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A Review of Supportive Care Interventions to Manage Distress in Young Children With Cancer and Parents
Robb, Sheri L. PhD, MT-BC; Hanson-Abromeit, Deanna PhD, MT-BC
Author Affiliations: School of Nursing, Indiana University, Indianapolis (Dr Robb); School of Music, University of Kansas (Dr Hanson-Abromeit).
Grant sponsors: Research in Palliative and End-of-Life Communications and Training (RESPECT) Center pilot study grant.
The authors have no conflicts of interest to disclose.
Correspondence: Sheri L. Robb, PhD, MT-BC, School of Nursing, Indiana University, 1111 Middle Drive, Indianapolis, IN 46202-5107 ( email@example.com).
Accepted for publication July 30, 2013.
There is a positive relationship between parent and young child distress during cancer treatment. Dimensions of parent/child distress are multifaceted and associated with family function and quality of life outcomes. A critical examination of intervention research is needed to identify how dimensions of parent/child distress and related outcomes are being addressed.
The aims of this study were to summarize and describe supportive care intervention research for young children with cancer and parents and to discuss implications for family-based intervention research.
This systematic review examined supportive care intervention studies with randomized and nonrandomized designs for young children with cancer (aged 3–8 years) and/or their parents published between 1991 and 2011. Twenty-two studies that met specific inclusion criteria were reviewed to determine intervention type, intervention components, targeted outcomes and findings, and whether interventions addressed child, parent, or parent/child needs.
Most interventions focused primarily on procedural support, followed by parent education/counseling. Most studies targeted the child or the parent alone; very few targeted parent/child dyads. Outcomes focused primarily on child distress, anxiety, and pain. Quality of life and coping were rarely measured, and no studies examined family function. This body of research is emerging, with most interventions in the developmental pilot phase and few efficacy trials.
Findings confirm underrepresentation of young children in supportive care intervention research and the need for more complex, family-based interventions to advance young child intervention research beyond acute, procedural distress.
Implications for Practice:
The authors discuss the implications of review findings for clinical practice.
There is a strong, positive relationship between distress experienced by young children with cancer and the distress of their parents, with young children being more vulnerable to parent distress than older children.1–5 Parent/child distress is multifaceted and associated with family function and quality of life outcomes.1,6–12 To identify how dimensions of parent/child distress and related outcomes are being addressed in young children, a critical examination of existing intervention research is needed. Therefore, the purposes of this systematic review were to summarize and describe supportive care intervention research to manage distress in young children with cancer (aged 3–8 years) and parents and to discuss implications for family-based intervention research.
Emotional distress in parents and their young child (<9 years) with cancer during acute treatment is a prevalent and persistent problem that interferes with family functioning, parent-child interaction, and quality of life.1,6–8,10–12 This acute emotional distress is also related to traumatic stress symptoms after treatment ends.2,13–17 Although some parents and young children with cancer are resilient and experience positive growth after treatment, many report problems with adjustment and traumatic stress symptoms in the moderate to severe range.2,14–18
Children younger than 9 years represented 49% of the 12 400 pediatric cancer cases reported in 2007.19 Studies estimate that as many as half of young children experience clinically significant emotional distress during acute treatment; parents describe this distress as withdrawn, quiet, and regressive behavior, accompanied by clinging, moodiness, and anger.20–22 These children also demonstrate changes in play, which is the primary indicator of child functional performance.23,24
Distress is also prevalent in parents, with up to 75% of parents experiencing heightened anxiety and depressed mood and many reporting traumatic stress symptoms during their child’s treatment.8,22,25,26 Specific symptoms include difficulty making decisions, decreased concentration, edginess, and feeling emotionally numb or detached.9 The immediate impact of parent distress symptoms includes decreases in the frequency and quality of parent-child interactions, parent confidence about their ability to support their child during treatment, overall family functioning, and quality of life.1,6–12,27–29
The positive relationship between parent and child distress observed in pediatric cancer studies is consistent with developmental research examining social referencing and emotional contagion.1–3,5,30 Given the strength of the parent/child distress relationship, common underlying processes are probable, lending empirical and theoretical support for a family-based intervention approach. Young children with cancer and their parents require supportive care interventions to manage acute treatment distress and prevent secondary psychosocial morbidity during survivorship; however, data from previous reviews suggest that young children may be underrepresented in pediatric cancer intervention research.31–34 To determine whether there is a gap in intervention research for young children with cancer and parents, we conducted a systematic review of supportive care intervention research.
