A mixed methods assessment of coping with pediatric cancer

Abstract

The purpose of this study was to describe child coping and parent coping assistance with cancer-related stressors during treatment. Fifteen children (aged 6-12) with cancer and their parents (N = 17) completed semi-structured interviews and self-report measures to assess coping and coping assistance. Results suggest families utilized a broad array of approach and avoidance strategies to manage cancer and its treatment. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping among children with cancer and their parents. Using a mixed methods approach to assess coping provides a richer understanding of families’ experiences, which can better inform clinical practice.

Children with cancer and their families face a variety of complex physical and psychosocial challenges. In particular, they endure demanding healthcare regimens (Pai et al., 2007), painful medical procedures (Hedström, Haglund, Skolin, & von Essen, 2003; Klosky et al., 2007; Kuppenheimer & Brown, 2002), unpleasant treatment side effects (Bryant, 2003; Patterson, Holm, & Gurney, 2003), and the threat of death (Pai et al., 2007). Moreover, children and their families frequently report psychosocial cancer-related stressors, such as distressing emotional reactions (Hildenbrand, Clawson, Alderfer, & Marsac, 2011), disruption in routines and in social, occupational, and family roles (Kazak, Simms, & Rourke, 2002; Woodgate, Degner, & Yanofsky, 2003), and issues with peers including bullying and restricted participation in peer activities (Hildenbrand et al., 2011).

While most children and their families successfully adapt to cancer diagnosis and treatment, approximately one quarter to one third exhibit considerable challenges during this process (Kupst & Bingen, 2006). Specifically, a significant subset of children undergoing cancer treatment experience persistent cancer-related distress, including increased symptoms of anxiety, irritability, depression (Cavusoglu, 2001; Collins et al., 2000; Massie, 2004; Mulhern, Fairclough, Douglas, & Smith, 1994), and posttraumatic stress (Butler, Rizzi, & Handwerger, 1996). Children with cancer and their families are also at risk for other negative psychosocial consequences including poorer family functioning (Pai et al., 2007) and impaired quality of life (Eiser, Eiser, & Stride, 2005; Landolt, Vollrath, Niggli, Gnehm, & Sennhauser, 2006).

Adapting to stressors related to childhood cancer and its treatment requires adequate coping. According to Lazarus and Folkman (1984), coping represents “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (p. 142). In this transactional framework, coping is conceptualized as a dynamic, contextual process that varies across individuals, situations, and their related demands (Kupst, 1994; Kupst & Bingen, 2006). Applied to children, Skinner and Zimmer-Gembeck (2007) posit that coping encompasses “what children actually do—their profile of emotional, cognitive, and behavioral responses—in dealing with specific difficulties” (p. 120).

Several conceptual models and categorizations have been suggested to capture key aspects of coping, including problem- vs. emotion-focused coping (Lazarus & Folkman, 1984), approach vs. avoidance coping (Roth & Cohen, 1986), primary vs. secondary vs. relinquished control coping (Rudolph, Dennig, & Weisz, 1995), behavioral vs. cognitive coping (Latack & Havlovic, 1992), and direct vs. indirect coping (Barrett & Campos, 1991). Among the most frequently used and well-validated of these classification systems is Roth and Cohen’s (1986) approach- versus avoidance-oriented coping (Aldridge & Roesch, 2007). This classification system has been found useful for understanding coping with cancer (Aldridge & Roesch, 2007; Hildenbrand et al., 2011), and thus it was utilized as the framework for this study. Approach-oriented coping involves efforts directed towards managing a stressor or its associated emotions, while avoidance-oriented strategies are those intended to distance an individual from a stressor or related emotions (Roth & Cohen, 1986). Both can be adaptive depending on characteristics of the individual and stressor. Approach strategies are associated with positive outcomes when dealing with controllable stressors (Compas, Malcarne, & Fondacaro, 1988; Sorgen & Manne, 2002) and invasive procedures (Manne, Bakeman, Jacobsen, & Redd, 1993). For example, seeking and maintaining social support during treatment (an approach strategy) is positively related to emotional adjustment for pediatric cancer survivors (Kupst et al., 1995; Kyngas et al., 2001). Avoidant strategies, on the other hand, have been found helpful in uncontrollable situations (Compas et al., 1988) and for time-limited stressors (Suls & Fletcher, 1985), such as those often associated with cancer treatment, but have also been associated with increased depression, anxiety, and distress in pediatric cancer patients (Frank, Blount, & Brown, 1997).

