Resilience model for parents of children with cancer in mainland China-An exploratory study
Introduction
Although cancer occurs less frequently in children than in adults, there were still approximately 40,000 children aged 0–15 years in China diagnosed with cancer in 2015 (Chen et al., 2015). Advances in therapeutics have increased the survival rate for many childhood cancers, however, these diseases are still second to only accidents as the cause of death in children aged 5–14 years (Chen et al., 2015). When a child is diagnosed with cancer, the entire family is dramatically affected both physically and psychologically. There is a huge burden placed on the shoulders of the parents in terms of cancer treatment. In addition, the parents experience the constant fear of losing their child, as well as other negative emotions, such as disbelief, depression, anxiety, hope and shock (Jones, 2006). Identifying factors that are potentially protective in parents of children with cancer will aid in tailoring interventions to improve their psychological well-being (Costain et al., 1993). One such factor that may help with coping is psychological resilience (Jacobsen and Wagner, 2012), which is the capacity to resist negative psychological responses when encountering a potentially traumatic circumstance. In 2001, the Committee on Future Directions for Behavioral Health and Social Science Research at the National Institutes of Health urged for an increase in research on factors with health benefits. Specifically, the Committee recommended investigations to advance knowledge on resilience in the face of adversity (Singer and Ryff, 2001) with a particular emphasis on studies on resources that positively influence resilience and quality of life. Since 2001, the resulting increase in research in this area has enhanced our understanding of resilience. This research has been primarily been through a systems perspective, examined through multilevel analysis, and focused on understanding the dynamics of how individuals adapt and change (Masten, 2007, Cicchetti and Blender, 2006, McAllister and McKinnon, 2009). Although it was initially thought of as a solely psychological variable, resilience has recently been shown to be a biological response that relies upon plasticity in the reward and fear circuits in the brain (Bergstrom, 2007, Feder et al., 2009). Along these lines, 11 possible neurological mediators of resilience in response to extreme stress have been identified to date (Charney, 2004). Model evaluation is a stepwise process of testing and refining alternative exploratory models (Bollen, 1989, Haase, 2004), and then using data from a different sample set to analyze and confirm the best-fitting exploratory model. The purpose of this article is to report (1) an exploratory evaluation of the Resilience Model for Parents of Children with Cancer (RMP-CC), and (2) the level of resilience and other psychosocial outcomes among parents of children with cancer. The goal is for this article to serve as a guideline for the development of clinical interventions designed specifically to promote the resilience of Chinese parents, where medical staffs can make adjustments to the RMP-CC according to setting or specialty, if necessary.
Section snippets
Framework
Resilience is characterized in terms of both protective factors (e.g. positive coping strategies, positive thoughts, social resources, and familial relationships) and risk factors (e.g. defensive coping strategies, emotional distress, and physical disabilities) according to Kumpfer's resilience theory (Kumpfer, 1999, Luthar and Cicchetti, 2000). The protective and risk factors interplay and interact, where a balance of more protective factors than risk factors often leads to resilient
Participants and procedures
A consecutive sample of participants was recruited by a research group from a specialist cancer hospital in Southeast China between September 2013 and December 2014. Participants were included if they were (1) parents with children diagnosed with cancer, (2) parents that can read and write in Chinese, (3) parents fluent in oral Mandarin or Cantonese, and (4) parents with children receiving treatment and the treatment lasted for less than 1 year. Only one parent was included in the study if both
Sample characteristics
A description and summary of the characteristics of the parents and children are presented in Table 2, Table 3, respectively. The mothers were younger (X2 = 4.6039, P = 0.0319), had a higher level of education (X2 = 10.0441, P = 0.0015), were more likely to be married (X2 = 8.1779, P = 0.0042) and had a higher rate of unemployment (X2 = 6.4693, P = 0.011) than the fathers, and there were no statistically significant differences found between mothers and fathers in other demographics. Among the
Discussion
