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

Abstract

Purpose: Pediatric cancer presents many challenges to the life of the child diagnosed with cancer and his/her family. Among the studies investigating risk and protective factors, social support has emerged as an important construct. However, little is known on how family members support each other in this particular context. Method: In order to further explore this process, interviews were performed separately with mothers, fathers and siblings. For the purpose of this study (as this is part of a larger project), data from four families in which both parents and at least one sibling participated, were used. Multi Family Member Interview Analysis was used as the methodological framework to analyze the individual interviews, allowing a detailed and systematic analysis of shared family experiences. Results: The analysis of the data revealed three themes: Being together matters: the families identified the need of being physically together; Finding support in (not) talking: the complexity of sharing emotions was explained and Working together as a team: the families described working together as a team in order to get everything organized.Conclusions: This study broadens our understanding of the interpersonal process of family support-giving when facing pediatric cancer. When meeting with families, families should be invited as a unit in order to best capture family level experiences. Also, clinicians should be sensitive to the different cancer-related communication needs within the family (i.e., the need to talk or not to talk) and incorporate this knowledge into their care.

How Does Social and Work Life Change for Fathers of Children With Cancer?

“…Consistent with the literature, healthy siblings were often separated to stay with extended family (Enskär et al, 2010; Nicholas et al, 2016; Norberg & Steneby, 2009), which often resulted in parents having inadequate time for healthy children (Patterson et al, 2004), decreased family time (James et al, 2002), and feeling guilty about not giving more attention to them (Peikert et al, 2020). The findings are consistent with the literature, which has highlighted how the family’s need to be physically together as one unit is often neglected during treatment (Van Schoors et al, 2020). Family separation with two subsystems of the mother and sick child and the father and siblings (Long & Marsland, 2011) seems to be inevitable, because parents desired not to leave a child who is being treated for cancer alone, but they also had to pay for living expenses and the child’s treatment.…”

Social support and siblings of children with cancer: A scoping review

“…One study looked at how the family members themselves support each other, 72 identifying that families flex their roles providing different types of support than they had previously in order to create a sense of strength and family cohesion. Some families reported difficulties discussing sensitive issues such as death or relapse causing reduced emotional support; however, companionship with family members seemed to alleviate this distress.…”

“…Higher parental awareness was found to be related to closer parent and sibling relationships prediagnosis, and parents' ability to problem solve to provide instrumental support, address sibling needs, and offer emotional support. 37 One study looked at how the family members themselves support each other, 72 identifying that families flex their roles providing different types of support than they had previously in order to create a sense of strength and family cohesion. Some families reported difficulties discussing sensitive issues such as death or relapse causing reduced emotional support; however, companionship with family members seemed to alleviate this distress.…”

"Cambia la vida de un día para otro”: Experiencias de madres y padres al cuidado personal de un hijo/a hospitalizado por cáncer

“…(23,24) Dentro de los hallazgos reportados en este estudio destaca que la visión de la propia corporalidad y del espacio interno de madres y padres fue olvidado en pos del cuidado del niño/a, lo cual se puede vincular a la evidencia actual que muestra que el cuidado de un niño con cáncer se asocia a mayores síntomas depresivos en padres y madres, (25,26) síntomas de estrés postraumático (27) e incluso que la carga de cuidado impacta su calidad de vida. (28)(29)(30) En esta investigación madres y padres relatan que la hospitalización tiene efectos en el entorno familiar cercano; este resultado también ha sido expuesto por otros autores que enfatizan que la familia experimenta una ruptura marcada por el cambio de roles y el distanciamiento físico, (31) y que esto provoca también que los hermanos se sientan aislados durante la etapa de hospitalización. (32,33) Por esto, si bien el niño/a y su cuidador/a sufren los efectos directos de la hospitalización, la familia sufre efectos indirectos, (30,34) lo cual quedó en evidencia al analizar los cambios en la relacionalidad del mundo vida que devela cómo las relaciones con los integrantes de la familia fuera del hospital se ven afectadas.…”