Siblings’ Experiences of Everyday Life in a Family Where One Child Is Diagnosed With Blood Cancer: A Qualitative Study

Abstract

Background: Childhood cancer not only presents challenges to the life of the child with cancer but also to the siblings' daily family life. The aim of the current study was to gain a better understanding of siblings' experiences of living in a family where one child has been diagnosed with blood cancer. Method: Ten siblings of children with leukemia or non-Hodgkin lymphoma completed a semistructured interview about their everyday family life experiences postdiagnosis. The verbatim transcripts of the interviews served as the data for an interpretative phenomenological analysis. Results: The results showed that overall the siblings experienced a continuity in many aspects of their family life: they still experienced their family as an important source of support and information/communication, as warm and loving and as a safe harbor where family members aim to protect each other. However, at the same time, the participating siblings also expressed that some things felt unmistakably different postdiagnosis: They felt that their family as a whole had been ripped apart, with a greater focus on the diagnosed child and changing responsibilities for each family member. Conclusion: This study informs parents and clinicians about the daily family life experiences from the siblings' perspective, a perspective that is often overlooked. A focus on challenges as well as continuities within family life, the wish for connection expressed by the siblings, and the uniqueness of every sibling's experiences is what can be taken away from this study by psychosocial workers in the field.

Family Members Dealing With Childhood Cancer: A Study on the Role of Family Functioning and Cancer Appraisal

“…In addition, when taking into account the family functioning subscales, there was a significant association between expressiveness and loneliness: the more family members can share their experiences within the family, the less loneliness in all family members. This finding illustrates the importance of family communication (Van Schoors et al, 2018a).…”

“…When considering the family functioning subscales, a significant association between expressiveness and parental quality of life; and between social orientation and children’s quality of life was found: the more a parent perceived his/her family as expressive and the closer a child is to his/her social environment (e.g., friends), the better his/her quality of life. These findings emphasize the importance of sharing experiences within the family, especially for parents (Van Schoors et al, 2018a) and with the social network, especially for children (McGrath et al, 2005; Beltrao et al, 2007). Furthermore, we found that – for all family members – cancer appraisal was related to quality of life: perceiving the illness as more uncontrollable and less manageable was related to worse quality of life, in parents and in children (patients and siblings).…”

“…As a consequence, the father’s daily activities stayed more or less the same as pre-diagnosis and potentially protecting him from catastrophizing about the illness as being unsurmountable. For siblings, however, the impact on their daily life is huge: from 1 day to another, they are confronted with less parental attention, the need to become more responsible and independent, and others (e.g., grandparents) taking over parental roles (Van Schoors et al, 2018a). These sudden and major disruptions of siblings’ lives may them feel more overwhelmed by the illness.…”

“…First, this is in line with the idea that parents – and especially mothers – may struggle to meet prevailing cultural values and standards of “good parenting”: while West-European parents are expected to divide their time and attention equally among all children, and love each child equally (Ganong and Coleman, 2017), these principles are challenged in the context of pediatric cancer and may result in parental feelings of guilt, shame, frustration and distress (Long and Marsland, 2011) and rating the family functioning as less adaptive. Second, the finding that mothers reported lower levels of organization and norms within their family, as compared to the children, makes sense, given the demanding character of the cancer treatment, e.g., isolation, invasive procedures and all obligations/responsibilities for the patient within his/her healing process, as well as the possible changes in the daily life of the siblings (Van Schoors et al, 2018a). However, our finding on family cohesion (i.e., siblings experienced more cohesion compared to mothers) is not in line with existing qualitative studies, showing that most parents and patients - but not siblings – experience an increase in family cohesion post-diagnosis (Prchal and Landolt, 2012; Van Schoors et al, 2015; Van Schoors et al, 2018a).…”

The family practice of support-giving after a pediatric cancer diagnosis: A multi-family member interview analysis

“…The present study is part of a larger ongoing study in Flanders (Belgium), examining the impact of a pediatric cancer diagnosis on families (see also Van Schoors et al, 2018, 2019. Using a purposive sampling strategy, children diagnosed with leukemia or non-Hodgkin lymphoma between the age of one and eighteen, their parents and any siblings were invited to take part in a longitudinal survey.…”