear effects of gender (girls: +0.6 points; p = 0.78) or risk group (low risk: +1.5 points; p = 0.49), but IQ scores were higher when one parent had followed higher education (+9.5 points, p < 0.0001). Finally, diagnosis at younger age predicted lower IQ scores (-1.3 points per year, p = 0.0009). CONCLUSION: Given that IQ scores did not decline, our findings demonstrate a stable pattern. However, the lower PIQ scores at baseline may indicate that performance functioning is vulnerable to acute neurotoxicity. Also, lower scores for younger patients highlight the stronger impact of the disease and/or treatment at younger age.Copyright © 2016 John Wiley & Sons, Ltd.
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Desarrollo Infantil , Pruebas de Inteligencia , Inteligencia , Leucemia-Linfoma Linfoblástico de Células Precursoras/fisiopatología , Adolescente , Niño , Preescolar , Cognición , Estudios Transversales , Femenino , Humanos , Estudios Longitudinales , Masculino , Escalas de WechslerRESUMEN
OBJECTIVE: Identity formation was investigated in adolescent and emerging adult cancer survivors from a (neo-)Eriksonian perspective by comparing survivors to control participants. In survivors, associations between identity and clinical/demographical variables and general and illness-specific functioning were investigated. DESIGN: Childhood cancer survivors (n = 125; Mage: 19.54; 47% male) were matched on age and gender with healthy controls (2:1). MAIN OUTCOME MEASURES: All participants completed identity questionnaires. Survivors reported on demographics, well-being (depressive symptoms, life satisfaction, physical functioning), and illness-specific experiences (PTSS, illness centrality, cancer self-identity, benefit finding, cancer-related worries). Medical records provided clinical information. RESULTS: Survivors did not differ from controls on identity synthesis or confusion or on the identity statuses resulting from cluster analysis on the identity dimensions (achievement, foreclosure, moratorium, diffusion). Identity synthesis related to better well-being and illness experiences, whereas confusion related to worse well-being and illness experiences. Youth in moratorium and diffusion reported lower well-being and more negative illness experiences. Associations between identity and demographical and clinical characteristics were inconsistent. CONCLUSIONS: This study revealed no significant differences in identity formation between cancer survivors and controls. However, survivors who struggle in their identity quest should be identified as they are at risk for poorer well-being and negative illness experiences.
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Supervivientes de Cáncer , Neoplasias , Humanos , Adulto , Masculino , Adolescente , Niño , Femenino , Autoimagen , Funcionamiento Psicosocial , Encuestas y Cuestionarios , AnsiedadRESUMEN
OBJECTIVE: The long-term psychological effects of childhood cancer vary, with childhood cancer survivors reporting depressive symptoms, fear of cancer recurrence, and benefit finding. As cancer is considered a family disease, investigating the parental context may provide insight into such individual differences in psychological functioning of survivors. This study examined the directionality of effects among parental sense of incompetence, parenting dimensions (responsiveness, psychological control, and overprotection), and survivor psychological functioning (depressive symptoms, fear of cancer recurrence, and benefit finding). METHOD: This three-wave longitudinal study (covering 2 years) included 125 Dutch-speaking childhood cancer survivors (ages 14-24, 95.2% diagnosed < 18 years, and time since diagnosis 2-22 years), 114 mothers, and 91 fathers. Survivors reported (SR) about their psychological functioning and perceived parenting. Mothers reported (MR) and fathers reported (FR) about parenting and sense of incompetence. Cross-lagged panel models were estimated for each informant's perspective on parenting separately. RESULTS: Different relations were obtained for each informant. Primarily unidirectional relations were found from parental sense of incompetence to maladaptive parenting (psychological control across informants and maternal overprotection SR) and from parenting to survivor functioning. Maternal and paternal responsiveness SR positively predicted survivors' benefit finding and negatively predicted survivors' depressive symptoms, respectively. Responsiveness MR and overprotection MR positively predicted survivors' fear of cancer recurrence and depressive symptoms, respectively. One consistent reverse pathway emerged: maternal and paternal responsiveness SR negatively predicted maternal and paternal sense of incompetence, respectively. CONCLUSION: The results support parent-driven processes impacting survivors' psychological functioning and stress the need to focus on multiple perspectives when investigating family dynamics. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Supervivientes de Cáncer , Neoplasias , Femenino , Humanos , Niño , Masculino , Estudios Longitudinales , Relaciones Padres-Hijo , Neoplasias/psicología , Padres/psicología , Responsabilidad Parental/psicología , Madres , PadreRESUMEN
