Issues in Comprehensive Pediatric Nursing, 2015; 38(1): 57–69 ß Informa Healthcare USA, Inc. ISSN: 0146-0862 print / 1521-043X online DOI: 10.3109/01460862.2014.988896
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CHILDREN WITH CHRONIC ILLNESSES: FACTORS INFLUENCING FAMILY HARDINESS*
Kenneth D. Woodson, MPh1, Sunny Thakkar, BA2, Michelle Burbage, MS1, Jessica Kichler, PhD2, and Laura Nabors, PhD1 1
School of Human Services, College of Education, Criminal Justice and Human Services, University of Cincinnati, Cincinnati, Ohio, USA and 2 Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio, USA
The current study assessed factors related to family hardiness in families of children coping with medical procedures related to a chronic illness. Participants were 68 parents of children with chronic illnesses, who were receiving complex medical treatment at a local hospital. Parents completed a scale assessing family hardiness and a semi-structured interview assessing their positive and negative coping strategies and those of their child. A linear regression analysis was used to examine the relationship between several predictors, including child age, number of medical conditions for the child, family income, number of positive and negative parent and child coping strategies, and family hardiness (outcome variable). Results indicated that parents of older children and children who exhibited negative coping strategies reported lower family hardiness. Older children may have had their chronic illness for a longer period of time, which could be wearing for the children and their families. Results of this study suggested that negative child coping may have deleterious effects on the family, and nurses and other health professionals should provide ideas for positive child coping and consider collaboration with mental health providers when they identify children facing emotional problems. Keywords: Coping of childern with chronic illnesses *Thanks are extended to students participating in the Child, Community and Health Lab at the University of Cincinnati for a research class for their assistance in collecting data. Received 6 October 2014; revised 12 November 2014; accepted 13 November 2014
Correspondence: Laura Nabors, Ph.D., Mail Location 0068, School of Human Services, CECH, University of Cincinnati, Cincinnati, Ohio 45221-0068. E-mail: naborsla@ ucmail.uc.edu.
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INTRODUCTION Children and families face stress when a child copes with trauma related to having a chronic illness, and a subset of children may be at risk for experiencing distress and problems coping with illness-related procedures (Barlow & Ellard, 2006). Assessment of variables predicting family functioning can provide information to assist in identifying families in need of support and identifying those that are hardy or resilient (Compas et al., 2012; Herzer et al., 2010). Some literature suggests that the family unit as a whole is resilient (Dewey & Crawford, 2007). Family hardiness is an indicator of positive family functioning and family hardiness is related to child disease management, course, and outcome (Kazak et al., 2009; Nabors et al., 2013). Family hardiness has been defined as the family’s ability to work together and be cohesive as they combat stressors and find solutions to problems and as a key variable contributing to positive family functioning (McCubbin et al., 1996; McCubbin & Thompson, 1987). For this article, we conceptualize hardiness as a type of resilience. Understanding predictors of family hardiness provides an opportunity to understand important information for identifying families who are resilient and adjusting and adapting well as a unit, despite coping with the stress related to their child’s chronic illness. Health professionals can then develop interventions to promote positive coping in families when a child has a chronic illness. The theoretical framework of this study was based on the Resiliency Model of Family Stress developed by McCubbin & McCubbin (1991). McCubbin and McCubbin operationalized resilience as involving adjustment and adaptation to a stressor, such as having a child with a chronic illness. Adjustment is impacted by the balance of risk and resilience factors for the parent, child, and family. Consequently, family resilience is related to resources and stressors for individuals in the family as well as resources and stressors for the family as a unit. Family Hardiness was a measure of the strengths and capabilities (i.e., resilience) of the family, and McCubbin et al. (1987) developed the Family Hardiness Index (FHI) to assess this concept. Strengths and capabilities are consistent with resilient functioning, and as such, we viewed family hardiness as a variable consistent with positive functioning in a resilient family. The objective of the current study was to assess the impact of specific child, parent, and family factors contributing to family hardiness. Several child-level variables that may be related to family hardiness were examined in the present study. For example, literature suggests that older children may face greater difficulty coping with their illness than young children, and this may be related poorer family functioning
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(Herzer et al., 2010). Therefore, we anticipated that older children would have lower family hardiness. We also examined the relations among gender of the child and family hardiness; however, we did not posit an a priori hypothesis about the relationship between child gender and family hardiness because literature has indicated equivocal results (e.g. Herzer et al., 2010; Kaczynski et al., 2009). When a child has more medical conditions, this may have a negative impact on the family (Cohen et al., 2011). We anticipated that children with more medical problems would have lower family hardiness. On the other hand, if the child exhibits positive coping with his or her illness the child and hence family members may exhibit more positive functioning (Thomsen et al., 2002). For this study, it was expected that positive coping strategies would be positively related to family hardiness, whereas negative child coping strategies would be have a deleterious impact on the child, and thus be negatively related to family hardiness. Two parent factors, number of positive and negative coping strategies, and one family-level factor, family income, were also investigated for the current study. Failla & Jones (1991) found that parent-level variables were related to family hardiness in families where a child was coping with a developmental disability. Research has indicated that positive parent coping is related to positive family functioning, whereas negative coping of parents is related to poorer family functioning (Compas et al., 2012; Kazak et al., 2009; Walsh, 2006). For the current study, relations among parental coping, either positive or negative, and family hardiness was also examined. It was expected that positive parent coping would be positively related to family hardiness. In turn, it was expected that increased negative parent coping with the child’s illness would be related to lower levels of family hardiness. A family-level factor that may be related to family hardiness is family socioeconomic status. Herzer et al. (2010) proposed that family socioeconomic status (SES) was inversely related to positive family functioning and we expected this type of relationship to occur between family income (our proxy variable for family SES) and family hardiness. METHODS Participants Sixty-eight parents/caregivers (43 mothers, 16 fathers, and 9 guardians), who were residing at a local Ronald McDonald House (RMH), volunteered to provide information about their child with a chronic illness, who was in a nearby hospital receiving treatment or a procedure