The National Cancer Institute (NCI) and the Multinational Association of Supportive Care in Cancer describe supportive care as comprehensive care for individuals with cancer to prevent and manage the potential adverse physical and psychological effects of cancer treatment.35,36 Supportive care broadly addresses the minimization of symptoms and treatment, improvement of communication with healthcare providers, tolerance for treatment, and improved management of social, emotional, and psychological complexities related to a cancer diagnosis.35 The NCI recognizes that pediatric supportive care must account for a child’s age and the impact of treatment on the child’s developmental trajectory, as well as their whole family.36 Because of the broad definition of supportive care interventions and the identified relationship between parent and child shared distress, we chose to approach supportive care from a more specialized perspective in this review. Specifically, we were interested in examining whether shared parent/child distress is being addressed and, if so, what are characteristics of current interventions.
In addition to identifying and describing characteristics of intervention research for this population, we were also interested in examining the state of knowledge development to inform future research and determine whether there is an adequate body of evidence to make practice recommendations at this time. Evidence-based practice (EBP) recommendations rely on research findings from well-designed studies, coupled with patient values and preferences, and the clinician’s expertise.37 The strength and quality of research studies are often evaluated using rating systems, but it is important to note that in emerging areas of research, developmental and exploratory studies may represent most of published research, and evidence from these studies is generally considered too preliminary to inform practice and, as such, are not reflected in levels of evidence rating systems.37,38
The Medical Research Council (MRC) indicates that best practice in the development and testing of complex interventions requires a systematic approach beginning with intervention development studies, wherein investigators use the best available evidence and theory to inform intervention design.39 Although the MRC no longer uses numbers to refer to the varied phases of intervention research, these developmental studies are often referred to as phase I studies. Subsequent to developmental studies, investigators test interventions using a carefully phased approach beginning with a series of exploratory, pilot studies (ie, phase II studies) before moving on to larger efficacy and effectiveness trials (ie, phase III and phase IV studies). Phase I and II studies are essential in developing the foundational knowledge needed to support larger efficacy trials that enable researchers to draw inferences about causality and generalize findings to the larger population. It is these later phase III and IV studies that meet the criteria specified for evidence-based clinical decision making.37
To identify how dimensions of parent/child distress and related outcomes are being addressed specifically in young children with cancer, and to examine the current state of knowledge development, we critically examined intervention research where young children (aged 3–8 years) were well represented in the study sample. Specifically, the current review addressed the following research questions:
- 1. What are the types of interventions that have been tested in young children with cancer and parents?
- 2. Of those studies identified, how many address the needs of the young child with cancer alone, the needs of the parent alone, or the interrelated needs of both the parent and the child?
- 3. What is the involvement, if any, of parents in intervention studies for young children with cancer? Similarly, what is the involvement, if any, of children in interventions for parents of young children with cancer?
- 4. What outcomes have been targeted in supportive care intervention studies to manage distress in young children with cancer and parents and how were outcomes measured in young children and parents?
- 5. What is the state of knowledge development for supportive care intervention research to manage distress in young children with cancer and parents?
- 6. What are the relative strengths and limitations of supportive care intervention studies to manage distress in young children with cancer and parents?
Identification of Relevant Studies
This review examined supportive care intervention studies to manage distress in young children with cancer and parents with randomized and nonrandomized designs. On the basis of the NCI (2013) definition of supportive care and our focus on parent/child distress and related outcomes, we included intervention studies that aimed to manage symptoms, improve quality of life, and/or promote psychosocial well-being during active cancer treatment.36 In addition, we used the following inclusion and exclusion criteria to determine relevance and inclusion of studies for this review.