Parents can influence children’s coping by providing direct instruction or suggestions for handling problematic situations (i.e., coaching), modeling their own coping responses, and shaping the general family context (e.g., family communication and conflict, parent-child relationship quality; Kliewer, Fearnow, & Miller, 1996; Power, 2004). The various ways that parents help their children manage stressors has been termed “coping assistance” (Prinstein, LaGreca, Vernberg, & Silverman, 1996). Research suggests that parents play a significant role in children’s adjustment to cancer by influencing their child’s cognitive appraisals and coping responses (Blount et al., 1989; Blount, Landolf-Fritsche, Powers, & Sturges, 1991; Skinner & Zimmer-Gembeck, 2007). Supporting the socialization of coping model in pediatric cancer, a recent investigation suggested close congruence between endorsed child coping and parent coping assistance (Hildenbrand et al., 2011). In addition, Sanger and colleagues (1991) suggest that parents can facilitate children’s adjustment to cancer by encouraging approach-oriented strategies (e.g., maintaining a hopeful outlook) and by fostering social and family support. However, research regarding the impact of specific coping assistance strategies on child outcomes in pediatric cancer is limited.

Although investigations conducted to date have greatly increased our knowledge about the ways in which children and their families manage cancer-related stressors, Kupst and Bingen (2006) note that “the state of coping research in pediatric oncology remains fragmented and confusing” (p. 44). Many studies have relied upon assessments that measure general coping styles or dispositions rather than coping specific to cancer-related stressors. While many of these self-report measures are empirically derived and well-researched, they are limited to assessing coping dispositions (i.e., what a child might do to cope with various stressors; Kupst & Bingen, 2006). Additional research examining actual coping behavior (assessed via observation or self-report) for cancer-related stressors would provide a more accurate understanding of coping in pediatric cancer (Kupst & Bingen, 2006). Additionally, most psycho-oncology research has focused on survivors, with relatively few investigations of coping and psychosocial functioning conducted during active treatment. Additional research examining coping during cancer treatment has important implications for both intervention development and clinical practice.

In order to more fully understand coping in the context of pediatric cancer, it is clear that multiple methods and sources of information are needed (Kupst & Bingen, 2006). Mixed methods research has demonstrated remarkable utility in understanding complex research questions and is thereby well-suited to this multifaceted area of inquiry (Creswell & Plano Clark, 2007). Quantitative research represents a highly practical method for obtaining coping data in large samples. Qualitative data, on the other hand, are rich in contextual and situational information. Combining qualitative and quantitative data capitalizes on these strengths to enable a more thorough understanding of complex phenomenon and answer questions that cannot be satisfied by either approach used alone (Creswell & Plano Clark, 2007). In this way, mixed methods research is a promising approach for enabling a more complete analysis of coping among children with cancer and their families.

The purpose of this study was to describe child coping and parent coping assistance with cancer-related stressors by implementing a triangulated mixed methods design. Additionally, this study aims to describe the extent to which qualitative interviews are consistent with well-known quantitative coping inventories and to suggest additional categories of coping and coping assistance that can undergo rigorous testing in the future. The current study sought to address gaps in prior research on coping with pediatric cancer by 1) focusing on coping and coping assistance during cancer treatment; 2) assessing coping with specific cancer-related stressors; 3) examining child coping and parent coping assistance by including both children and their parents as respondents; and 4) combining qualitative and quantitative data to provide a richer understanding of how children cope and how their parents help them manage specific cancer-related stressors. Specific research questions addressed in this investigation include:

1. What strategies do children report for coping with cancer-related stressors during treatment?

2. What strategies do parents report to facilitate their child’s coping (i.e., provide coping assistance) with cancer-related stressors during treatment?

3. What complementary and unique contributions do quantitative and qualitative data provide to understanding child coping and parent coping assistance?

Method

Procedure

Participants were recruited from a large, pediatric cancer center in the eastern United States. Children were eligible to participate if they were aged 6-12 years, diagnosed with cancer within the last year and currently undergoing treatment, cognitively capable of assenting and completing the interview, and if one parent provided consent and agreed to participate. Potential participants were screened for eligibility and approached by a member of the research team during an inpatient hospitalization or visit to an outpatient clinic to assess their interest in study participation. Families were asked to take part in a study aimed at better understanding how families deal with cancer and use coping tools. Of the 18 families approached, 83% (n = 15) chose to participate. Reasons for non-participation included lack of interest and feeling overwhelmed because of participation in other research studies. Children and parents independently participated in semi-structured interviews to assess coping and coping assistance for cancer-related stressors. Interviews were conducted by trained research assistants and took place either in the inpatient (i.e., child’s hospital room) or outpatient (i.e., oncology clinic) setting. Subsequently, children completed the How I Coped Under Pressure Scale (HICUPS; Ayers, Sandler, West, & Roosa, 1996) and parents completed the Parent Socialization of Coping Questionnaire (PSCQ; Miller, P. A., Kliewer, Hepworth, & Sandler, 1994) to assess child coping and parent coping assistance, respectively. Both interviews and questionnaires were administered such that results could be examined in the context of Roth and Cohen’s (1986) approach-avoidance coping model (See “Measures” and “Qualitative coding” for more details). This study was approved by the hospital’s Institutional Review Board.