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related to his or her illness. Fifty-eight (85.3%) of these parents or caregivers, hereafter referred to as parents, were Caucasian and 58 (85.3%) were married. Child medical condition(s) types were categorized into several categories, including: transplantation, cancer, gastrointestinal disorders, heart problems, blood disorders, orthopedic disabilities, birth defects, and tumors. A university-based Institutional Review Board approved this study. Procedures Parents were approached in the kitchen or lounge area of a local RMH (see Nabors et al., 2013). Parental consent was required for study participation. Each parent reported about the functioning of his or her child who was receiving treatment at the children’s hospital, which was across the street from the RMH. Parents completed the Family Hardiness Index (FHI; McCubbin & Thompson, 1987). The FHI is a 20-item scale that assesses four aspects of family hardiness (co-oriented commitment, confidence, challenge, and control. Questions are rated on 4-point scales assessing how true a statement is about the family (0 ¼ false, 1 ¼ mostly false, 2 ¼ mostly true, and 3 ¼ totally true). Higher scores indicate higher family hardiness with a mean score of 47.4 (SD ¼ 6.7). Statements addressed how the family handled challenges and pulled together to address stressors (e.g. ‘‘We listen to each other’s problems, hurts, and fears; We do not feel that we can survive if another problem hits us’’.). This scale has adequate stability and validity coefficients and is related to family flexibility and quality of life for the family (Corcoran & Fischer, 2013; McCubbin et al., 1996). Total scores were used in study analyses. Parents provided written information about their child’s diagnosis and medication, gender, ethnic group, and age as well as an estimated level of family income. Parents then participated in a semi-structured interview (15 minutes) to provide information about their positive and negative strategies for coping with their child’s illness and their child’s positive and negative coping strategies for coping with his or her illness. Interviewers recorded parent responses to each question as well as any follow-up questions that were used to clarify parents’ responses (Thakkar, 2009). Parent coping strategies have been reviewed in previous research (Nabors et al., 2013). For this study, total number of parent positive and negative coping strategies were calculated and entered as variables in our quantitative analysis. Parent reports about their children’s coping strategies were analyzed using qualitative methods. Three of the authors reviewed parent
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interviews using a memoing technique (Grounded Theory; Strauss & Corbin, 1990). Next, they reviewed the interviews again to determine their own ideas of themes in child coping strategies. The authors met several times to determine categories in the data (key themes determined through constant comparison) with quotes representing parent examples for each theme. Disagreements were resolved based on consensus. The authors then determined the number of positive and negative coping strategies reported for each child. Parent report of the number of positive child coping strategies and number of negative child coping strategies were variables in the quantitative analysis. RESULTS Descriptive data Mean score on the FHI was 48.92 (SD ¼ 7.43, Range ¼ 25–60). Mean child age was 5 years, 3 months (SD ¼ 5 years, 9 months). Thirty-six of the children were female and 54 were Caucasian. Children had between 1 and 4 chronic conditions (M ¼ 1.5, SD ¼ 0.73). The mean frequency of positive parent coping strategies was 2.35 (SD ¼ 1.05, Range ¼ 1–5) and the mean for negative parent strategies was 2.75 (SD ¼ 1.21, Range ¼ 0– 6). The mean frequency of positive child coping strategies was 2.07 (SD ¼ 1.07, Range ¼ 0–4) and the mean for negative child strategies was 1.01 (SD ¼ 0.831, Range ¼ 0–4). Quantitative analysis A regression model was used to examine predictors of family hardiness. The predictors examined were: child gender, age, number of child medical conditions, number of child positive and negative coping strategies, number of positive and negative coping strategies of parents, and family income. The regression model was significant, F(7, 61) ¼ 2.43, p50.05, and the variables predicted 21.8% of the variance in FHI scores. Table 1 presents information about specific predictors in the model. Two of the predictors demonstrated significant main effects, child age in years (B ¼ 0.25, Std Error ¼ 0.14, t ¼ 2.09, p50.05) and the number of negative coping strategies for the child (B ¼ 0.31, Std Error ¼ 1.13, t ¼ 2.64, p50.05). Child gender and number of medical conditions, family income, parent coping strategies, and child positive coping strategies were not significant predictors of family hardiness. Interaction terms were not significant.
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Table 1. Regression model for predictors of family hardiness
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Variables Child age in years Child gender Number negative child strategies Number positive child strategies Family income Number parent negative Strategies Number positive parent strategies
Unstandardized Beta
Standard Error
Standardized Beta
t
p
0.297 2.507 2.979 0.426 0.636 1.103 0.310
0.142 1.662 1.126 0.813 0.479 0.733 0.890
0.253 0.145 0.311 0.064 0.158 0.187 0.045
2.087 1.237 2.636 0.524 1.327 1.505 0.349
0.041 0.221 0.011 0.602 0.190 0.137 0.729
Qualitative analyses Review of parent report of child coping indicated 4 themes representing positive child coping: (1) staying active in order to distract from stressors, (2) physical comfort from a loved one, (3) keeping a positive attitude, and (4) the child being able to participate in therapy at the hospital that speeded child recovery. Table 2 presents themes for parent views of positive child coping strategies. The most frequent method of child coping noticed by parents was that being active often served to distract the child from focusing on his or her medical condition. Engaging in play also served as distraction and provided an outlet for the child to release stress-related feelings. Children engaged in play by using toys and electronics (e.g. television, cell phones, and computers). One parent told interviewers, ‘‘He watches a lot of his Spiderman shows. He also plays with all his toys. These things usually take his mind off of things’’. Parents reported physical comfort, such as a soothing gentle touch or massage was the second most frequent method of coping for their child. One parent stated, ‘‘We also talk to her and use gentle touch to cope. Like rub her head and back. The nurses don’t like it so we do it when they are gone. It calms her down’’. Positive attitude also was important. For instance, one parent reported, ‘‘He (the child) has a very positive attitude. He is very consistent and likes to work hard. The therapist he works with says he is very determined’’. The third most frequent child coping factor identified by parents was the special therapy services (e.g. occupational therapy, psychotherapy) available at the children’s hospital. These additional therapy services were viewed by parents as being ‘‘value added’’ for the child and supporting his or her physical recovery as well as providing emotional support for the child. Parents also provided information about factors that were making coping difficult for their child. It is important to note that the majority of parents reported their child was coping well in the face of a significant
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Table 2. Positive child coping strategies Themes Staying active in order to distract from stressors
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Physical comfort from a loved one Keeping a positive attitude
Representative Quote from a Parent ‘‘Playing video games and watching movies. He gets to Skype with his classroom twice a day which keeps him interactive with his friends’’. ‘‘In the hospital, he is really comforted by being close to me or being rocked’’. ‘‘He looks at it as one big vacation. When he goes to the hospital to get treated he doesn’t complain and just keeps moving through. He just got diagnosed in November so things have been moving very quickly for him and he keeps a very positive attitude’’.
Table 3. Negative child coping strategies Themes
Representative Quote from a Parent
Being noncompliant about using medical equipment Strong negative emotional reactions
‘‘She’s pulled out her IV a few times and she’s pulled down her air tubes in her nose’’. ‘‘They have a hard time putting in her IV which hurts her, and prepping her for surgery is scary for her as well. When she gets upset I cannot calm her down’’. ‘‘He also cried a lot because he didn’t understand what was going on’’.
