Carla Crespo

Quality of life in pediatric asthma patients and their parents: a meta-analysis on 20 years of research.

Introduction: This meta-analytic review was conducted to estimate the magnitude of quality of life (QoL) impairments in children/adolescents with asthma and their parents. Method: A systematic search in four electronic databases revealed 15 quantitative studies published between 1994–2013 that directly compared the QoL of 7- to 18-year-old asthma patients/parents to community/healthy controls. Pooled mean differences (MD) with 95% CI were estimated using the inverse-variance random-effects method. Results: Pediatric asthma patients (n = 1797) presented lower overall QoL (MD = -7.48, CI: -10.67/-4.29), physical functioning (MD = -9.36, CI: -11.85/-6.86), psychological functioning (MD = -5.00, CI: -7.17/-2.82) and social functioning (MD = -3.76, CI: -5.80/-1.72), compared to controls (n = 13,266). For parents (666 cases and 7328 controls), asthma was associated with lower physical functioning (MD = -10.15, CI: -12.21/-8.08). Between-studies heterogeneity was explained by type of informant and selection of controls. Conclusion: The ascertainment of the magnitude of QoL impairments and the most affected QoL dimensions for pediatric asthma patients/parents may contribute to the outlining of realistic goals for multidisciplinary interventions in healthcare settings and evaluate its cost–effectiveness.

Mapping the caregiving process in paediatric asthma: Parental burden, acceptance and denial coping strategies and quality of life.

Based on a multidimensional model of the caregiving process, the main goal of this study was to examine the direct and indirect links, via acceptance and denial coping, between the caregiving burden and the quality of life (QoL) in parents of children with asthma. The sample was composed of 182 parents of a child/adolescent between 8 and 18 years of age with a clinical diagnosis of asthma. Data were obtained via self-report questionnaires assessing the caregiving burden, acceptance and denial coping strategies and QoL. Results from structural equation modelling indicated a good fit for the mediation model, which explained 30% of the variability of the parents’ QoL. Higher levels of caregiving burden were negatively and indirectly associated with the parents’ QoL, via less use of acceptance and greater use of denial coping strategies. Multigroup analyses ascertained the invariance of these links across the children’s asthma severity, age and socio-economic groups. These findings emphasise acceptance and denial as important coping mechanisms in the caregiving process. Thus, broad-spectrum family-centred interventions in paediatric asthma settings can target the development of the parents’ coping tendencies characterised by greater acceptance and less denial as a way of reappraising caregiving demands as less burdensome and improving their QoL.

Parents' Romantic Attachment Predicts Family Ritual Meaning and Family Cohesion Among Parents and Their Children With Cancer

Objective Family functioning is associated with adaptation in pediatric illness. This study examines the role of parents’ relationships (specifically romantic attachment) as a predictor of family ritual meaning and family cohesion for parents and their children with cancer. Methods The dyads, 58 partnered Portuguese parents and their children in treatment, reported on family ritual meaning and family cohesion at Time 1 (T1) and after 6 months (T2). Parents also completed the questionnaire assessing romantic attachment at T1. Results Parents’ avoidant attachment, but not anxious attachment, predicted lower family ritual meaning and family cohesion after 6 months. T2 family ritual meaning mediated the relationship between T1 avoidant attachment and T2 family cohesion. Conclusions Parents’ avoidant attachment may have a negative effect on family functioning in parents and children. Clinical intervention to address avoidant attachment or/and to promote family ritual meaning may help strengthen family ties.