Based on the meeting of the criteria for goodness of fit of several indices, the final exploratory SEM was a reasonable, although not perfect, approximation of the data and explained a high level of the variance (58%) for the separate distal outcomes of resilience. In addition, the logistic regression revealed the two demographic factors of education level and clinical classification of cancer that accounted for 12% of the variance of resilience. Thus, these findings suggest that confirmation
Limitations
The findings from the present study must be interpreted in the context of its limitations. First, the response rates were based on the number of families who expressed an interest in participating in the study rather than the number of families who were notified of the study. This may lead to biased results because volunteers generally have healthier psychosocial states. In addition, information about non-responders was not collected, and it is unknown whether families participated because they
Implications
Many of the recent studies conducted have focused on medical concerns, while this study emphasized the role of positive health-based perspectives to psychosocial outcomes among Chinese parents who have a child with cancer. As depicted in the model of RPM-CC, reducing parental levels of depression, anxiety, and uncertainty in illness, increasing the social support, and encouraging parents to use more courageous coping strategies are important for promoting parental resilience. This article has
Conclusions
Although resilience was initially thought of as purely psychological, it has gradually become a reliable psychosocial indictor used in a wide range of clinical settings in the western world. Despite the potential of resilience as a means by which to evaluate psychological responses to difficult life situations, it is still a relatively new topic in most eastern countries. We have a limited understanding of how resilience contributes to the psychosocial outcomes of Chinese parents. More research
Financial disclosures
The authors have no financial disclosures or conflicts of interest to make.
This manuscript has been thoroughly edited by two native English writers from an editing company. Editing Certificate will be provided upon request.
References (53)
- et al.
A comparison of stress and coping by fathers of adolescents with mental retardation and fathers of adolescents without mental retardation
Res. Dev. Disabil.
(1991) - et al.
The importance of teaching and learning resilience in the health disciplines:a critical review of the literature
Nurse Educ. Today
(2009) - et al.
Immune consequences of the spontaneous pro-inflammatory status in depressed elderly patients
Brain Behav. Immun.
(2004) A rating instrument for anxiety disorders
Psychosomatics
(1971)- et al.
Influence of caregiving on lifestyle and psychosocial risk factors among family members of patients hospitalized with cardiovascular disease
J. General Intern. Med.
(2009) Comparative fit indexes in structural models
Psychol. Bull.
(1990)Structural Equation Modeling with AMOS: Basic Concepts, Applications, and Programming
(2001)Structural Equations with Latent variables
(1989)Molecular pathways associated with stress resilience and drug resistance in the chronic mild stress rat model of depression - a gene expression study
J. Mol. Neurosci.
(2007)- et al.
Predictors of depressive symptoms in caregivers of patients with heart failure
J. Cardiovasc. Nurs.
(2010)
Comparison of function-based model and a meaning-based model of quality of life in oncology: multidimensionality examined
J. Psychosoc. Oncol.
Psychobiological mechanisms of resilience and vulnerability: implications for successful adaptation to extreme stress
Focus
Analysis on morbidity and mortality of malignant tumor in China in 2011
Chin. Cancer
A multiple-levels-of-analysis perspective on resilience: implications for the developing brain, neural plasticity, and preventive interventions
Ann. N. Y. Acad. Sci.
Implications of cancer for school attendance and behavior
Med. Pediatr. Oncol.
Psychobiology and molecular genetics of resilience
Nat. Rev. Neurosci.
Social outcomes in the childhood cancer survivor study cohort
J. Clin. Oncol.
Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers
Can. Med. Assoc. J.
Resilience predicting psychiatric symptoms: a prospective study of protective factors and their role in adjustment to stressful life events
Clin. Psychol. Psychother.
Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives
Struct. Equat Model
The adolescent resilience model as a guide to interventions
J. Pediatr. Oncol. Nurs.
Hierarchical latent variable models in PLS-SEM: guidelines for using reflective-formative type models
Long. Range Plan.
Caregivers of children with cancer
J. Hum. Behav. Socl Environ.
Posttraumatic stress and posttraumatic growth in cancer survivorship: a review
Cancer J.
A new quality standard: the integration of psychosocial care into routine cancer care
J. Clin. Oncol.
Factors and processes contributing to resilience: the resilience framework
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These authors contributed equally to this work and should be considered co-first authors.