Childhood chronic disorders (CCDs) affect numerous families worldwide. The United Nations Children’s Fund (2013) provided a global estimate that indicated that one in every twenty children lives with a CCD. From the perspective of family systems theory, a CCD affects all family members, including typically developing siblings [herein; siblings]. An elevated risk for psychological adjustment problems in siblings compared to norms has been documented. However, there is little knowledge concerning efficient interventions that promote mental well-being in this population and no evidence-based sibling intervention currently exists. There is also a lack of formal or legal recognition of siblings as caregivers or children as next of kin. In Norway, the country of the current study, only recently (i.e., as from 2018) have siblings been included in The Health Personnel Act imposing a duty on Norwegian health care services to provide information and support to children as next of kin. In a global context, however, such a formalization of siblings’ rights is still nonexistent. This thesis concerns the siblings of children with CCDs, who represent an underattended at-risk group of children and youth. In order to inform clinical practice about useful services for siblings, more insight is needed into siblings’ experiences and the possible moderators and mediators of the effects of growing up with a CCD in the family.
The main research goals of this thesis include expanding the knowledge of siblings’ experiences and adding to the development of evidence-based sibling interventions by focusing on the quality of parent-sibling communication, which is postulated as a mediator for sibling adjustment. In this way, the thesis contributes to the understanding of siblings’ experiences and needs anchored within a family system perspective.
This thesis contains a qualitative inquiry of siblings’ self-reports and examines the nature, contexts of, and coping with emotional experiences among a particularly understudied group, that is, siblings of children with rare disorders. Further, the thesis evaluates the initial acceptability, feasibility, and possible beneficial outcomes of a novel manual-based intervention, “SIBS”, for siblings and parents. The development of the SIBS manual proceeds from a transdiagnostic approach and was deliberately designed to be of brief duration, in order to increase its feasibility and acceptability in families under considerable strain. The SIBS intervention is innovative in the way that it involves an active parental component and directly targets communication within the parent-sibling dyad. Thus, the present thesis additionally assesses the feasibility of this novel component by examining the emotional parent-sibling communication that occurred during the intervention. Through observational investigations of how and to what degree parents put the psychoeducative material taught into practice, the thesis aims to inform further development of the intervention manual.
The results of this thesis suggest, in line with previous research, that the sibling experience is complex and multifaceted. The sibling participants reported experiencing a range of different and often contradictory emotions associated with the effects of the CCD on the family system, and seemed to face the dilemma of whether to hide or share their emotions with their significant others, such as parents. The evaluation of the SIBS intervention provided encouraging results in terms of preliminary evidence of user satisfaction, the feasibility of the intervention design, and positive outcomes in terms of strengthened parent-sibling communication, a decreased problem burden, and increased CCD knowledge in siblings. A subsequent proposition is that siblings may benefit from approaches that seek to increase siblings’ understanding of their own situation and which aim to empower parents in practicing child-centered communication with siblings.
This thesis identifies directions for future sibling intervention research and, in the long term, the findings of this thesis may contribute to informing health care services and policy makers about potentially efficient ways to support sibling needs in order to diminish the impact of a CCD, that is, by promoting resilience and preventing the development of psychological adjustment problems in siblings. The main conclusions of this thesis are that both clinicians, researchers, as well as the siblings’ social networks must acknowledge the complexity of siblings’ experiences and that strengthening parent-sibling communication is likely to represent a meaningful way of supporting siblings in their roles as next of kin.