Lack of knowledge about his/her illness
illness, such as one parent who told interviewers, ‘‘Really there’s nothing that we can think of. She really is a perfect angel’’. However, three themes related to negative coping did emerge: (1) being noncompliant with medical procedures, (2) having strong negative emotional reactions, and (3) lacking knowledge about his/her illness and upcoming medical procedures which contributed to child stress. Themes and representative quotes are in Table 3. A common theme reported by parents was resistance to medical procedures, such as pulling medical tubes out. A key quote representing resistance was presented by a mother of a 4-year old boy receiving treatment for gastrointestinal problems, who reported that her son ‘‘cries and throws up; he resists and struggles when they are trying to do procedures’’. A mother of a 6-year old boy with Rasmussen Disease stated, ‘‘Sometimes we have to force him to take his meds’’. Some parents reported their child had strong, negative emotional reactions to medical procedures or being medically ill. These negative emotional reactions could result in some children becoming
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uncommunicative. An example of a quote representing parent concern over child anxiety was, ‘‘He gets a lot of anxiety over things he has to do, such as procedures, and it makes things so bad and more difficult. He has fears that something will hurt and so he builds up a lot of anxiety and the situation turns into a chaotic and painful situation’’. One mother of a 5-year-old girl described her daughter as shutting down by, ‘‘not talking about the illness and hospitalization. She eventually needs to process it’’. Another example of behavior that was thought to be due anxiety was, ‘‘she dramatizes things, makes them worse than what they are. This causes fights with the nurses sometimes’’. Another mother described her 12-year-old son as ‘‘getting down and feeling sad and depressed’’. When this occurred, her son stopped talking with others and became isolated and had even more difficulty dealing with his hospitalization. Negative reactions about being ill also involved sadness related to not being able to attend school and interact with family and friends. Negative reactions due to fear, largely related to the lack of knowledge the child had about the medical procedures, also were reported. DISCUSSION Results of this study provided some support for the Resiliency Model of Family Stress (McCubbin & McCubbin, 1991), as some risk and resilience factors were related to family hardiness. Specifically, results revealed that that higher numbers of parent-reported negative coping strategies exhibited by the child were related to lower family hardiness. Other researchers have also pointed to the adverse impact of negative child coping on both child and parental adjustment (e.g. Thomsen et al., 2002). Our findings also indicated that older age of the child with the chronic illness was associated with relatively lower levels of family hardiness. Older children may have had their illness for a longer period of time, and this may have a deleterious effect on the family. This may occur because these children may have had more critical incidents and hospitalizations which could reduce both their and their family members’ feelings of hardiness or efficacy for coping in the face of the child’s illness (Herzer et al., 2010). On the other hand, negative child coping strategies exhibited by the child could be connected with child emotional and behavioral problems, which can cause parental stress and then negatively impact family hardiness (Compas et al., 2012; Kazak et al., 2009). These ideas, however, are speculative in nature. Further research will be needed to examine the aforementioned ideas. It also is important to discuss the fact that several demographic variables were not related to family hardiness. For instance, findings did not reveal a significant relationship between number of child medical
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problems and family hardiness. This contrasted with the findings of previous research, showing that children with more medical problems had greater family stress and lower family functioning (Cohen et al., 2011). The children in the current study were experiencing acute distress related to undergoing medical procedures in the hospital, which may have over-shadowed the influence of number of conditions, in terms of influencing parent perceptions of family stress and hardiness. Additionally, child gender was not related to family hardiness. Research in this area is equivocal and continued study will untangle relations among child gender and family hardiness. Contrary to our expectations and findings of previous research (Herzer et al., 2010), family income was not related to family hardiness. It may be that hardiness is a robust concept, related to a ‘‘bounce back’’ attitude that is not dependent on family income. In terms of the relationship between child variables and family hardiness, increased numbers of child positive coping strategies were not associated with family hardiness. It may be that negative strategies and coping poorly are more important to family hardiness than positive coping, because viewing the negative strategies is upsetting to family members. This is an area for further study, and in-depth interviews may be a method for exploration of how positive and negative child coping strategies impact parents and other family members. It is important to remember, however, that parent reports of child coping strategies were used. Thus, child reports of their coping could have a different relationship with parent report of family hardiness. Parents’ reports of their own positive and negative coping strategies were not related to family hardiness. This could have occurred because family hardiness levels were high in relation to those reported in previous research (e.g. Corcoran & Fischer, 2013; McCubbin et al., 1996). If families were already fairly hardy, as was the case for this sample, then parent coping may have been relatively less important because all is going relatively well in terms of coping as a family. Thus, it may be that family adjustment and adaptation is often marked by resilience, as family members rally around the child to cope with a significant stressor (McCubbin et al., 1996; Nabors et al., 2013; Walsh, 2006). Qualitative coding of information in transcripts of the interviews indicated that parents reported many positive strategies exhibited by their child when he or she was coping with his or her illness or illness-related medical problems. Parents observed that their children often used distraction (e.g. playing games, watching TV, interacting with others on Skype) to positively cope with illness-related pain, medical procedures, or being ‘‘stuck’’ in the hospital. Similarly, Jaser & White (2011) reported that distraction could be positive, enhancing coping of youth
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with Type I diabetes. Through our observations at the RMH, this team has observed that interacting with peers and family on Skype may offer opportunities for social connection and support, which further buffer the child and family against negative thoughts and feelings. These interactions can promote feelings of efficacy, which would boost the resilience or hardiness of all family members. Skype or face time interactions with classmates may improve feelings of connection with classmates, allowing the child to maintain close ties with school, further boosting morale and positive feelings. Parents being able to physically comfort the child and the child’s positive and upbeat attitude were two other themes related to positive coping. Children whose parents reported that they employed positive coping strategies were resilient when facing stressors, which promotes their own positive attitudes as well as positive attitudes of other family members (Thomsen et al., 2002). Children also may benefit from gentle touch by or cuddling with their parents, which may improve their feelings of connection with parents (Field, 2014). Allowing physical connection with the child may improve parent attitudes and feelings of ‘‘closeness’’ with their child, thereby improving parent mood; this, in turn, may have positively impacted parent ratings, as child behavior effects parent well-being and perceptions (Ambert, 2013). Further study, perhaps using interviews may provide insights from parents about the key ways in which child attitude and being able to touch and physically comfort their child is critical to their perceptions of family hardiness. Avoiding or resisting medical procedures was a negative child coping strategy mentioned by some of the parents. Thomsen et al. (2002) reported that this negative coping was stressful for parents. When a child resists needle sticks and pulls out intravenous lines, he or she may be very afraid and may be increasing the pain and anxiety related to undergoing the procedures. Parents need to receive information to promote child coping with painful procedures. Coaching the parents and child on the use of relaxation and positive imagery may be one way to help children cope positively with medical procedures. Parents also reported that children who were experiencing significant anxiety could dramatize what was happening, causing even further anxiety and avoidance while experiencing medical procedures. This cycle could escalate, thereby negatively impacting child functioning and recovery. Referring children who are very reactive or dramatic for a brief counseling intervention, where parent and child learn to ‘‘dial down the drama’’ by practicing relaxation or using distraction, may help the child cope and in the long run this may be related to improved family hardiness. Nurses and other health professionals who are part of the ‘‘medical team’’ can teach children positive coping strategies that may