Participants

Participants included 15 children with cancer and their parents (at least one parent per child). Children were between 6 to 12 years of age (M = 9.47, SD = 1.99). The majority of this sample (80%, n = 12) was White, with the remaining participants describing their ethnic background as Black/African American (13%, n = 2) and Asian (7%, n = 1). Cancer diagnoses of participating children included Acute Lymphoblastic Leukemia (ALL; 33%, n = 5), brain tumor (13%, n = 2), Lymphoma (13%, n = 2), Osteosarcoma (13%, n = 2), and other cancers (27%, n = 4). Time since diagnosis ranged from 1 day to 27 weeks (M = 6.8 weeks; SD = 8.63 weeks).

Of the 17 parents who participated in this study, 59% (n = 10) were mothers and 41% (n = 7) were fathers. Parents were aged between 31 and 51 years (M = 41.38, SD = 5.78). Most parents identified themselves as White (88%, n = 15), with the remaining parents indicating that they were Black/ African American (12%, n = 2). Parental education level ranged from completion of high school or GED (24%, n = 4) to partial or full completion of a college degree (47%, n = 8) or graduate/ professional degree (29%, n = 5). The current sample encompassed a wide range in socioeconomic status, with 35% (n = 6) reporting a total household income of $15,000 - $49,999; 29% (n = 5) $50,000 - $99,999; and 35% (n = 6) $100,000 or more.

Measures

Semi-structured Interview (child and parent versions)

A semi-structured qualitative interview guide was developed to assess child coping and parent coping assistance strategies utilized to manage cancer-related stressors (Hildenbrand et al., 2011). Children were asked, “What types of things do you do to help yourself deal with cancer or cancer treatment?” Parents were asked, “What types of things do you do to help your child cope with his/her cancer or cancer treatment?” Primary questions were followed by various prompts (e.g., “Can you tell me more?”, “What else have you done?”, etc.) to clarify or expand upon participant responses regarding child coping and parent coping assistance strategies. On average, the child interviews lasted 6 minutes (SD = 1.30, Range = 3.72 – 8.25) and the parent interviews lasted 9 minutes (SD = 5.25, Range = 3.57 – 20.30). Responses to interviews were coded consistent with Roth and Cohen’s (1986) approach-avoidance coping model (as described in the “Data Analysis” section below).

The How I Coped Under Pressure Scale (HICUPS) (Ayers et al., 1996)

The HICUPS is a 60-item measure that assesses children’s coping strategies with regard to a specific stressor, in this case cancer and cancer treatment and their reactions to it. The HICUPS has well-established reliability and validity and has been used across diverse groups of children facing a variety of stressors, including children of different ethnicities and income levels, and children facing divorce, parental bereavement, community violence, chronic medical stressors, and traumatic stressors (Ayers et al., 1996; Bal, Van Oost, De Bourdeaudhuij, & Crombez, 2003; Gonzales, Tein, Sandler, & Friedman, 2001; Kliewer et al., 1996; Kliewer, Lepore, Oskin, & Johnson, 1998; Kliewer & Lewis, 1995; Landolt, Vollrath, & Ribi, 2002; Prelow, Michaels, Reyes, Knight, & Barrera, 2002; Sandler, Tein, & West, 1994; Spaccarelli & Fuchs, 1997). The HICUPS yields four primary higher order constructs: Active Coping, Distraction, Support Seeking, and Avoidance Coping (Ayers et al., 1996; Sandler et al., 1994). Active coping involves directly focusing on the stressful event to deal with it either cognitively or behaviorally (e.g., efforts to think about the situation differently or to change the situation). Distraction coping includes strategies used to distract oneself from dealing with or thinking about the problem, whereas avoidance coping is characterized by attempts to manage emotions by trying to avoid or discontinue thinking about the problem entirely. Support seeking coping refers to the use of other people as resources to assist in seeking solutions to the problem (e.g., asking for advice) or in helping manage emotions by listening to feelings and providing understanding. Applying these coping dimensions to the approach-avoidance framework utilized in this study, avoidance coping included the scale constructs of Distraction and Avoidance, while Active Coping and Support Seeking were considered approach-oriented coping.

