Pediatric Hematology and Oncology, 31:670–679, 2014 C Informa Healthcare USA, Inc. Copyright  ISSN: 0888-0018 print / 1521-0669 online DOI: 10.3109/08880018.2014.905666

ORIGINAL ARTICLE Psychosocial

Resilience in Families with a Child with Cancer Abraham Petrus Greeff, PhD,1 Alfons Vansteenwegen,2 and Annelies Geldhof2 1 2

Department of Psychology, Stellenbosch University, Stellenbosch, South Africa; Department of Psychology, Catholic University of Louvain, Louvain, Belgium

The aim of this study was to identify and explore resilience factors associated with family adaption after a child had been diagnosed with cancer. Using a cross-sectional survey research design, parents (n = 26), and children (n = 25) from the same families independently completed six selfreport questionnaires, as well as responded to an open-ended question about those qualities that helped their family through the period following the diagnosis. The most significant results came from the children’s data. According to these results, connectedness within the family, the experience of control over life events, family routines, positive, and supportive communication, redefinition of crisis situations, and lastly, a passive appraisal of crisis situations, were positively linked to better family adaptation. The identified factors should be strengthened and developed in families finding themselves in a similar situation. Keywords cancer, child, family, resilience

INTRODUCTION Family life changes drastically when a child suddenly falls seriously ill and is diagnosed with cancer. Between 2004 and 2009, a total of 2 973 cancers were diagnosed in children and adolescents (0–19 years) in eight pediatric centers for hemato-oncology in Belgium [1]. After diagnosis a period of anxiety and insecurity commences, not only for the child with cancer, but for the entire family [2–4]. However, families with a child with a chronic illness generally function well and show remarkable resilience [3]. The quality of family life has a direct impact on the quality of life of the sick child, and hence is of special importance [5]. Emphasizing, activating, and strengthening healthy family forces become essential goals of post-traumatic growth (PTG) [6]. Consequently, the aim of this study was to identify resilience factors that help families toward successful adaptation. The findings may be used to optimize existing health-care provision. Understanding family resilience in families that have children with cancer, and trusting in the strengths developed by these families, could lead to even more appropriate interventions by health-care professionals [3, 4]. Leukemia is the most widespread form of cancer in children [1], and most children diagnosed with leukemia are between two and twelve years old, with the incidence Received 21 October 2013; accepted 13 March 2014. Address correspondence to Professor Abraham Petrus Greeff, PhD, Stellenbosch University, Psychology, Wilcocks Building, Ryneveld Street, Stellenbosch, 7600 South Africa. E-mail: [email protected]

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peaking at ages between three and six years. Brain tumors, the second most common form of cancer in children [1], are usually diagnosed in children aged five to ten years [7]. The effects of cancer in children on the quality of family life are not necessarily purely undermining [4]. In research by Quin (2004), most parents studied indicated that their feelings for one another were either unchanged or had changed for the better. Moreover, the majority of parents reported that their family had become closer as a result of the disease and the treatment [8, 9]. In a study by Sloper (1996), most parents indicated at least one positive effect on the family [10]. These effects related to the strengthening of family ties and changes in family values, a lessening of materialism, appreciating children and partners more, being less concerned about minor problems, spending more time together, and engaging in more family activities [6]. Since the 1970s, many social scientists have changed their focus from the causes of diseases, deficiencies, and behavioral problems to answering the question, “what causes some people to remain healthy and perform well when confronted with risks and adversities, while others do not” [11]? A shift therefore took place from a pathogenic orientation to a salutogenic orientation, in which strengths, vitality, promoting health, and preventing disease are of central importance [12]. Evolving from these and other theoretical developments, the Resiliency Model of Family Stress, Adjustment, and Adaptation was formulated by McCubbin, Thompson, and McCubbin (1996) [13]. This model offers the theoretical basis for the study reported here. The Resiliency Model distinguishes two family processes that are related to each other and occur whenever a stressful life event takes place. On the one hand, there is the process of adjustment, during which the protective factors ensure that the family’s integrity and functioning are maintained. On the other hand, there is the process of adaptation, in which the recovery factors are influential [14–16]. Various general resilience factors exist, that is, factors that have both a protective and a recovery effect [17]. An open style of communication within the family during the entire treatment period is one of the most important predictive factors of the proper adjustment of all family members to cancer in children [9, 18, 19]. Families are often confronted with the reality that their crisis cannot be explained solely by means of reason or logic when a traumatic life event, such as cancer in a child, takes place. This may inspire a family to give meaning to their crisis, or even to justify it, on the basis of their religious convictions [17]. Religious beliefs provide parents with a cognitive system to give meaning to the disease experience [7, 9, 19]. Coping with crisis situations may also be described by means of a number of possible coping strategies. Examples of internally oriented coping strategies are denial, optimism, acceptance, and relying on religion. Gathering information, solving problems, and asking others for help are part of externally oriented coping strategies. Denial can be seen as a protection mechanism through which a person affords himself time to let the facts slowly sink in and to avoid being overwhelmed by them. A certain level of denial has been indicated by research to be functional, as it allows the family to make the necessary adaptations and to maintain a certain balance [20]. Walsh (2003) reckons that families that are able to assign a positive meaning to a chronic illness will adjust easier and eventually adapt to the situation [9]. Gathering information is seen as one of the most universal forms of coping with the disease and is considered very useful in adapting to it. Previous research has underlined the importance of different forms of information for parents with a child with cancer. Proper information therefore is of crucial importance to the wellbeing of the parents [21]. Various studies have revealed that social support may buffer or reduce the impact of a child’s life-threatening disease on the parents’ psychosocial functioning to C Informa Healthcare USA, Inc. Copyright 