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improve their functioning and reduce the discomfort they feel related to medical procedures (McAllister & McKinnon, 2009). When a child’s coping remains negative and attempts to teach positive coping strategies are unsuccessful, it may be beneficial to refer the child for consultation or evaluation by a pediatric psychologist or social worker at the children’s hospital for additional support. Several factors may have limited the generalizability of our results. First, reliance on hardiness/resilience theory may have foreclosed the analyses, so that other factors such as hope and grief were overlooked. The other authors examining themes were not aware of the hardiness measure, which may have mitigated this shortcoming; but, this remains an area for further research. Second, children were undergoing medical procedures at a local hospital. As such, results might not generalize to families where a child has a chronic illness. However, hardiness ratings were high within the study participants, even though parents were in a very stressful situation. It may be that families are marked by resilience as they cope with their child’s chronic illness. As mentioned, this study relied on parent report of child functioning, and different results may have been obtained using child or observer report of child coping strategies. Moreover, the interview was brief and an in-depth interview would have yielded different results, or more comprehensive information on child coping. The majority of study participants were Caucasian and our findings do not address coping and hardiness for families from different ethnic and cultural groups. The sample size was small, which could have limited power to detect findings for interaction terms in the regression analysis. More information about child medical conditions and procedures would provide further insights into the history of child illness and medical procedures. This type of information would allow for an estimation of the severity of the child’s condition and procedures. This would be important to ascertain in future studies, because severity of the current hospitalization may impact parent perceptions. It may be difficult for parents to discuss the severity of their child’s condition. Hence, nurses and health professionals should watch for times when parents feel comfortable discussing their child’s history and their child’s coping so that they can glean information for intervention purposes. Study findings supported the importance of assessing child age and negative child coping strategies when determining family hardiness during a medical hospitalization. Findings provided some support for the idea that risk factors for the child are related to family hardiness. More information about the relations among protective factors and hardiness is needed. Perhaps other protective factors, such as extended family support, should be examined in future studies. Improving child coping skills and teaching positive strategies to replace more negative ones can
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reduce child anxiety and resistance to medical procedures and improve child coping with medical procedures, and this too could be positively related to family hardiness. Conceptualizing of the family as resilient has clinical implications, moving health professionals toward a more positive frame when intervening with families (Hawley, 2000). Nurses and health professionals may want to interview parents to determine whether older children are coping well, because, although they may have been to the hospital before, the stress of multiple hospitalizations and long-term coping with an illness could have accumulated, and children could be experiencing significant emotional distress. If this is the case, the child might need support or referral to cope with medical procedures and recover after experiencing them. Finally, we believe that further research is needed to determine reasons for gains and losses in family hardiness as the child progresses through different illness stages and different developmental levels for the child and his or her family members. Longitudinal studies to assess coping over time and in different situations will provide knowledge for health care professionals and can guide the development of interventions to promote family and child hardiness as the family and child adjust to the child’s chronic illness. DECLARATION OF INTEREST This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. The authors have no conflicts of interest to report. REFERENCES Ambert, A-M. (2013). The effect of children on parents: Second edition. New York, (NY): Routeledge. Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32, 19–31. Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127, 529–538. Compas, B. E., Jaser, S. S., Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Review of Clinical Psychology, 8, 455–480. Corcoran, K., & Fischer, J. (Eds.) (2013). Measures for clinical practice and research: A sourcebook, 5th Ed., Vol. 1. Couples, families, and children (p. 297). New York (NY): Oxford University Press.
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Dewey, D., & Crawford. S. G. (2007). Correlates of maternal and paternal adjustment to chronic childhood disease. Journal of Clinical Psychology in Medical Settings, 14, 219–226. Failla, S., & Jones, L. C. (1991). Families of children with developmental disabilities: An examination of family hardiness. Research in Nursing and Health, 14, 41–50. Field, T. M., Ed. (2014). Touch in early development. New York (NY): Psychology Press. Hawley, D. R. (2000). Clinical implications of family resilience. American Journal of Family Therapy, 28, 101–116. Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., Piazza-Waggoner, C., & Zeller, M. H. (2010). Family functioning in the context of pediatric conditions. Journal of Developmental and Behavioral Pediatrics, 31, 26–34. Jaser, S. S., & White, L. E. (2011). Coping and resilience in adolescents with type 1 diabetes. Child: Care, Health and Development, 37, 335–342. Kaczynski, K. J., Claar, R. L., & Logan, D. E. (2009). Testing gender as a moderator of associations between psychosocial variables and functional disability in children and adolescents with chronic pain. Journal of Pediatric Psychology, 34, 738–748. Kazak, A. E., Rourke, M. T., & Navsaria, N. (2009). Families and other systems in pediatric psychology. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology: Fourth edition (pp. 656–671). New York (NY): Guilford. McAllister, M., & McKinnon, J. (2009). The importance of teaching and learning resilience in the health disciplines: A critical review of the literature. Nurse Education Today, 29, 371–379. McCubbin, H., & Thompson, A. (Eds.), (1987). Family assessment inventories for research and practice. Madison (WI): University of Wisconsin-Madison. McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment: Resiliency, coping and adaptation: Inventories for research and practice. Madison (WI): University of Wisconsin Publishers. McCubbin, M. A., & McCubbin, H. I. (1991). Family stress theory and assessment: The resiliency model of family stress, adjustment, and adaptation. In H. I. McCubbin, et al (Eds.), Family assessment inventories for research and practice (pp. 127–133). Madison (WS): University of Wisconsin-Madison. Nabors, L. A., Kichler, J. C., Brassell, A., Thakkar, S., Bartz, J., Pangallo, J., Van Wassenhove, B., & Lundy, H. (2013). Factors related to caregiver state anxiety and coping with a child’s chronic illness. Families, Systems, & Health, 31, 171–180. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Thousand Oaks (CA): Sage. Thakkar, S. (2009). Parent and child coping for children with chronic illnesses and severe medical conditions. Cincinnati (OH): University of Cincinnati: Unpublished Senior Honor’s Thesis. Thomsen, A. H., Compas, B. E., Colletti, R. B., Stanger, C., Boyer, M. C., & Konik, B. S. (2002). Parent reports of coping and stress responses in children with recurrent abdominal pain. Journal of Pediatric Psychology, 27, 215–226. Walsh, F. (2006). Strengthening family resilience: Second edition. New York (NY): Guilford.