- 1. Published between 1991 and 2011 in a peer-reviewed journal.
- 2. Investigated a specified supportive care intervention.
- 3. Implemented with young children (ages 3–8 years inclusive) and/or their parents.
- 4. Pediatric patients undergoing active treatment for cancer.
- 5. Randomized or nonrandomized trial design.
- 6. English language.
- 1. Review articles.
- 2. Descriptive studies/articles.
- 3. Studies that included both younger and older children with mean age of younger than 3 years or 9 years or older.
The authors searched PsycINFO, MEDLINE, HealthSTAR, and CINAHL databases. Search terms included the following: child or children (search limited for age range parameters), cancer or neoplasms, intervention or intervention studies, anxiety, pain, psychosocial, family support, coping, quality of life, distress, emotional, affect, and mood. As illustrated in the Figure, this search yielded 62 studies. After reviewing all abstracts, only 26 met eligibility criteria. Each of these 26 articles was read to determine eligibility for inclusion, with 22 being included in the final review. Articles that were excluded targeted predominantly older children (eg, sample mean age ≥9 years, n = 27), patients not in active treatment (n = 4), patients without cancer or mixed diagnoses (n = 3), had no intervention (n = 3), was not a supportive care intervention (n = 1), was not in English (n = 1), or was a duplicate publication (n = 1).
A table for coding was created based on our study questions and summarized 9 categorical/descriptive aspects of each study: (1) intervention type, (2) study design, (3) sample characteristics/intervention setting, (4) intervention and control conditions, (5) intervention recipient and level of parent/child involvement, (6) outcomes and measures, (7) results, (8) characterization of the study as phase I/II (developmental, feasibility, pilot) or phase III (evaluation) based on MRC definitions,39 and (9) study strengths/limitations (Table 1). The authors independently read each article and extracted information for the review. The information was placed into table format and discrepancies were resolved through consensus.
We identified 22 studies for review; these included 16 randomized trials and 6 nonrandomized studies. As described in the previous section, Table 1 summarizes the categorical/descriptive aspects of each study. Below, we summarize the results for each research question.
What Are the Types of Interventions That Have Been Tested in Young Children With Cancer and Parents?
Table 1 summarizes intervention content, with studies grouped based on intervention type. On the basis of the purpose statements of the reviewed studies, we identified 3 intervention types, which included procedural support (n = 12),4,40–50 education/counseling (n = 8),51–58 and distress/symptom management (n = 2).59,60 Procedural support interventions were designed to address distress associated with 3 specific diagnostic/treatment procedures: radiation therapy, venipunctures or implanted venous access device access, and bone marrow aspirations or lumbar punctures. The theoretical bases for the reviewed procedural support interventions were rarely specified; however, most (8 studies) appeared to be grounded in distraction or attention regulation theory and used developmentally appropriate, interactive play activities during the specified procedure. Three additional studies examined hypnosis interventions, and 1 used a positioning pillow during lumbar punctures.
Education and counseling interventions focused on developing skills and acquiring knowledge for successful school reintegration, problem solving during active treatment, social skills training, diagnosis/symptom management, and self-care. Theoretical bases for these education/counseling interventions were frequently specified, with most interventions based on self-regulation theory or cognitive-behavioral therapy.
Distress/symptom management interventions were designed to address general distress related to inpatient hospitalization. Theoretical bases for these 2 interventions were either explicitly or implicitly stated; 1 study used music-based play to support child self-regulation and the other study used yoga to structure breathing and diminish anxious thought through meditation.
Of the 8 distraction-based procedural support interventions, 6 included children as young as 2 years, with a mean age of about 4.5 years. These interventions used interactive play activities appropriate for younger children, with several studies providing varied play materials based on age. The music-based play distress management intervention also included younger children ages 4 to 7 years and used developmental theory to inform specified play-based intervention activities. Interventions that required more advanced cognitive skills, such as hypnosis, music CD creation, and social skills training interventions, included children as young as 5 years, with a mean age of about 8 years.