The Parent Socialization of Coping Questionnaire (PSCQ)(Miller, P. A. et al., 1994)

The PSCQ is a 60-item measure that assesses parents’ suggestions regarding children’s coping strategies with regard to a specific stressor, in this case cancer and cancer treatment and their child’s reactions to it. The measure parallels the HICUPS and provides similar subscale scores. Parents are asked to rate the extent to which they have encouraged or discouraged each specific child coping strategy by responding on a 7-point Likert scale (1 = strongly discouraged, 4 = neither encouraged nor discouraged, 7 = strongly encouraged). Reliability and validity of the measure have been established (Miller, P. A. et al., 1994). The PSCQ yields a six-factor model of parental socialization of coping: Problem-focused Coping, Positive Cognitive Restructuring, Distraction, Support Seeking, Avoidance, and Negative Actions. Problem-focused strategies include cognitive and behavioral efforts to manage or alter the stressor itself. Positive Cognitive Restructuring refers to thinking about the situation in a more positive way by focusing on its positive aspects or minimizing its negative features and thinking optimistically about the situation. Negative actions represent blaming or holding others responsible for the problem or stressor (Miller, P. A. et al., 1994). In this study, Problem-focused Coping, Positive Cognitive Restructuring, and Support Seeking were considered components of approach-oriented coping, while Distraction, Avoidance, and Negative Actions were classified as forms of avoidance coping.

Data Analysis

Qualitative coding

Interviews were audio-recorded, transcribed verbatim, and coded. Qualitative data were entered into NVivo (Version 8) (Gibbs, 2002) for analysis of themes regarding child coping and parent coping assistance. Coding criteria were developed through an iterative process that combined both theory (Roth & Cohen, 1986; Skinner & Zimmer-Gembeck, 2007) and data-based hierarchical coding schemes (Hruschka et al., 2004; Patton, 2002). These coding criteria were not mutually exclusive; in other words, a portion of a transcript could be assigned more than one code. Two trained research assistants independently coded each interview transcript for the presence of child coping (by child report) and parent coping assistance strategies (by parent report). After initial coding of the data, raters convened to review, discuss, and resolve inconsistencies in the application of codes and to clarify or revise coding criteria. These discussions are commonly employed in qualitative research and helped enhance the research team’s understanding of the data and ensure adequate inter-rater reliability (Armstrong, Gosling, Weinman, & Marteau, 1997). All transcripts were then re-coded based upon the modified coding criteria. Two rounds of this iterative coding process were employed in order to produce a final collective coding of the data. Final coding inter-rater reliability was high (94.3% agreement). Thematic saturation (i.e., when no new themes were identified) for child coping and parent coping assistance data occurred after interviewing the 12th child-parent dyad. Saturation is widely regarded as an indicator of the completeness of a dataset and provides validation for coding categories utilized (Bowen, 2008; Padgett, 2008).

Quantitative data transformation

Data from the HICUPS were used to classify children as to whether or not they endorsed each coping subscale. If children reported that they used one or more coping strategies within a given subscale at least “sometimes”, they were classified as endorsing that coping subscale. Data from the PSCQ were categorized as encouraged vs. discouraged vs. neither encouraged nor discouraged for each parent coping assistance subscale. A subscale was considered to be endorsed if parents reported that they “mildly”, “moderately”, or “strongly” encouraged their child to use one or more coping strategies within that subscale.

Merging qualitative and quantitative data

Following initial thematic and descriptive analysis of qualitative and quantitative data, the datasets were merged by mapping quantitative data onto qualitative codes. The quantitative subscales of the HICUPS and PSCQ were viewed as aggregated units similar to qualitative themes. The subscales derived quantitatively were directly compared to the themes developed qualitatively by using a data matrix. More specifically, the study authors reviewed each qualitatively coded interview segment and assigned, when possible, parallel coping and coping assistance subscales from the HICUPS/ PSCQ. After independently mapping quantitative subscales onto qualitative codes, the authors met to review, discuss, and resolve any discrepancies in the application of HICUPS/ PSCQ subscales to qualitative codes. A case-by-case analysis was then employed to examine the complementarity of the two forms of data for both coping and coping assistance. This data analysis procedure is frequently utilized in mixed methods studies with triangulated or embedded designs similar to the current study (Creswell & Plano Clark, 2007; Punch, 1998).

Results

Qualitative data illustrated that children utilized a range of coping strategies during cancer treatment, such as relaxation, seeking social support, distraction, and cognitive restructuring. Parents likewise employed a broad array of coping assistance strategies including promoting relaxation, promoting social support, encouraging distraction, facilitating emotional expression, providing information, and encouraging their child to take control. Despite this wide range in strategies across the sample, the number of strategies reported per family was limited (child coping: M = 3.73, SD = 1.94; parent coping assistance: M = 4.93, SD = 2.40). While qualitative data provided a more detailed and nuanced illustration of coping, quantitative results suggested a considerably greater number of strategies endorsed per family (child coping: M = 11.07, SD= 1.58; parent coping assistance: M = 10.24, SD= 1.35), including cognitive decision making, direct problem solving, seeking understanding, acceptance, cognitive and behavioral avoidance, and negative actions (See Table 1). A case-by-case analysis suggested that overall qualitative and quantitative data regarding child coping were complementary (See Tables 2 and 3). Results from combined quantitative and qualitative data analysis are provided below.