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CHILDREN WITH CHRONIC ILLNESSES: FACTORS INFLUENCING FAMILY HARDINESS*
Kenneth D. Woodson, MPh1, Sunny Thakkar, BA2, Michelle Burbage, MS1, Jessica Kichler, PhD2, and Laura Nabors, PhD1 1
School of Human Services, College of Education, Criminal Justice and Human Services, University of Cincinnati, Cincinnati, Ohio, USA and 2 Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio, USA
The current study assessed factors related to family hardiness in families of children coping with medical procedures related to a chronic illness. Participants were 68 parents of children with chronic illnesses, who were receiving complex medical treatment at a local hospital. Parents completed a scale assessing family hardiness and a semi-structured interview assessing their positive and negative coping strategies and those of their child. A linear regression analysis was used to examine the relationship between several predictors, including child age, number of medical conditions for the child, family income, number of positive and negative parent and child coping strategies, and family hardiness (outcome variable). Results indicated that parents of older children and children who exhibited negative coping strategies reported lower family hardiness. Older children may have had their chronic illness for a longer period of time, which could be wearing for the children and their families. Results of this study suggested that negative child coping may have deleterious effects on the family, and nurses and other health professionals should provide ideas for positive child coping and consider collaboration with mental health providers when they identify children facing emotional problems. Keywords: Coping of childern with chronic illnesses *Thanks are extended to students participating in the Child, Community and Health Lab at the University of Cincinnati for a research class for their assistance in collecting data. Received 6 October 2014; revised 12 November 2014; accepted 13 November 2014
Correspondence: Laura Nabors, Ph.D., Mail Location 0068, School of Human Services, CECH, University of Cincinnati, Cincinnati, Ohio 45221-0068. E-mail: naborsla@ ucmail.uc.edu.
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INTRODUCTION Children and families face stress when a child copes with trauma related to having a chronic illness, and a subset of children may be at risk for experiencing distress and problems coping with illness-related procedures (Barlow & Ellard, 2006). Assessment of variables predicting family functioning can provide information to assist in identifying families in need of support and identifying those that are hardy or resilient (Compas et al., 2012; Herzer et al., 2010). Some literature suggests that the family unit as a whole is resilient (Dewey & Crawford, 2007). Family hardiness is an indicator of positive family functioning and family hardiness is related to child disease management, course, and outcome (Kazak et al., 2009; Nabors et al., 2013). Family hardiness has been defined as the family’s ability to work together and be cohesive as they combat stressors and find solutions to problems and as a key variable contributing to positive family functioning (McCubbin et al., 1996; McCubbin & Thompson, 1987). For this article, we conceptualize hardiness as a type of resilience. Understanding predictors of family hardiness provides an opportunity to understand important information for identifying families who are resilient and adjusting and adapting well as a unit, despite coping with the stress related to their child’s chronic illness. Health professionals can then develop interventions to promote positive coping in families when a child has a chronic illness. The theoretical framework of this study was based on the Resiliency Model of Family Stress developed by McCubbin & McCubbin (1991). McCubbin and McCubbin operationalized resilience as involving adjustment and adaptation to a stressor, such as having a child with a chronic illness. Adjustment is impacted by the balance of risk and resilience factors for the parent, child, and family. Consequently, family resilience is related to resources and stressors for individuals in the family as well as resources and stressors for the family as a unit. Family Hardiness was a measure of the strengths and capabilities (i.e., resilience) of the family, and McCubbin et al. (1987) developed the Family Hardiness Index (FHI) to assess this concept. Strengths and capabilities are consistent with resilient functioning, and as such, we viewed family hardiness as a variable consistent with positive functioning in a resilient family. The objective of the current study was to assess the impact of specific child, parent, and family factors contributing to family hardiness. Several child-level variables that may be related to family hardiness were examined in the present study. For example, literature suggests that older children may face greater difficulty coping with their illness than young children, and this may be related poorer family functioning
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(Herzer et al., 2010). Therefore, we anticipated that older children would have lower family hardiness. We also examined the relations among gender of the child and family hardiness; however, we did not posit an a priori hypothesis about the relationship between child gender and family hardiness because literature has indicated equivocal results (e.g. Herzer et al., 2010; Kaczynski et al., 2009). When a child has more medical conditions, this may have a negative impact on the family (Cohen et al., 2011). We anticipated that children with more medical problems would have lower family hardiness. On the other hand, if the child exhibits positive coping with his or her illness the child and hence family members may exhibit more positive functioning (Thomsen et al., 2002). For this study, it was expected that positive coping strategies would be positively related to family hardiness, whereas negative child coping strategies would be have a deleterious impact on the child, and thus be negatively related to family hardiness. Two parent factors, number of positive and negative coping strategies, and one family-level factor, family income, were also investigated for the current study. Failla & Jones (1991) found that parent-level variables were related to family hardiness in families where a child was coping with a developmental disability. Research has indicated that positive parent coping is related to positive family functioning, whereas negative coping of parents is related to poorer family functioning (Compas et al., 2012; Kazak et al., 2009; Walsh, 2006). For the current study, relations among parental coping, either positive or negative, and family hardiness was also examined. It was expected that positive parent coping would be positively related to family hardiness. In turn, it was expected that increased negative parent coping with the child’s illness would be related to lower levels of family hardiness. A family-level factor that may be related to family hardiness is family socioeconomic status. Herzer et al. (2010) proposed that family socioeconomic status (SES) was inversely related to positive family functioning and we expected this type of relationship to occur between family income (our proxy variable for family SES) and family hardiness. METHODS Participants Sixty-eight parents/caregivers (43 mothers, 16 fathers, and 9 guardians), who were residing at a local Ronald McDonald House (RMH), volunteered to provide information about their child with a chronic illness, who was in a nearby hospital receiving treatment or a procedure