Of Those Studies Identified, How Many Address the Needs of the Young Child With Cancer Alone, the Needs of the Parent Alone, or the Interrelated Needs of Both the Parent and the Child?
Table 2 further summarizes the intervention recipient information presented in Table 1, indicating whether the interventions were delivered to and targeted the needs of the child with cancer alone (ie, targeted child), the parent alone (ie, targeted parent), or both the parent and the child (ie, targeted parent/child dyad). Most of the reviewed studies (n = 11) targeted the child, and of those, most were procedural support interventions (n = 8), followed by distress management (n = 2) and education/counseling (n = 1). All parent-targeted interventions (n = 7) fell under the education/counseling category, and all interventions targeted to the parent/child dyad (n = 4) were procedural support interventions.
What Is the Involvement, if Any, of Parents in Intervention Studies for Young Children With Cancer?
Table 2 also summarizes the level of parent involvement in child- and parent-targeted interventions. All of the child-targeted studies indicated some level of parent involvement; however, most (82%) indicated parent presence only with no direct, intentional involvement of the parent as part of the intervention. The exception was a child-targeted social skills training intervention wherein parents participated in the initial session, viewed a social skills videotape, and were encouraged to support their child’s efforts to use newly learned skills. Only 1 parent-targeted intervention involved the child—a school reintegration intervention wherein the child participated in the initial session; all subsequent sessions involved parents meeting with a trained family advocate.
What Outcomes Have Been Targeted in Supportive Care Intervention Studies to Manage Distress in Young Children With Cancer and Parents and How Were Outcomes Measured?
Table 1 lists specific outcome measures for each study. Table 3 summarizes the categorical child and parent outcomes measured in the reviewed studies, along with the type of measure (ie, questionnaire, behavioral observation, physiological) and the person completing the questionnaires (ie, self-report, parent report, nurse report). Child outcomes were measured using questionnaires where the informant was the child (ie, child self-report), the parent (ie, parent report), or the nurse (ie, nurse report). Child outcomes were also measured using observational data collected using behavioral checklists and/or time-sampling procedures completed by a trained observer, as well as physiological data including heart rate and sedation scores. The child outcomes most frequently measured included distress (n = 12), anxiety (n = 7), and pain (n = 6). This is consistent with findings that most of the reviewed studies focused on procedural support. The use of child self-report, parent report, and observational outcomes were equally represented, which is consistent with recommendations that researchers use varied data sources when conducting research with young children because of concerns about the reliability/validity of self-report measures in children younger than 5 years. Of the studies reviewed, only 7 included children younger than 5 years, and none of these used child self-report measures. Instead, these 7 studies examined child outcomes using data sources that included parent report (n = 3), nurse report (n = 3), behavioral observation (n = 6), physiological measures (n = 1), or success of the procedure (n = 1). Of those 7 studies, the number of data sources used in a single study was 3 sources (n = 2), 2 sources (n = 3), and 1 source (n = 2).
All parent outcomes were measured using self-report questionnaires, with the most frequently measured outcomes including anxiety (n = 7), followed by depression, mood, posttraumatic stress symptoms, and problem-solving skills (all n = 3). Quality of life and coping for parent or child were rarely measured, and none of the studies reviewed examined family function.
What Is the State of Knowledge Development for Supportive Care Intervention Research to Manage Distress in Young Children With Cancer and Parents?
