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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
https://doi.org/10.1007/s10826-019-01418-4
ORIGINAL PAPER
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
Abstract
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
wellbeing.
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
agata.m.salvador@gmail.com
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]. ...
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... 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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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