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related to his or her illness. Fifty-eight (85.3%) of these parents or caregivers, hereafter referred to as parents, were Caucasian and 58 (85.3%) were married. Child medical condition(s) types were categorized into several categories, including: transplantation, cancer, gastrointestinal disorders, heart problems, blood disorders, orthopedic disabilities, birth defects, and tumors. A university-based Institutional Review Board approved this study. Procedures Parents were approached in the kitchen or lounge area of a local RMH (see Nabors et al., 2013). Parental consent was required for study participation. Each parent reported about the functioning of his or her child who was receiving treatment at the children’s hospital, which was across the street from the RMH. Parents completed the Family Hardiness Index (FHI; McCubbin & Thompson, 1987). The FHI is a 20-item scale that assesses four aspects of family hardiness (co-oriented commitment, confidence, challenge, and control. Questions are rated on 4-point scales assessing how true a statement is about the family (0 ¼ false, 1 ¼ mostly false, 2 ¼ mostly true, and 3 ¼ totally true). Higher scores indicate higher family hardiness with a mean score of 47.4 (SD ¼ 6.7). Statements addressed how the family handled challenges and pulled together to address stressors (e.g. ‘‘We listen to each other’s problems, hurts, and fears; We do not feel that we can survive if another problem hits us’’.). This scale has adequate stability and validity coefficients and is related to family flexibility and quality of life for the family (Corcoran & Fischer, 2013; McCubbin et al., 1996). Total scores were used in study analyses. Parents provided written information about their child’s diagnosis and medication, gender, ethnic group, and age as well as an estimated level of family income. Parents then participated in a semi-structured interview (15 minutes) to provide information about their positive and negative strategies for coping with their child’s illness and their child’s positive and negative coping strategies for coping with his or her illness. Interviewers recorded parent responses to each question as well as any follow-up questions that were used to clarify parents’ responses (Thakkar, 2009). Parent coping strategies have been reviewed in previous research (Nabors et al., 2013). For this study, total number of parent positive and negative coping strategies were calculated and entered as variables in our quantitative analysis. Parent reports about their children’s coping strategies were analyzed using qualitative methods. Three of the authors reviewed parent
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interviews using a memoing technique (Grounded Theory; Strauss & Corbin, 1990). Next, they reviewed the interviews again to determine their own ideas of themes in child coping strategies. The authors met several times to determine categories in the data (key themes determined through constant comparison) with quotes representing parent examples for each theme. Disagreements were resolved based on consensus. The authors then determined the number of positive and negative coping strategies reported for each child. Parent report of the number of positive child coping strategies and number of negative child coping strategies were variables in the quantitative analysis. RESULTS Descriptive data Mean score on the FHI was 48.92 (SD ¼ 7.43, Range ¼ 25–60). Mean child age was 5 years, 3 months (SD ¼ 5 years, 9 months). Thirty-six of the children were female and 54 were Caucasian. Children had between 1 and 4 chronic conditions (M ¼ 1.5, SD ¼ 0.73). The mean frequency of positive parent coping strategies was 2.35 (SD ¼ 1.05, Range ¼ 1–5) and the mean for negative parent strategies was 2.75 (SD ¼ 1.21, Range ¼ 0– 6). The mean frequency of positive child coping strategies was 2.07 (SD ¼ 1.07, Range ¼ 0–4) and the mean for negative child strategies was 1.01 (SD ¼ 0.831, Range ¼ 0–4). Quantitative analysis A regression model was used to examine predictors of family hardiness. The predictors examined were: child gender, age, number of child medical conditions, number of child positive and negative coping strategies, number of positive and negative coping strategies of parents, and family income. The regression model was significant, F(7, 61) ¼ 2.43, p50.05, and the variables predicted 21.8% of the variance in FHI scores. Table 1 presents information about specific predictors in the model. Two of the predictors demonstrated significant main effects, child age in years (B ¼ 0.25, Std Error ¼ 0.14, t ¼ 2.09, p50.05) and the number of negative coping strategies for the child (B ¼ 0.31, Std Error ¼ 1.13, t ¼ 2.64, p50.05). Child gender and number of medical conditions, family income, parent coping strategies, and child positive coping strategies were not significant predictors of family hardiness. Interaction terms were not significant.
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Table 1. Regression model for predictors of family hardiness
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Variables Child age in years Child gender Number negative child strategies Number positive child strategies Family income Number parent negative Strategies Number positive parent strategies
Unstandardized Beta
Standard Error
Standardized Beta
t
p
0.297 2.507 2.979 0.426 0.636 1.103 0.310
0.142 1.662 1.126 0.813 0.479 0.733 0.890
0.253 0.145 0.311 0.064 0.158 0.187 0.045
2.087 1.237 2.636 0.524 1.327 1.505 0.349
0.041 0.221 0.011 0.602 0.190 0.137 0.729
Qualitative analyses Review of parent report of child coping indicated 4 themes representing positive child coping: (1) staying active in order to distract from stressors, (2) physical comfort from a loved one, (3) keeping a positive attitude, and (4) the child being able to participate in therapy at the hospital that speeded child recovery. Table 2 presents themes for parent views of positive child coping strategies. The most frequent method of child coping noticed by parents was that being active often served to distract the child from focusing on his or her medical condition. Engaging in play also served as distraction and provided an outlet for the child to release stress-related feelings. Children engaged in play by using toys and electronics (e.g. television, cell phones, and computers). One parent told interviewers, ‘‘He watches a lot of his Spiderman shows. He also plays with all his toys. These things usually take his mind off of things’’. Parents reported physical comfort, such as a soothing gentle touch or massage was the second most frequent method of coping for their child. One parent stated, ‘‘We also talk to her and use gentle touch to cope. Like rub her head and back. The nurses don’t like it so we do it when they are gone. It calms her down’’. Positive attitude also was important. For instance, one parent reported, ‘‘He (the child) has a very positive attitude. He is very consistent and likes to work hard. The therapist he works with says he is very determined’’. The third most frequent child coping factor identified by parents was the special therapy services (e.g. occupational therapy, psychotherapy) available at the children’s hospital. These additional therapy services were viewed by parents as being ‘‘value added’’ for the child and supporting his or her physical recovery as well as providing emotional support for the child. Parents also provided information about factors that were making coping difficult for their child. It is important to note that the majority of parents reported their child was coping well in the face of a significant
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Table 2. Positive child coping strategies Themes Staying active in order to distract from stressors
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Physical comfort from a loved one Keeping a positive attitude
Representative Quote from a Parent ‘‘Playing video games and watching movies. He gets to Skype with his classroom twice a day which keeps him interactive with his friends’’. ‘‘In the hospital, he is really comforted by being close to me or being rocked’’. ‘‘He looks at it as one big vacation. When he goes to the hospital to get treated he doesn’t complain and just keeps moving through. He just got diagnosed in November so things have been moving very quickly for him and he keeps a very positive attitude’’.
Table 3. Negative child coping strategies Themes
Representative Quote from a Parent
Being noncompliant about using medical equipment Strong negative emotional reactions
‘‘She’s pulled out her IV a few times and she’s pulled down her air tubes in her nose’’. ‘‘They have a hard time putting in her IV which hurts her, and prepping her for surgery is scary for her as well. When she gets upset I cannot calm her down’’. ‘‘He also cried a lot because he didn’t understand what was going on’’.