Table 1.

Frequency of Coping Strategies Endorsed on the HICUPS/ PSCQ

Coping Subscale	Child Coping		Parent Coping Assistance
	N	%	N	%
Approach Coping
Cognitive Decision Making	13	87	17	100
Direct Problem Solving	14	93	17	100
Seeking Understanding	12	80	15	88
Positive Cognitive Restructuring	15	100	17	100
Expressing Feelings	10	67	10	59
Problem-focused Support	12	80	16	94
Emotion-focused Support	14	93	17	100
Acceptance	13	87	10	59
Spirituality/ Religion	14	93	5	29
Avoidance Coping
Distraction	15	100	17	94
Behavioral Avoidance	15	100	17	100
Cognitive Avoidance	15	100	17	100
Negative Actions	4	27	-	-

Table 2.

Complementary Child Coping Strategies

Qualitative Code	Quantitative Subscale
Emotional expression	Expressing feelings
Distraction	Distraction
	Cognitive avoidance+
Practical strategies	Direct problem solving
Cognitive restructuring	Positive cognitive restructuring
	Cognitive avoidance+
	Acceptance
Cognitive avoidance	Cognitive avoidance+
Relaxation	Problem-focused support

⁺Quantitative subscale paralleled more than one qualitative code

Table 3.

Complementary Parent Coping Assistance Strategies

Qualitative Code	Quantitative Subscale
Emotional expression	Emotion-focused support+
Distraction	Distraction+
	Cognitive avoidance
Practical strategies	Direct problem solving+
Cognitive restructuring	Positive cognitive restructuring+
	Cognitive decision making
	Direct problem solving+
	Emotion-focused support+
	Problem-focused support+
	Acceptance+
Cognitive avoidance	Positive cognitive restructuring+
Providing information	Seeking understanding
	Acceptance+
	Problem-focused support+
	Emotion-focused support+
	Positive cognitive restructuring+
Supportive actions	Distraction+
	Emotion-focused support+
Encouraging spirituality	Religious coping

⁺Quantitative subscale paralleled more than one qualitative code

Child Coping Strategies

How do children cope with cancer-related stressors during treatment?

Approach coping strategies

Approach-oriented coping strategies that emerged in both the qualitative and quantitative data included cognitive restructuring, acceptance, relaxation, practical strategies, direct problem solving, problem-focused support, and emotional expression. Examples of approach coping attempts from qualitative data are included below:

“[I] just deal with it and know that by the time this is all over I’m going to be better and 100% cancer free.” Child participant, age 11, female (cognitive restructuring/ acceptance)

“[To deal with treatment, I] get my mom to massage me.” Child, age 11, male (relaxation/ problem-focused support)

“[After taking medications], I take a drink that I like.” Child, age 6, male (practical strategies/ direct problem solving)

“I cry [to deal with my cancer].” Child, age 12, female (emotional expression)

Avoidance coping strategies

Avoidance strategies endorsed in both qualitative and quantitative data included cognitive avoidance and distraction. Examples from qualitative data are provided below.

“I just don’t really think about [my cancer]… when somebody tries to help me, I push them off cause I don’t want to think about everything.” Child, age 12, female (cognitive avoidance)

“[To make myself feel better,] I color and watch cartoons.” Child, age 9, female (distraction)

What unique contributions do quantitative and qualitative data provide to understanding child coping?

Unique approach coping strategies

Unique approach coping strategies that emerged from qualitative data but were not reported quantitatively by children included maintaining normalcy and social support. Examples of these strategies from qualitative data are provided below.

“[To deal with cancer and treatment,] I just live the normal life I did before I got diagnosed.” Child, age 11, female (maintaining normalcy)

“I get company [to help myself feel better about cancer and treatment].” Child, age 11, male (seeking social support)

Strategies endorsed quantitatively that were not reported in qualitative interviews included cognitive decision making (e.g., think about ways to best handle the stressor), seeking understanding (e.g., try to understand the problem better by thinking about it), emotion-focused support (e.g., talking to others about one’s feelings), and religious coping (e.g., praying for comfort, asking God for help).

Unique avoidance coping strategies

There were no avoidance strategies reported by children in the interviews that were not endorsed on the HICUPS. Avoidance-oriented strategies endorsed by children quantitatively but not reported within the interviews included behavioral avoidance (e.g., attempts to stay away from the problem, avoiding people and things that make child feel upset) and negative actions (e.g., blame others, cause trouble).

