Coping Interventions for Parents of Children Newly Diagnosed with Cancer: An Evidence Review with Implications for Clinical

Practice and Future Research

Gloanna Peek, MSN, CPNP, RN; Bernadette Mazurek Melnyk, PhD, RN, CPNP/NPP, FNAP, FAAN Authors and Disclosures Posted: 01/09/2011; Pediatr Nurs. 2010;36(6):306-313. 2010 Jannetti Publications, Inc. http://www.medscape.com/viewarticle/734671

Abstract and Introduction

Abstract
There are approximately 12,000 children diagnosed with cancer every year in the U.S. The diagnosis of childhood cancer has an impact on the entire family. Parents of children newly diagnosed with cancer often exhibit symptoms of stress, depression, and anxiety. In addition, children diagnosed with cancer often exhibit behavioral changes during and after treatment. Although numerous studies have demonstrated the adverse impact of the cancer diagnosis on the parents and children, few studies have been conducted on interventions designed to facilitate parental coping and mental health outcomes. The purpose of this evidence review was to determine the impact of psychosocial interventions on the mental health/coping outcomes of parents of children diagnosed with cancer. A synthesis of the current literature from the search demonstrates an urgent need for larger, theory-based, randomized controlled trials with attention control groups for parents of children newly diagnosed with cancer to improve their children's coping/mental health outcomes as well as their own.

Introduction
There are approximately 12,000 children diagnosed with cancer every year in the U.S. The diagnosis of cancer is a traumatic experience for both the family and the child. The psychological sequelae of childhood cancer in parents and children has been well documented and includes post-traumatic stress symptoms, depression, and anxiety (Kazak, 2005). Childhood cancer involves the whole family: the diagnosed child, the parents, and the siblings. Findings from research have indicated parental stress has a negative impact on the child's social, emotional, and behavioral adjustment to the diagnosis and treatment of cancer, as well as the parents' participation and compliance with their child's complex health care needs (Melnyk et al., 2004; Streisand, Braniecki, Tercyak, & Kazak, 2001). Therefore, using psychological interventions to decrease parental stress, depression, and anxiety is important to enhance outcomes in children with cancer. The diagnosis of cancer causes a great of deal of disruption in the family, which can be manifested as parental role confusion as well as parental distress about the child's future. In addition, parents of children newly diagnosed with cancer must cope with their own reaction to their child's diagnosis, as well as their

child's reaction (Patterson, Holm, & Gurney, 2004). Parents may have feelings of anger, guilt, fear, and grief. The parents' ability to cope with these feelings has an impact on their mental health outcomes. Numerous studies have demonstrated children diagnosed with cancer often have long-term quality-of-life issues, as well as feelings of stress that continue after the conclusion of treatment. Children, like their parents, may experience feelings of fear, anger, guilt, and grief, which can be manifested in behavioral problems and long-term adjustment issues. The child's adjustment to his or her diagnosis and treatment is strongly correlated to the parents' adjustment to the diagnosis and treatment (Ljungman et al., 2003).

The PICO Question

The purpose of this evidence review was to determine the impact of psychosocial interventions on parent mental health/coping outcomes. A PICO (P = Patient population; I = Intervention of interest; C = Comparative intervention; O = Outcome) question was developed to facilitate the literature search (Melnyk & Fineout-Overholt, 2005). The PICO question was, "In parents of children newly diagnosed with cancer (P), how do psychosocial interventions (I) versus no psychosocial interventions (C) affect parent mental health/coping outcomes (O)?"

Search for the Evidence

The databases Medline, CINAHL, Cochrane, and Psych Info were searched to identify psychosocial interventions for parents of children with cancer. The keywords used from the PICO question in the search process were parents, childhood cancer, and interventions. The search was limited to the English language. This search yielded a total of 12 articles describing interventions for parents of children diagnosed with cancer. Four articles were obtained from CINAHL, one article from Cochrane, four articles from Psych Info, and three articles from Medline.

Presentation and Critical Appraisal of the Evidence

A total of 11 intervention studies and one meta-analysis for interventions for parents of children with cancer were found, with one article specifically focused on psychological interventions for parents with children undergoing bone marrow transplant (see Table 1). Seven studies were randomized controlled trials, two were quasi-experiments, two were pre-experiments, and one was a metaanalysis of psychological interventions for children with cancer and their parents. Five studies were conducted in university hospitals in the U.S. One study was conducted in Iceland, one study in Malaysia, one study in Israel, and one study in the Netherlands. Two studies were conducted as a joint study in five hospitals in the U.S. and one hospital in Israel. Two studies included only mothers in the intervention (one pilot study and one replication study), eight studies included fathers and mothers, and two studies included parents and adolescent survivors of cancer (one pilot study and one replication study). There were a variety of interventions, including a Webdesigned intervention, a guided written disclosure, and a series of in-person support sessions that included all-day workshops. Interventions ranged from one instructional session to eight educational sessions, with only one intervention specifically including booster interventions in the study's design (Stehl et al., 2009). Timing of the interventions ranged from within the first month of diagnosis to one year after completion of treatment, with follow-up measurements ranging from 21 days to nine months.