Lack of knowledge about his/her illness
illness, such as one parent who told interviewers, ‘‘Really there’s nothing that we can think of. She really is a perfect angel’’. However, three themes related to negative coping did emerge: (1) being noncompliant with medical procedures, (2) having strong negative emotional reactions, and (3) lacking knowledge about his/her illness and upcoming medical procedures which contributed to child stress. Themes and representative quotes are in Table 3. A common theme reported by parents was resistance to medical procedures, such as pulling medical tubes out. A key quote representing resistance was presented by a mother of a 4-year old boy receiving treatment for gastrointestinal problems, who reported that her son ‘‘cries and throws up; he resists and struggles when they are trying to do procedures’’. A mother of a 6-year old boy with Rasmussen Disease stated, ‘‘Sometimes we have to force him to take his meds’’. Some parents reported their child had strong, negative emotional reactions to medical procedures or being medically ill. These negative emotional reactions could result in some children becoming
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uncommunicative. An example of a quote representing parent concern over child anxiety was, ‘‘He gets a lot of anxiety over things he has to do, such as procedures, and it makes things so bad and more difficult. He has fears that something will hurt and so he builds up a lot of anxiety and the situation turns into a chaotic and painful situation’’. One mother of a 5-year-old girl described her daughter as shutting down by, ‘‘not talking about the illness and hospitalization. She eventually needs to process it’’. Another example of behavior that was thought to be due anxiety was, ‘‘she dramatizes things, makes them worse than what they are. This causes fights with the nurses sometimes’’. Another mother described her 12-year-old son as ‘‘getting down and feeling sad and depressed’’. When this occurred, her son stopped talking with others and became isolated and had even more difficulty dealing with his hospitalization. Negative reactions about being ill also involved sadness related to not being able to attend school and interact with family and friends. Negative reactions due to fear, largely related to the lack of knowledge the child had about the medical procedures, also were reported. DISCUSSION Results of this study provided some support for the Resiliency Model of Family Stress (McCubbin & McCubbin, 1991), as some risk and resilience factors were related to family hardiness. Specifically, results revealed that that higher numbers of parent-reported negative coping strategies exhibited by the child were related to lower family hardiness. Other researchers have also pointed to the adverse impact of negative child coping on both child and parental adjustment (e.g. Thomsen et al., 2002). Our findings also indicated that older age of the child with the chronic illness was associated with relatively lower levels of family hardiness. Older children may have had their illness for a longer period of time, and this may have a deleterious effect on the family. This may occur because these children may have had more critical incidents and hospitalizations which could reduce both their and their family members’ feelings of hardiness or efficacy for coping in the face of the child’s illness (Herzer et al., 2010). On the other hand, negative child coping strategies exhibited by the child could be connected with child emotional and behavioral problems, which can cause parental stress and then negatively impact family hardiness (Compas et al., 2012; Kazak et al., 2009). These ideas, however, are speculative in nature. Further research will be needed to examine the aforementioned ideas. It also is important to discuss the fact that several demographic variables were not related to family hardiness. For instance, findings did not reveal a significant relationship between number of child medical
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problems and family hardiness. This contrasted with the findings of previous research, showing that children with more medical problems had greater family stress and lower family functioning (Cohen et al., 2011). The children in the current study were experiencing acute distress related to undergoing medical procedures in the hospital, which may have over-shadowed the influence of number of conditions, in terms of influencing parent perceptions of family stress and hardiness. Additionally, child gender was not related to family hardiness. Research in this area is equivocal and continued study will untangle relations among child gender and family hardiness. Contrary to our expectations and findings of previous research (Herzer et al., 2010), family income was not related to family hardiness. It may be that hardiness is a robust concept, related to a ‘‘bounce back’’ attitude that is not dependent on family income. In terms of the relationship between child variables and family hardiness, increased numbers of child positive coping strategies were not associated with family hardiness. It may be that negative strategies and coping poorly are more important to family hardiness than positive coping, because viewing the negative strategies is upsetting to family members. This is an area for further study, and in-depth interviews may be a method for exploration of how positive and negative child coping strategies impact parents and other family members. It is important to remember, however, that parent reports of child coping strategies were used. Thus, child reports of their coping could have a different relationship with parent report of family hardiness. Parents’ reports of their own positive and negative coping strategies were not related to family hardiness. This could have occurred because family hardiness levels were high in relation to those reported in previous research (e.g. Corcoran & Fischer, 2013; McCubbin et al., 1996). If families were already fairly hardy, as was the case for this sample, then parent coping may have been relatively less important because all is going relatively well in terms of coping as a family. Thus, it may be that family adjustment and adaptation is often marked by resilience, as family members rally around the child to cope with a significant stressor (McCubbin et al., 1996; Nabors et al., 2013; Walsh, 2006). Qualitative coding of information in transcripts of the interviews indicated that parents reported many positive strategies exhibited by their child when he or she was coping with his or her illness or illness-related medical problems. Parents observed that their children often used distraction (e.g. playing games, watching TV, interacting with others on Skype) to positively cope with illness-related pain, medical procedures, or being ‘‘stuck’’ in the hospital. Similarly, Jaser & White (2011) reported that distraction could be positive, enhancing coping of youth
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with Type I diabetes. Through our observations at the RMH, this team has observed that interacting with peers and family on Skype may offer opportunities for social connection and support, which further buffer the child and family against negative thoughts and feelings. These interactions can promote feelings of efficacy, which would boost the resilience or hardiness of all family members. Skype or face time interactions with classmates may improve feelings of connection with classmates, allowing the child to maintain close ties with school, further boosting morale and positive feelings. Parents being able to physically comfort the child and the child’s positive and upbeat attitude were two other themes related to positive coping. Children whose parents reported that they employed positive coping strategies were resilient when facing stressors, which promotes their own positive attitudes as well as positive attitudes of other family members (Thomsen et al., 2002). Children also may benefit from gentle touch by or cuddling with their parents, which may improve their feelings of connection with parents (Field, 2014). Allowing physical connection with the child may improve parent attitudes and feelings of ‘‘closeness’’ with their child, thereby improving parent mood; this, in turn, may have positively impacted parent ratings, as child behavior effects parent well-being and perceptions (Ambert, 2013). Further study, perhaps using interviews may provide insights from parents about the key ways in which child attitude and being able to touch and physically comfort their child is critical to their perceptions of family hardiness. Avoiding or resisting medical procedures was a negative child coping strategy mentioned by some of the parents. Thomsen et al. (2002) reported that this negative coping was stressful for parents. When a child resists needle sticks and pulls out intravenous lines, he or she may be very afraid and may be increasing the pain and anxiety related to undergoing the procedures. Parents need to receive information to promote child coping with painful procedures. Coaching the parents and child on the use of relaxation and positive imagery may be one way to help children cope positively with medical procedures. Parents also reported that children who were experiencing significant anxiety could dramatize what was happening, causing even further anxiety and avoidance while experiencing medical procedures. This cycle could escalate, thereby negatively impacting child functioning and recovery. Referring children who are very reactive or dramatic for a brief counseling intervention, where parent and child learn to ‘‘dial down the drama’’ by practicing relaxation or using distraction, may help the child cope and in the long run this may be related to improved family hardiness. Nurses and other health professionals who are part of the ‘‘medical team’’ can teach children positive coping strategies that may