Parent Coping Assistance Strategies

How do parents facilitate their child’s coping with cancer-related stressors during treatment?

Approach coping assistance strategies

A range of approach coping assistance strategies were endorsed by parents both qualitatively and quantitatively, such as encouraging cognitive restructuring, emotional expression, emotion-focused support, providing information, seeking understanding, problem-focused support, acceptance, practical strategies, direct problem solving, cognitive decision making, and religious or spiritual coping. Examples of these coping assistance strategies from qualitative data are provided below.

“[We explain to our child that] it’s not something that she did to get [cancer]… and [we] also help her understand that her situation isn’t terminal, that it could be worse… that it’s difficult but what other kids are going through is a lot worse.” Mother, child age 7 (facilitating cognitive restructuring)

“[To help my child deal with cancer, I] just [give] a lot of emotional support… if he needs to talk or just needs a hug. I run through all the emotions [with him]... And I [tell him that] all those feelings are normal… it’s normal to cry, it’s normal to be sad, it’s normal to be scared.” Mother, child age 6 (encouraging emotional expression/ emotion-focused support)

“We just try to talk about it scientifically, just to help her understand. And we explain to her what the situation is with her body.” Mother, child age 7 (providing information/promoting seeking understanding/ providing problem-focused support)

“[I tell my child that] crying, complaining… isn’t going to make it go away. It’s still going to be there. You have to find a way to deal with it. I told him [that] it’s part of us to get sick one day and it happened that we got cancer. But that doesn’t mean it’s not going to go away, it is. Other people deal with it, [so] we can deal with it. And I don’t let him go, ‘Oh I’m sick, can I do this?’ No, you have to keep moving.” Mother, child age 7 (promoting acceptance)

“When he’s in a lot of pain, I give him medicine and… I usually give him a massage.” Mother, child age 11 (facilitating practical strategies/ direct-problem solving)

“[I encourage my child] to find a way to deal with it…[to] find the best way to deal with it. Which is what we do, we find the best [way] we can to deal with [his cancer and treatment].” Mother, child age 7 (encouraging cognitive decision making)

“We pray a lot. Everything we are doing, we put God in it. We invite God to it and I think that’s what makes it easy.” Mother, child age 7 (encouraging spiritual/ religious coping)

Avoidance coping assistance strategies

Cognitive avoidance and distraction were endorsed by parents in both qualitative and quantitative data. Examples of these avoidance-oriented coping assistance strategies from qualitative data are provided below.

“Anything she wants to do at the time, we’re going to do. If it’s going to keep her mind off it, that’s what we’re going to do.” Father, child age 9 (encouraging cognitive avoidance)

“[We] bring up [his] toys and stuff that he plays with… that keeps him active, that keeps him going.” Father, child age 10 (encouraging distraction)

What unique contributions do quantitative and qualitative data provide to understanding parent coping assistance?

Unique approach coping assistance strategies

There were no approach coping assistance strategies endorsed on the PSCQ that were not reported during the interviews. Approach strategies that emerged from qualitative interviews but not reported quantitatively included encouraging relaxation, promoting efforts to maintain normalcy, encouraging one’s child to take control, establishing plans and routines, encouraging social support, taking control, and using supportive actions. Examples of these coping assistance strategies from qualitative data are included below.

“[I] relax him when he’s getting tests [and] blood work [by] talking, helping him relax, and encouraging him.” Mother, child age 10 (encouraging relaxation)

“I try to keep everything as normal as possible. [I] still make the same food [and] try to still do the same things with him.” Mother, child age 12 (promoting efforts to maintain normalcy)

“We’d come in the night before [a hospital stay], and I’d make a point of going to a nice hotel and out to a nice dinner and make it an adventure.” Father, child age 11 (establishing plans and routines)

“I kind of follow her lead. Whatever she wants to do to ease her mind, I kind of go along [with it]. If she wants to paint, we paint. If she wants to go to the chapel, we go to the chapel. If she wants to play a game, we play a game. So I follow her lead in what is going to keep her anxiety down.” Mother, child age 7 (encouraging child to take control)

“[I help my child deal with cancer by] making sure he’s got lots of visitors, lots of his friends.” Mother, child age 6 (encouraging social support)

“I told [my child that] we’re going to go and get [her hair] cut. I want to start cutting it, preparing her. She doesn’t like her hair cut… I want to start to ease her into not having anything. I’m pretty adamant. If I have to hire someone to come in here, I will.” Mother, child age 10 (taking control)

“[I] try to stay close to him. He’s the kind of kid that likes to touch. He likes to feel [his mother] or me next to him. We lay in bed with him.” Father, child age 10 (supportive actions)

Unique avoidance coping assistance strategies

There were no avoidance coping assistance strategies reported qualitatively that were not endorsed on the PSCQ. The only avoidance strategy that emerged from quantitative data that was not reported during the interview was encouraging behavioral avoidance (e.g., encouraging child to stay away from problem or avoid people/things that make the child feel upset).