Although the majority of interventions focused on parents of newly diagnosed children, there was no consensus on the definition of what constituted "newly diagnosed." Five studies did not define the term "newly diagnosed," while six studies defined newly diagnosed as two months from diagnosis. All childhood cancer diagnoses (such as Hodgkin's and leukemia) were included in the intervention, with the only exclusion criteria being terminal diagnosis and secondary cancer diagnosis. Additionally, the age criteria for the children in the studies ranged from 0 to 17 years of age in two studies, less than 18 years of age in one study, 2 to 16 years of age in one study, 10 to 17 years of age in one study, 11 to 19 years of age in one study, and no mention of age in five studies. Several studies reviewed were limited by their small sample sizes and the homogeneousness of the sample, which limits their external validity (the ability to generalize the findings from the sample to the greater population). Another limitation was only three studies included a theoretical framework, which limits interpretation of the findings. In addition, interventions in many studies were delivered by mental health providers, which may be a limitation in many institutions where these providers are not readily available. Another major limitation in the studies is that fidelity of interventions was not routinely assessed, and manipulation checks were not implemented to assure parents were processing the content of the interventions. In addition, mediating variables were not measured to explain the process through which the interventions worked to impact outcomes. Child outcomes were also not measured in the studies to determine if a reduction in parent adverse outcomes had a positive effect on the children. Although each intervention study had limitations, all documented a reduction in at least one negative outcome in parents of children with cancer who had received a psychosocial intervention (see Table 2). In addition, each study provides and supports the development of future psychosocial interventions.

Implications for Clinical Practice and Future Research

Although there are currently no widely used psychosocial interventions for parents of children with cancer, there is a body of evidence to guide clinicians who work with them. Clinicians currently have tools to assess parent stress, anxiety, depressive symptoms, and the need for psychosocial interventions. Findings from the majority of the studies reviewed indicated giving parents some type of psychological intervention improved their outcomes. These psychosocial interventions included allowing time for parents to express their feelings, as well as stress reduction and coping strategies, which included recognizing and validating parents' feelings of anxiety, depression, and stress. Therefore, clinicians should routinely incorporate these strategies with parents of children newly diagnosed with cancer. This evidence review suggests clinicians should begin psychosocial interventions within 2 to 16 weeks after diagnosis, with booster interventions to improve coping outcomes. Booster interventions included reviewing the impact of the diagnosis on the child's behavior and parental role (Stehl et al., 2009). In addition, booster interventions are useful in strengthening intervention effects and reinforcing expected outcomes. Childhood cancer becomes a diagnosis that has an impact on the entire family; thus, interventions focused on facilitating parental coping will have a positive impact on the entire family. Future intervention studies with parents of patients newly diagnosed with cancer should include full-scale, randomized clinical trials that measure mediating variables so explanations of mechanisms through which the interventions work can be determined. In addition, moderating variables should be measured to determine under what conditions interventions work best (for example, parents in two parent families, parents with high stress levels). Further, there is a need to study the long-term outcomes associated with interventions beyond nine months to determine sustainability of intervention effects. In addition, future

studies should also incorporate the measurement of child outcomes. Although the current evidence identifies vast differences in the timing of interventions from 24 hours after diagnosis until one year postchemotherapy, future studies should focus on delivering interventions within the first two months of diagnosis to allay adverse outcomes early and to provide a foundation for booster interventions. It should be noted that none of the intervention studies addressed the change in parental role in childhood cancer. In addition, no interventions were designed to prepare parents for what to expect in their children's responses to the diagnosis of childhood cancer or how parents can help the child cope with the diagnosis. Although not specifically designed for parents of patients newly diagnosed with cancer, one wellresearched program that enhances parental mental health/coping outcomes and does not require a mental health provider to deliver it is the Creating Opportunities for Parent Empowerment (COPE) program, a theory-based manualized intervention program shown to reduce shortand long-term stress, anxiety, and post-traumatic stress disorder symptoms in parents of critically ill and hospitalized children (Melnyk, 1994; Melnyk et al., 2004; Melnyk, Alpert-Gillis, Hensel, Cable-Billing, & Rubenstein,1997). Based on self-regulation and control theories, the COPE program is an educational-behavioral skillsbuilding program for parents that prepares them for what to expect in their child's and their own adjustment to the hospitalization and critical illness, and how to best help their children adapt to the stressful experience. Findings from three full-scale, randomized controlled trials using COPE indicated parents who received COPE versus those who received attention-control programs reported significantly less parental stress, depression, anxiety, and fewer posttraumatic stress symptoms during and up to 12 months following hospitalization (Melnyk et al., 1997, 2004). Additionally, children of parents who received the COPE program had fewer internalizing and externalizing behavior problems 12 months following hospitalization than children of parents who received an attention-control program. Therefore, it is plausible that COPE adapted for parents of children newly diagnosed with cancer could also produce similar positive outcomes.

Conclusion
Based on this evidence review, few published studies on interventions to decrease anxiety, depressive and posttraumatic stress symptoms, and improve coping/mental health outcomes in parents of children with cancer are available. The few published studies on psychosocial interventions for parents of children with cancer have been conducted with very small convenient samples, and most did not have attentioncontrol groups, which weakens their internal validity (the ability to say the intervention caused a change in the outcomes, not other extraneous variables). Findings from this evidence review support the urgent need for larger, theory-based, randomized controlled trials with attention-control groups for parents of children newly diagnosed with cancer to improve their children's coping/mental health outcomes as well as their own.