Based on MRC definitions, each reviewed study was characterized as a phase I/II developmental and/or feasibility/pilot study or a phase III efficacy study (see Table 1). Most of the reviewed studies (n = 20; 91%) were phase I/II developmental and/or exploratory pilot studies, and the remaining 2 studies (Marec-Berard et al, 2009, and Sahler et al, 2005) were phase III efficacy trials. As stated in the “Introduction,” the purpose of phase I/II studies is to provide the theoretical and methodological foundation for larger, subsequent trials to test intervention efficacy. Unfortunately, a large portion of these developmental/exploratory studies did not explicitly discuss an underlying theoretical framework (implicit, n = 10; none specified, n = 4), and only about half (n = 11) described specific strategies to ensure treatment fidelity. Of the 2 phase III trials, both provided either a theoretical framework or intervention rationale, but only Sahler and colleagues,54 specified treatment fidelity strategies that are used to assess, monitor, and enhance the reliability and validity of behavioral interventions under investigation.61
What Are the Relative Strengths and Limitations of Supportive Care Intervention Research for Young Children With Cancer and Parents?
We identified a total of 22 randomized and nonrandomized design studies that have examined supportive care interventions to manage distress in young children with cancer and parents. Of these studies, 16 were randomized trials, 3 were quasi-experimental, and 3 were nonexperimental. Of the 16 randomized trials, half had small sample sizes that ranged from 5 to 17 participants per group; the remaining studies had larger samples that ranged from 40 to 215 participants per group. Two of the studies reviewed did not analyze clinical outcomes for the child or parent (see Table 1, Dahlquist et al, 2005, and Manne et al, 1994). Of the 20 studies that did examine clinical outcomes, 12 had positive findings and examined procedural support (n = 6), education/counseling (n = 5), and distress management (n = 1) interventions.
Positive findings for procedural support interventions included distraction (n = 3)42–44 and hypnosis-based (n = 3)47–49 interventions; however, generalization of these findings is limited by the small sample size. In addition, all of the hypnosis and several of the distraction-based intervention studies were conducted by the same investigators. Replication of positive findings in larger trials by multiple investigative teams will strengthen the body of evidence for these interventions.62
Of the 8 reviewed education/counseling interventions, 5 had positive findings.52,54,55,57,58 Overall, these studies used more rigorous study designs, had larger study samples, and had a clear theoretical foundation for the proposed intervention. Of the 5 studies, 3 focused on the development and testing of the Problem-Solving Skills Training intervention developed by Sahler and colleagues52,54,55 and provide strong evidence to support the intervention. Replication of positive findings by different investigators would further strengthen evidence of this intervention as an empirically supported therapy for young children with cancer and parents.62
Only 1 of the 2 emotional distress interventions had positive findings; these must be considered preliminary because of study design, small sample, and absence of additional and more robust outcome measures. Despite limitations, the studies reviewed provide important preliminary data regarding feasibility and refinement of the interventions under investigation.
Our review findings confirm that young children are underrepresented in supportive care intervention research and that family-based interventions to manage distress in young children and their parents are limited. Interventions that include young children have focused primarily on procedural support, with little attention given to managing general distress or improving family function during acute cancer treatment. Although several education/counseling interventions have directly addressed parent distress, residual effects from these interventions on the family system have not yet been examined. In the following discussion, we summarize the current state of young child supportive care intervention research and identify ways we can improve and broaden the scope of research.
The current state of intervention research addressing shared distress of parents/young children with cancer is still in the early stages of development and pilot testing. Most of the identified studies were exploratory and not adequately powered to examine intervention efficacy. Thus, although evidence for interventions is emerging, it is premature to generalize preliminary findings to practice and difficult to assign an EBP rating to these studies because most used a randomized control trial design but were frequently underpowered or lacked the design rigor needed to meet EBP rating system definitions for evidence obtained from a well-designed randomized control trial.37 An area where this body of research needs to be strengthened is the use of theoretical frameworks to guide intervention design and evaluation. Intervention research that is grounded in relevant theory is more likely to result in an effective intervention than those taking a purely empirical approach.39 Unfortunately, many of the identified pilot studies did not specify a theoretical framework to guide the identification of intervention content, potential covariates (eg, parent gender, child educational experiences, prior hospitalizations and/or procedures), potential mediators (eg, parent self-efficacy, parent/child cancer knowledge), and outcomes.