Discussion

Coping with pediatric cancer and its treatment is a dynamic, multifaceted process that requires multiple methods of information to accurately assess and understand families’ experiences. Findings from qualitative data in this study indicate that children and parents utilize a wide array of coping and coping assistance strategies to manage physical and psychosocial stressors during cancer treatment. Despite this broad range of strategies, relatively few strategies were reported within each family during interviews. This finding is consistent with a similar qualitative investigation of coping during treatment (Hildenbrand et al., 2011) and suggests that additional support or education may help families supplement their inventory of coping strategies for cancer-related stressors. On the other hand, quantitative data from this study suggest that families implement a considerably greater number of strategies to manage cancer-related stress during treatment, which could indicate that participants more easily report coping strategies they utilize when prompted by a measure than when asked to recall them during an interview (i.e., without cues). It is also possible that children and parents tend to discuss only the most salient of strategies in their coping repertoire during interviews (Taylor, 2005). While qualitative data was limited in the number of strategies families reported, this data contributed to a more detailed and contextual understanding of coping. Conversely, quantitative data provided a more broad and exhaustive yet less nuanced overview of coping among families facing pediatric cancer treatment. Combining these methodological approaches, this investigation extends the existing literature by providing a more complete assessment of coping with cancer stressors during treatment.

While the qualitative interview drew a large variety and number of approach coping strategies, across the sample avoidance strategies were reported with notable frequency on the quantitative measure. For example, every child in the sample endorsed distraction as well as cognitive and behavioral avoidance on the HICUPS. This finding is consistent with prior research indicating that children with cancer may frequently exhibit avoidance coping (Bauld, Anderson, & Arnold, 1998; Phipps, Fairclough, & Mulhern, 1995). Avoidant strategies are considered to be appropriate for coping with unavoidable and time-limited stressors but have been associated with negative outcomes such as depression, anxiety, and distress in children with cancer (Frank et al., 1997). Thus, interventions to teach children appropriate times to use avoidance coping strategies and additional methods for coping with controllable or more chronic cancer-related stressors during treatment may be beneficial. However, it should be noted that several approach-oriented strategies were also commonly endorsed by children on the HICUPS, including direct problem solving (93%), cognitive restructuring (100%), emotion-focused support (93%), and spiritual/ religious coping (93%). Thus, in addition to helping children broaden their coping repertoire and apply coping strategies strategically, interventions should consider supporting those coping strategies which children already find helpful.

Similar to their children, parents endorsed a large variety of approach coping assistance strategies during the interview yet a high frequency of both approach and avoidance strategies on the PSCQ. Approach coping assistance strategies that were most commonly endorsed in quantitative data included encouraging cognitive decision making (100%), direct problem solving (100%), cognitive restructuring (100%), and emotion-focused support (100%). On the other hand, all parents reported encouraging cognitive and behavioral avoidance and nearly all (94%) endorsed distraction on the PSCQ. Thus, children and parents reported a greater number of approach coping strategies during interviews but frequently endorsed both approach and avoidant strategies on quantitative assessments. Our data support Kazak et al.’s (2007) suggestion that interventions targeting coping should be customized to each child and family’s experience, given the variability of preferred coping strategies and types of stressors incurred (e.g., controllable vs. uncontrollable, acute vs. chronic) across children undergoing cancer treatment.

Data from this study suggest a high degree of congruence between child coping and parent coping assistance strategies, providing further support for the general socialization of coping model (Kliewer et al., 1996; Miller, P. A. et al., 1994) and demonstrating its relevance in the pediatric cancer population. Few discrepancies were identified between endorsed child coping and parent coping assistance strategies. Specifically, negative actions (e.g., causing trouble, blaming or saying bad things about others) emerged as the only coping strategy that children endorsed which parents did not report encouraging their child to use. Because negative actions may create additional distress for parents or other family members, parents likely do not encourage this coping strategy. Additionally, this strategy is not generally considered socially acceptable, and thus parents may be less inclined to report encouraging negative actions in order to maintain social desirability. Reported parent coping assistance strategies without corresponding child coping strategies included providing information, establishing plans and routines, encouraging child to take control, parent taking control, and using supportive actions. It may be that children do not recognize these strategies as methods of coping, as they could also represent typical patterns of parent behavior across situations. Overall, findings highlight that parents play an important role in helping children cope with cancer-related stressors. Medical teams and intervention programs should consider partnering with parents and other caregivers to help children manage cancer and related stressors. For example, education and support can be provided to help parents promote higher levels of open family communication and social support, which are associated with better adjustment to pediatric cancer (Patenaude & Kupst, 2005; Trask et al., 2003; Varni, Katz, Colegrove, & Dolgin, 1994).