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a great extent [10, 16, 22]. A significant relationship exists between the psychosocial adaptation to the disease at the time of treatment, and the perceived support from partners, friends, and family, doctors, and the parents of other children with cancer. This support provides parents with a break and allows them to perform other roles [3, 7, 9]. Continuity of life is very important for all family members, since the disease and the impact thereof on the child and his or her family are severe enough without continuous changes in personnel, houses, activities, and routines. Given the complexities accompanying a diagnosis of cancer, and the necessity to achieve a certain level of harmony and balance in the family, the objective of this study was to find answers to the following research question: Which sources of support and family qualities are associated with the adaptation of families with a child with cancer? MATERIALS AND METHODS A cross-sectional survey research design was used in this correlational study. Family adaptation was the dependent variable and resources and coping strategies were the independent variables in the operationalization of the Resiliency Model. A parent and a sibling of the diagnosed child independently completed a biographical questionnaire and six self-report questionnaires. Participants The families, who were from Belgium, had to fulfil the following criteria in order to participate in the study. First, the participating families needed to have a child diagnosed with cancer. The diagnosis originally was limited to leukemia and brain tumors. This specification was later left out because of the difficulties in reaching this limited sample group. Second, the diagnosis should have been made a minimum of six months and a maximum of two years previously [13]. A third criterion was that at least one of the children (a sibling of the diagnosed child) should have a minimum age of 12 years, as the questionnaires were considered too difficult for younger children. Initially, postgraduate psychology students at the Catholic University of Louvain were asked to identify a family with a child with cancer in their surroundings. An insufficient number of families were obtained because of the very specific criteria and the sensitivity of the topic. The assistance of two hospitals therefore was requested. The Gasthuisberg hospital of the Catholic University of Louvain and the Fabiola hospital in Antwerp were approached to assist with recruitment. They identified a number of families that satisfied the criteria. The seven families recruited by the students and the 19 families recruited through the hospitals comprised the final sample utilized in this study. Fourteen of the 26 participating families lived in Antwerp province, eight in Limburg province and three in the Flemish-Brabant province of Belgium. One family did not indicate their residential location. Concerning the parents, the questionnaire was completed by 18 mothers (69%) and seven fathers (27%). In one family, neither parent completed the questionnaires. The division according to gender of the children paralleled that of the parents, with 18 questionnaires completed by a daughter and four by a son. In three families the gender of the participating child was not provided, and in one family no child participated in the study. The ages of the participating parents varied from 36 and 53 years, with a mean of 44 years. The ages of the participating children fell between 12 and 24, with a mean of 18 years. In 24 families (92%) the parents were married, on average for a period of 21 years. In only one of the participating families were the parents divorced, and in one family the marital status was not revealed. Most families had two (n = 12) or three (n = 10) Pediatric Hematology and Oncology