Psychometric study of the European Portuguese version of the PedsQL 3.0 Cancer Module

BackgroundHealth-related quality of life (HRQoL) is an important outcome to assess the impact of cancer. This article examines the psychometric properties of the European Portuguese self-report version of the Pediatric Quality of Life Inventory™ Cancer Module (PedsQL™ 3.0 Cancer Module) in children and adolescents with cancer.MethodsThe participants, 332 children/adolescents diagnosed with cancer (8–18 years old), completed measures to assess HRQoL (PedsQL™ 3.0 Cancer Module and DISABKIDS Chronic Generic Measure; DCGM-12) and anxiety (Revised Children’s Manifest Anxiety Scale - second edition; RCMAS-2). A subsample (n = 52) completed the PedsQL™ 3.0 Cancer Module a second time following one-week. The pediatric oncologists completed the Intensity of Treatment Rating Scale 3.0 (ITR 3.0).ResultsFor the whole sample, the PedsQL™ 3.0 Cancer Module demonstrated good item discrimination (rs = .30 to .54). The confirmatory factor analysis testing the presence of eight first-order factors loading significantly in a second-order factor revealed an acceptable fit (CFI = .91; RMSEA = .05). The correlation of PedsQL™ 3.0 Cancer Module with DCGM-12 (rs = .17 to .58), and with RCMAS-2 (rs = −.16 to–.51) attested convergent validity. This inventory demonstrated minimally acceptable to very good internal consistency (αs = .65 to .87) and temporal stability (ICCs = .61 to .81).ConclusionsThese findings demonstrate that the European Portuguese self-report version of the PedsQL™ 3.0 Cancer Module is a valid and reliable instrument for assessing HRQoL in pediatric cancer.

Family rituals in pediatric epilepsy: Links to parental competence and adaptation.

This cross-sectional study examined the associations between family ritual meaning and 3 indicators of parental adaptation (anxious and depressive symptoms and quality of life) via 2 dimensions of parental competence—satisfaction and efficacy—in parents of children with epilepsy. Two hundred Portuguese parents of children diagnosed with epilepsy for at least 6 months completed self-report measures assessing the main study variables. Our results showed that when parents reported stronger family ritual meaning, they also reported higher levels of parental satisfaction and efficacy, which were in turn were associated with lower psychological distress (anxious and depressive symptoms) and better quality of life of parents. This pattern of results was significant regardless of the severity of children’s epilepsy, age group, and family socioeconomic level. In the context of pediatric epilepsy, empirical evidence was found for the role of family ritual meaning in being directly and indirectly associated with parents’ adaptation outcomes by higher levels of parental satisfaction and efficacy. Focusing intervention targets on what families naturally do and recognize as their own ritual meaning may be a favorable route to address those at risk of psychological distress and lower quality of life.

Family rituals when children have cancer: A qualitative study.

Family rituals serve important functions for families, especially at times of change and stress, such having a child diagnosed with cancer. No studies have investigated how family rituals may be impacted during pediatric cancer treatment. This qualitative study explored the impact of pediatric cancer and its treatment on family rituals. Semistructured interviews with 19 mothers of children with cancer, ages 8–17 years old, were conducted and analyzed using grounded theory strategies. The interviews revealed two main types of changes in rituals: Loss; and Transformation. The Loss of Family Rituals included two subcategories (Nonattendance at Ongoing Family Rituals, Disruption of Family Rituals). The Transformation of Family Rituals included three subcategories (Readjustment of Family Rituals, Creation of New Family Rituals, Reestablishing Old Family Rituals). Seven general functions of family rituals were identified (Celebrating, Family Cohesion, Family Communication, Respite, Sense of Predictability, Sense of Security, Rhythm of Life) and five illness-related functions (Grounding in Life, Hope, Marking the Course of Treatment, Sense of Normalcy, Treatment Adherence). Although pediatric cancer may compromise family rituals (nonattendance and/or disruption) and their functions, families develop adaptive strategies (readjustment, creation, and/or reestablish) to transform rituals and facilitate their potentially protective functions. Discussion of rituals can be integrated into interventions to optimize family interactions in the adverse context of pediatric cancer, via the readjustment of existing rituals, the creation of new ones and the reestablishing of old rituals.