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improve their functioning and reduce the discomfort they feel related to medical procedures (McAllister & McKinnon, 2009). When a child’s coping remains negative and attempts to teach positive coping strategies are unsuccessful, it may be beneficial to refer the child for consultation or evaluation by a pediatric psychologist or social worker at the children’s hospital for additional support. Several factors may have limited the generalizability of our results. First, reliance on hardiness/resilience theory may have foreclosed the analyses, so that other factors such as hope and grief were overlooked. The other authors examining themes were not aware of the hardiness measure, which may have mitigated this shortcoming; but, this remains an area for further research. Second, children were undergoing medical procedures at a local hospital. As such, results might not generalize to families where a child has a chronic illness. However, hardiness ratings were high within the study participants, even though parents were in a very stressful situation. It may be that families are marked by resilience as they cope with their child’s chronic illness. As mentioned, this study relied on parent report of child functioning, and different results may have been obtained using child or observer report of child coping strategies. Moreover, the interview was brief and an in-depth interview would have yielded different results, or more comprehensive information on child coping. The majority of study participants were Caucasian and our findings do not address coping and hardiness for families from different ethnic and cultural groups. The sample size was small, which could have limited power to detect findings for interaction terms in the regression analysis. More information about child medical conditions and procedures would provide further insights into the history of child illness and medical procedures. This type of information would allow for an estimation of the severity of the child’s condition and procedures. This would be important to ascertain in future studies, because severity of the current hospitalization may impact parent perceptions. It may be difficult for parents to discuss the severity of their child’s condition. Hence, nurses and health professionals should watch for times when parents feel comfortable discussing their child’s history and their child’s coping so that they can glean information for intervention purposes. Study findings supported the importance of assessing child age and negative child coping strategies when determining family hardiness during a medical hospitalization. Findings provided some support for the idea that risk factors for the child are related to family hardiness. More information about the relations among protective factors and hardiness is needed. Perhaps other protective factors, such as extended family support, should be examined in future studies. Improving child coping skills and teaching positive strategies to replace more negative ones can
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reduce child anxiety and resistance to medical procedures and improve child coping with medical procedures, and this too could be positively related to family hardiness. Conceptualizing of the family as resilient has clinical implications, moving health professionals toward a more positive frame when intervening with families (Hawley, 2000). Nurses and health professionals may want to interview parents to determine whether older children are coping well, because, although they may have been to the hospital before, the stress of multiple hospitalizations and long-term coping with an illness could have accumulated, and children could be experiencing significant emotional distress. If this is the case, the child might need support or referral to cope with medical procedures and recover after experiencing them. Finally, we believe that further research is needed to determine reasons for gains and losses in family hardiness as the child progresses through different illness stages and different developmental levels for the child and his or her family members. Longitudinal studies to assess coping over time and in different situations will provide knowledge for health care professionals and can guide the development of interventions to promote family and child hardiness as the family and child adjust to the child’s chronic illness. DECLARATION OF INTEREST This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. The authors have no conflicts of interest to report. REFERENCES Ambert, A-M. (2013). The effect of children on parents: Second edition. New York, (NY): Routeledge. Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32, 19–31. Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127, 529–538. Compas, B. E., Jaser, S. S., Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Review of Clinical Psychology, 8, 455–480. Corcoran, K., & Fischer, J. (Eds.) (2013). Measures for clinical practice and research: A sourcebook, 5th Ed., Vol. 1. Couples, families, and children (p. 297). New York (NY): Oxford University Press.
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Dewey, D., & Crawford. S. G. (2007). Correlates of maternal and paternal adjustment to chronic childhood disease. Journal of Clinical Psychology in Medical Settings, 14, 219–226. Failla, S., & Jones, L. C. (1991). Families of children with developmental disabilities: An examination of family hardiness. Research in Nursing and Health, 14, 41–50. Field, T. M., Ed. (2014). Touch in early development. New York (NY): Psychology Press. Hawley, D. R. (2000). Clinical implications of family resilience. American Journal of Family Therapy, 28, 101–116. Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., Piazza-Waggoner, C., & Zeller, M. H. (2010). Family functioning in the context of pediatric conditions. Journal of Developmental and Behavioral Pediatrics, 31, 26–34. Jaser, S. S., & White, L. E. (2011). Coping and resilience in adolescents with type 1 diabetes. Child: Care, Health and Development, 37, 335–342. Kaczynski, K. J., Claar, R. L., & Logan, D. E. (2009). Testing gender as a moderator of associations between psychosocial variables and functional disability in children and adolescents with chronic pain. Journal of Pediatric Psychology, 34, 738–748. Kazak, A. E., Rourke, M. T., & Navsaria, N. (2009). Families and other systems in pediatric psychology. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology: Fourth edition (pp. 656–671). New York (NY): Guilford. McAllister, M., & McKinnon, J. (2009). The importance of teaching and learning resilience in the health disciplines: A critical review of the literature. Nurse Education Today, 29, 371–379. McCubbin, H., & Thompson, A. (Eds.), (1987). Family assessment inventories for research and practice. Madison (WI): University of Wisconsin-Madison. McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment: Resiliency, coping and adaptation: Inventories for research and practice. Madison (WI): University of Wisconsin Publishers. McCubbin, M. A., & McCubbin, H. I. (1991). Family stress theory and assessment: The resiliency model of family stress, adjustment, and adaptation. In H. I. McCubbin, et al (Eds.), Family assessment inventories for research and practice (pp. 127–133). Madison (WS): University of Wisconsin-Madison. Nabors, L. A., Kichler, J. C., Brassell, A., Thakkar, S., Bartz, J., Pangallo, J., Van Wassenhove, B., & Lundy, H. (2013). Factors related to caregiver state anxiety and coping with a child’s chronic illness. Families, Systems, & Health, 31, 171–180. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Thousand Oaks (CA): Sage. Thakkar, S. (2009). Parent and child coping for children with chronic illnesses and severe medical conditions. Cincinnati (OH): University of Cincinnati: Unpublished Senior Honor’s Thesis. Thomsen, A. H., Compas, B. E., Colletti, R. B., Stanger, C., Boyer, M. C., & Konik, B. S. (2002). Parent reports of coping and stress responses in children with recurrent abdominal pain. Journal of Pediatric Psychology, 27, 215–226. Walsh, F. (2006). Strengthening family resilience: Second edition. New York (NY): Guilford.