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children. Two families had four children and two families did not reveal how many children lived at home. In all the households, only members of the nuclear family unit were resident in the home. Most of the parents who completed the questionnaires had completed a technical degree (n = 12) or a university degree (n = 7). Less data was available on families in which the parents’ educational level was university (n = 3) or high school without a university degree (n = 3). All the parents had obtained an education beyond primary school level. Most of the participating parents were either in a service (n = 8) or public administration (n = 7) profession, while some of them were laborers (n = 4) or unemployed (n = 3). One parent was self-employed and three parents did not indicate their profession. The subdivision of the partners’ professions was similar, except that only four partners were in service professions and four were in managerial professions. Most of the participating families’ net income fell between 15,000 and 25,000 Euros per year (n = 9), followed by those earning 35,000 to 45,000 Euros per years (n = 5). Families with a net income of less than 15,000 Euros, as well as those earning more than 45,000 Euros per year, were not as well represented in this study. Six families failed to provide their estimated annual net income. In 2013, the minimum wage for Belgium was 18,000 Euros per year – the second highest for a European country [23]. Every participating family had a child that had been diagnosed with cancer six months to two years prior to the time of data collection. Nine families had a child with leukemia and three had a child with a brain tumor. Bone cancer and lymphatic cancer were each present in one family. The specific diagnosis of the child with cancer was not given by 12 families. Instruments Variables such as marital status, family composition, gender, age, and income were measured with the biographical questionnaire. An open-ended question required the respondents to relate what they themselves had lately experienced to be their most important source of support, or the strengths that had aided the family in getting though the crisis situation. After completing the biographical questionnaire, the participants were requested to complete the following six self-report questionnaires: Family Crisis Oriented Personal Evaluation Scales (F-COPES), Relative, and Friend Support Index, Social Support Index (SSI), Family Time and Routines Index (FTRI), Family Hardiness Index (FHI), and the Family Attachment and Changeability Index 8. A brief discussion of the measures is provided in the Appendix. Procedure The students who recruited families made appointments and asked for the presence of a parent and the child who would participate in the study. After the aim of the study was explained and informed consent had been obtained, the parent and child were asked to complete the questionnaires in the presence of the student. Seven completed sets of questionnaires were returned to the researcher by the students. Ethical clearance to conduct this study was obtained from the University of Louvain’s Ethical Research Committee. Participation in the study was voluntary. Explanatory letters (providing information about the research project and the granting of informed consent) were included with the two sets of questionnaires for the families that were identified by the two hospitals. All the participants who agreed to participate were asked to read and sign an informed consent form. As requested in the accompanying letters, the questionnaires were returned anonymously to the Psychology Department’s student secretariat by means of a self-addressed stamped envelope. Nineteen families that satisfied the criteria sent back their questionnaires. Ten of the 29 families that were identified by the hospitals did not send back their questionnaires. No C Informa Healthcare USA, Inc. Copyright 

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differences with regard to family composition or location could be detected between the families that took part in the study and those that did not return their questionnaires. In total, 26 families’ data were obtained. Statistical Analyses Two correlational techniques were used for both the parents’ and the children’s data sets. First, Spearman correlations (to guard against the effect of possible outliers) were calculated to investigate univariate relationships. Second, best-subset multiple regression analyses were done. The “best” 20 models were chosen and scrutinized to identify which independent variables were identified the most in these 20 best models. RESULTS The aim of this study was to identify family characteristics associated with family adaptation. Spearman correlations between family adaptation (FACI8 scores) and the independent variables were calculated for both the parents and the children, and are presented in Table 1. From Table 1 it can be seen that, according to the children’s data, the following significant correlations exist between the measured variables and family adaptation: family hardiness, commitment in the family, control over life events, family time and routines, a passive stance toward crises, and the family’s ability to redefine a crisis, while positive communication patterns in the family correlated significantly with family adaptation according to both the parents and the children. The significant negative correlation found for incendiary communication further supports the importance of warm and supportive communication patterns. These (positive) significant correlations are considered resilience factors that are associated with family adaptation.

TABLE 1 Spearman Correlations Between Measured Family Characteristics and Family Adaptation Support sources within the family Family hardiness (FHI total score) Commitment—(sense of internal strengths, dependability, and ability to work together) Control—(sense of being in control of family life rather than being shaped by outside events and circumstances) Challenge—(efforts to be innovative, active, to experience new things and to learn) Family time and routines (FTRI total score) Communication (FPSC) Affirming communication Incendiary communication Seeking support from relatives and friends (RFS) Social support (SSI) Family coping strategies (F-COPES) Obtaining social support Passive appraisal of crises Seeking spiritual support Mobilizing support Redefining crisis situations ∗

Parents (n = 25) r

Children (n = 25) r

0.24 0.31

0.57∗∗ 0.49∗∗

0.16

0.59∗∗

0.15

0.21

0.26 0.21 0.51∗∗ 0.62∗∗ −0.37 −0.02 0.00

0.51∗∗ 0.34 0.72∗∗ 0.71∗∗ −0.59∗∗ −0.05 0.31

−0.02 0.14 0.14 0.23 0.24

−0.06 0.40∗ 0.09 −0.09 0.45∗

P ≤ .05. P ≤ .01.

∗∗

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TABLE 2 Summary of Regression Analysis Indicating Which Variables Contribute towards Variance in Family Adaptation (FACI8) for the Parents (n = 25) and the Children (n = 25) Parents Variable Social support (SSI) Mobilization of the family (F-COPES) Family problem solving communication (FPSC) Redefining the problem (F-COPES) Passive appraisal of problems (F-COPES)

Children

B

P

−0.08 0.26 0.65

.34 .11

Resilience in families with a child with cancer.

The aim of this study was to identify and explore resilience factors associated with family adaption after a child had been diagnosed with cancer. Usi...
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