While qualitative and quantitative data were generally complementary in this study, each provided novel contributions to understanding child coping and parent coping assistance. Unique strategies emerged from the qualitative interviews that are not assessed by the HICUPS or PSCQ. For example, relaxation was identified as a coping strategy by several children in this sample during interviews but is not included as a coping strategy on the HICUPS. This suggests that existing quantitative measures could be expanded to include additional coping and coping assistance strategies. Qualitative methods may serve as useful avenues for future measure development and refinement of these measures in order to obtain more accurate assessments of coping. Additionally, qualitative data such as that obtained in this study may be especially useful for intervention development given their high level of specificity and contextual information. For example, specific strategies related to relaxation (e.g., listening to music, massages) that emerged from qualitative interviews could be incorporated into interventions targeting painful or distressing medical procedures. On the other hand, several strategies endorsed quantitatively were not reported in interviews, indicating that qualitative methods alone may not be sufficient to assess the breadth of children and parents’ coping strategies for pediatric cancer and its treatment. These findings highlight the utility of mixed methods designs for investigations of coping and underline the need for additional research utilizing both qualitative and quantitative methods in this population.

Limitations

While this study contributes to our understanding of how children and their parents manage cancer-related challenges during treatment and the extent to which qualitative interviews and quantitative coping inventories converge, several limitations should be noted. This investigation utilized a small sample of children with diverse cancer diagnoses. A larger sample would have permitted more sophisticated analysis of quantitative data. However, given that thematic saturation was achieved in qualitative interviews, the sample size was likely sufficient to address the study questions (Bowen, 2008; Padgett, 2008). Nevertheless, the quantitative component of this study is limited in scope by the small sample size. Specifically, we were unable to examine differences in coping based on factors such as type of cancer, time since diagnosis, or child age, gender, or family background. Thus, future research can expand on our findings by utilizing larger sample sizes and examining possible sub-group differences in child coping and parent coping assistance.

Additionally, this study was cross-sectional and thus did not assess changes in coping over time. Research suggests that children’s coping becomes more differentiated and complex as children develop greater cognitive maturity (Kupst & Bingen, 2006). Furthermore, changes in coping may reflect changes in the stressors children and their families experience, the quantity and quality of available resources, and mastery over chronic stressors. Given that the duration of cancer treatment can extend from several months to years (Kids With Cancer Society, 2008), longitudinal investigations of coping with cancer-related stressors during treatment are needed. In addition to repeated assessments over a longer duration of time, future research should consider the use of live observation or other methods to more thoroughly and accurately assess how children respond and cope with cancer-related stressors (e.g., interviews using hypothetical situations related to cancer and treatment). Lastly, this study did not assess the relationship between the types of strategies children and parents utilized and psychosocial outcomes. Future research should aim to identify strategies that may be most adaptive or effective for specific cancer-related stressors in order to inform interventions that promote adjustment among children with cancer and their families.

Clinical Implications

Results from this investigation have clear implications for clinical practice and the development of interventions to promote optimal adjustment and psychosocial functioning in children with cancer. Children undergoing treatment face many multifaceted stressors, yet some families reported few specific coping and coping assistance strategies during interviews, and avoidance strategies were frequently endorsed by children and parents on quantitative assessments. Given that information obtained by interviews varies from that of self-report measures, medical and psychosocial teams may consider incorporating questionnaires in addition to clinical interviews when attempting to determine how a family is managing pediatric cancer. Further, because the efficacy of a particular coping strategy varies across categories of stressors and individuals (Aldridge & Roesch, 2007; Miller, K. S. et al., 2009; Schmidt, Petersen, & Bullinger, 2003), interventions should encourage families to develop broad repertoires of strategies and help families strategically select and apply approach and avoidance strategies to manage cancer-related stressors children incur during treatment. Current recommendations for intervention development within pediatric cancer suggest that broad-based, low-cost, easily accessible psychoeducational interventions that can be tailored for each family are needed (Kazak et al., 2007; Marsac et al., 2012).

Conclusion

Children with cancer and their families engage in an array of coping behaviors to manage cancer-related challenges. Findings from this study extend previous research and demonstrate the complementary contributions of quantitative and qualitative assessments to the analysis of coping among children with cancer and their parents. Given the dynamic and multifaceted nature of coping, future research should consider the application of mixed methods designs to obtain more comprehensive assessments. A more thorough understanding of coping has important implications for clinical practice and interventions to promote positive psychosocial outcomes for children with cancer.