Does Hope Matter? Associations Among Self-Reported Hope, Anxiety, and Health-Related Quality of Life in Children and Adolescents with Cancer

This study aimed to examine the direct and indirect effects of hope on health-related quality of life (HRQoL) via anxiety of children/adolescents with cancer. We proposed to test if the mediation model was moderated by the child/adolescent’s treatment status. The participants were 211 children/adolescents diagnosed with cancer, divided into two clinical groups according to treatment status: 97 patients on-treatment and 114 off-treatment. Self-reported questionnaires measured the youths’ hope, anxiety, and HRQoL perceptions. The results revealed that children/adolescents on- and off-treatment only differed in levels of HRQoL, with a more compromised HRQoL found for the on-treatment group. Hope was positively associated with HRQoL, directly and indirectly via anxiety reduction. Moreover, only the association between anxiety and HRQoL was moderated by clinical group, revealing stronger associations for on-treatment patients. Findings highlight the importance of hope as a decisive resource in pediatric cancer adaptation, which may be strategically targeted in psycho-oncological interventions.

Psychometric study of the Portuguese version of the Family Distress Index (FDI).

Introduction: The current study examined the psychometric properties of the Portuguese version of the Family Distress Index (FDI). The FDI is an 8-item self-report measure that assesses family maladaptation, providing an index of family outcomes within the resiliency model of family stress, adjustment, and adaptation. Method: Participants were 459 adults, who completed measures of family distress (FDI) and family functioning (Systemic Clinical Outcome Routine Evaluation; SCORE-15). Results: Exploratory and confirmatory factor analyses supported a unidimensional factorial structure. Results also indicated that the FDI has good internal consistency and temporal stability. The positive and significant correlation between FDI and SCORE-15′ scores demonstrated its convergent validity. Through receiver operating characteristic (ROC) analysis, we determined a cut-off score of 12 for identifying probable family distress. Discussion: In sum, the Portuguese version of the FDI is a valid and reliable instrument, which can foster the development of future empirical studies focused on family adaptation in diverse contexts of adversity, namely in health care settings.

Emerging Adults Thinking About Their Future: Development of the Portuguese Version of the Hopes and Fears Questionnaire

Nowadays, emerging adults live in a context of macroeconomic uncertainty. As the major processes of one’s identity exploration currently occur in emerging adulthood, understanding how these individuals foresee their future is of special interest. The purpose of this study was 2-fold: (i) to investigate future orientation (FO) in a sample of Portuguese emerging adults and (ii) to validate the Portuguese version of the Hopes and Fears Questionnaire. Data from 332 individuals were analyzed. Results demonstrated that participants’ future hopes and fears were mainly pertaining to education, work/career, and family/marriage. Participants also reported concerns related to their financial resources. Thus, the results showed that participants’ FO reflected major tasks associated with their development stage, as well as contextual factors, such as macroeconomic trends. This study contributed to the knowledge of emerging adulthood in Portugal, simultaneously providing a useful and reliable measure to evaluate emerging adults’ FO in that country.

Family-Centered Care in Pediatric Oncology in Portugal

Objetivo: Este estudo teve como objetivo caracterizar as percecoes parentais dos Cuidados Centrados na Familia (CCF) em funcao de fatores sociodemograficos e clinicos no contexto da oncologia pediatrica em Portugal. Metodo: Participaram neste estudo 204 cuidadores de criancas com cancro acompanhadas em duas unidades de oncologia pediatrica. Os participantes forneceram dados sociodemograficos e preencheram a Medida dos Processos de Cuidados (MPOC-20), composta por duas subescalas: Servicos e Informacao Geral. Os medicos oncologistas pediatricos facultaram informacao clinica. Resultados: A idade de criancas e pais estava positivamente associada as percecoes parentais dos CCF (Servicos e Informacao Geral) como mais centrados na familia. Analises multivariadas da variância revelaram que pais de criancas (vs. adolescentes), pais que concluiram o ensino superior (vs. escolaridade igual/inferior ao 12o ano) e pais de criancas em tratamento antineoplasico (vs. fora de tratamento) percecionaram os cuidados como menos centrados na familia (Servicos e Informacao Geral). Nao se verificaram diferencas em funcao do tempo desde o diagnostico, do numero de internamentos e da intensidade do tratamento. Conclusao: Os resultados sugerem que os pais mais novos que concluiram o ensino superior, pais de criancas mais novas e a receber tratamento, poderao constituir grupos em maior risco de percecionar os cuidados de saude como menos centrados na familia.