When parents are confronted with something as fundamental as a cancer diagnosis for their child, it is generally assumed that sharing the emotional impact of it, in the form of talking about it with the partner, is helpful and necessary to cope as an individual and a couple. However, couple communication in the context of childhood oncology is often challenging. In this qualitative research, we aimed for a better understanding of how partners experience their couple communication during treatment of their child. Thematic coding was done on in-depth interviews with 16 parents (7 couples interviewed together and 2 mothers). We found that the circumstances of the treatment period affected couple communication. In the interviews, parents provided three main meanings to their limited talking: (a) because of the hospital and treatment context; (b) for self-care/self-protection related to the value of blocking emotions; and (c) because of each other. These findings invite us to rethink emotional closeness being equated with frequent or intense emotional communication in couples with a child who has cancer. This research, framed in a dialectic approach, emphasizes the value of both talking and not talking in the tense and challenging couple situation of dealing with a child's cancer diagnosis and treatment. Rather than advocating for the general promotion of open communication, our study suggests the value of hesitations to talk at certain points in the process, while also taking into account the degree of marital difficulties in offering interventions aimed at improving couple communication.
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Adaptación Psicológica , Comunicación , Emociones , Relaciones Interpersonales , Neoplasias/psicología , Padres/psicología , Estrés Psicológico , Adolescente , Adulto , Bélgica , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Investigación CualitativaRESUMEN
OBJECTIVES: Childhood cancer is a life-threatening disease that poses significant challenges to the life of the diagnosed child and his/her family members. Based on the ABCX-model, the aim of the current study was to explore the association between family functioning, cancer appraisal and the individual adjustment of patients, parents and siblings. METHODS: Participants were 60 children with leukemia or non-Hodgkin lymphoma, 172 parents and 78 siblings (115 families). Time since diagnosis varied from zero to 33 months. Patients, parents and siblings completed the Family Environment Scale (FES), Perceived Stress Scale, Situation-Specific Emotional Reactions Questionnaire and Pediatric Quality of Life Inventory/Maudsley Marital Questionnaire. RESULTS: Family functioning and the appraisal of the cancer diagnosis proved to be related to patients', parents' and siblings' cancer-related emotions and quality of life post-diagnosis. In addition, family members differed in their perception of some family functioning domains, the appraisal of the cancer diagnosis, positive feelings and quality of life. DISCUSSION: Our findings led to the conclusion that family functioning and the appraisal of the cancer diagnosis are important for the individual adjustment of patients, parents and siblings when facing a diagnosis of cancer in the child. Differences across members within one family and differences between families speak to the need of screening all family members and intervening at the level of individual as well as the family unit.
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To assess Belgian siblings' self-reported quality of life (QoL) and the impact of illness on four different paediatric illnesses. Healthy siblings (n = 131) of children with type 1 diabetes, cancer, congenital heart disease (CHD) and cystic fibrosis (CF) completed the Child Health Questionnaire and the Sibling Perception Questionnaire. Results were compared to those of a matched group of siblings of healthy children. Siblings reported a good QoL, similar to controls, with the exception that siblings reported better on the QoL domain pain (p < .01). QoL was not related to time since diagnosis but the impact of illness was higher nearer to the time of diagnosis (r = -.39, p < .001). QoL of siblings of children with CHD or cancer was lower than QoL in the CF or type 1 diabetes group whilst impact of illness was highest for the CHD group. QoL of siblings of a child with a chronic illness is similar to the QoL of peers. Studies investigating siblings' QoL or the impact of illness on siblings should include the day-to-day demands of the illness as well as less obvious illness-related issues like 'hidden stress' and 'sense of control'.