In 2004, the National Institutes of Health Behavior Change Consortium published best practices and recommendations to enhance treatment fidelity in behavioral intervention studies.61 Treatment fidelity includes a variety of methodological strategies that enhance reliable and consistent behavioral intervention delivery during clinical trials. The primary goal of treatment fidelity is to increase scientific confidence that changes in targeted outcomes are caused by the intervention under investigation and not by other unknown factors. Treatment fidelity strategies were specified in about half of the reviewed studies, regardless of publication year. We expected that studies published after 2004 would more frequently report fidelity strategies, but 62% of those studies not reporting fidelity strategies were published between 2007 and 2010. It is important to acknowledge that publications illustrating the application of specific treatment fidelity strategies have become more prevalent in the last 5 years and is expected to help improve reporting over time.63–66
Our review indicates that to date, empirical intervention research targeting both the parent and the child has occurred only in the area of procedural support. This research has provided good evidence for using distraction-based interventions, with parents as coaches, to reduce the distress experienced by both parents and young children during invasive medical procedures. Unfortunately, there is an absence of family-based, supportive care interventions that aim to manage generalized distress and improve family function and quality of life during the acute phase of treatment, which may prevent longer-term problems of traumatic stress and behavioral adjustment in survivorship.2,12–17
Measuring outcomes in young children can be challenging and has likely contributed to the exclusion of young children, especially those younger than 6 years, from a wider range of intervention research. Behavioral observation of acute distress is a reliable way to measure outcomes in younger children, making their inclusion in procedural support research easier. Child self-report measures generally have a lower age limit of 5 to 6 years,67,68 and versions for different age groups are often not comparable because, developmentally, the concepts are not relevant or significant across all age groups, thus limiting comparisons over time and across age groups.
It is generally recommended that investigators use multiple sources when measuring outcomes in young children (ie, parent report, nurse report, behavioral observation), but further exploration regarding reliable and valid ways to gather data that are reflective of the younger child’s experience is needed to ensure that the young child’s voice is heard.69–71 Only 1 of the reviewed studies included qualitative interviews as part of their research methodology.40 The use of developmentally appropriate interview strategies and mixed-methods research designs would allow for greater understanding of the young child’s experience and provide greater context for the interpretation of parent-proxy and behavioral observation data.71
It is possible that relevant articles were missed by the current review. To focus our review on supportive care interventions that addressed the distress of young children with cancer and/or their parents, our search terms were narrow to reflect this specific subcategory of supportive care interventions and did not include other areas that may have produced additional relevant articles. Future reviews may want to expand the scope of the search to include key words such as communication, social support, and prevention.35,36 In addition, our review focused primarily on describing intervention content and determining the state of knowledge development, with a less rigorous examination of research methodology. As the number of efficacy trials increases, the field would benefit from additional reviews that provide a more thorough examination of research methodology, including participant demographics, power analyses, psychometric properties of outcome measures, and appropriate application of statistical analyses to inform EBP recommendations.
Implications for Practice
Young child supportive care intervention research to manage distress is limited but has provided preliminary evidence supporting the use of distraction-based interventions, especially those where parents serve as coaches, during invasive procedures. Providing developmentally appropriate resources and direct instructional support to parents on how they can best support their child during invasive procedures is recommended. When available, parents should be encouraged to participate in cognitive-behavioral interventions that help parents learn problem-solving skills and strategies to manage their own distress. Current evidence indicates that parents benefit from participation in programs, specifically the Problem-Solving Skills Training program, and although not yet directly examined, these programs likely have indirect benefits for the young child and the larger family system. Future intervention studies examining how we can best meet the interrelated needs of young children with cancer and parents will advance the science of supportive care, which will continue to strengthen and shape delivery of family-centered care.
The authors wish to thank Kristin Edmondson for her assistance with article identification and coding.
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Cancer; Child; Child, Preschool; Family Relations; Intervention Studies; Parents; Review, Systematic; Stress, Psychological
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