What about us? Children's experiences of living with a sibling with spinal cord injury

Abstract

Spinal cord injury is a life transforming condition that is thought to have an impact on the entire family of the affected individual. The needs and psychological outcomes of siblings of children with spinal cord injury (SCI) have not been researched. The current study focuses on the experiences of children living with a brother or sister with SCI. Eight participants (4 male, 4 female) aged between 7 and 18 years were interviewed using a semi-structured interview, concentrating on their unique experiences and understandings of having a brother or sister with SCI. The qualitative method of Interpretative Phenomenological Analysis (IPA) was used to analyze the data and three main themes were identified: "Life interrupted", "What about me?" and "My safety net". Results are discussed in relation to attachment and coping and adjustment theories. The discussion also highlights the clinical implications for siblings and parents of children affected by SCI, and for professionals who work within pediatric SCI settings.

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

“…This research is additive to understanding family perspectives on unmet needs, as well as involving families in helping to shape research studies and health care programs [50][51][52]. In addition to the need for the development and evaluation of a variety of pediatric caregiver-focused interventions, this research adds to the calls for more service and research attention on families [3,4,14,15] including youth who live with chronically ill siblings [4,53,54].…”

“…Challenges associated with caregiving across a variety of chronic illnesses and disabilities are widely documented and include the toll on caregiver physical and emotional health and quality of life (QOL) [2]. Attending to the complex health and unmet needs of caregivers is vital to the overall health of the caregiver, as well as the functioning of the child and the entire family unit [3][4][5][6][7]. Lazurus and Folkman's stress and coping model [8] and Pearlin and colleagues' stress process model [9,10] examine the nature of stressors and how internal resources (e.g., coping) and external resources (e.g., social support) can influence how stress impacts health and well-being.…”

A systematic review of how spinal cord injury impacts families.

“…In regard to family adjustment, studies generally suggested that family members are able to adjust appropriately to life post-SCI (Alexander et al, 2002; Buck & Hohmann, 1981; Killen, 1990). One study, which was not included in the systematic review due to its focus on relationships of able-bodied siblings with siblings with SCI (Akhtar et al, 2012), identified three themes supported by older siblings: “Life interrupted” encompassed significant change in siblings’ lives, “What about me?” reflected the personal and psychological impact on the sibling, and “my safety net” illustrated protective factors. Thus, there may be differences in adjustment among family members, with siblings of a family member with SCI having more difficulty adjusting (Akhtar et al, 2012).…”

“…reflected the personal and psychological impact on the sibling, and "my safety net" illustrated protective factors. Thus, there may be differences in adjustment among family members, with siblings of a family member with SCI having more difficulty adjusting (Akhtar et al, 2012).…”

Pediatric Spinal Cord Injury: Recognition of Injury and Initial Resuscitation, in Hospital Management, and Coordination of Care

“…93 SCI can have an important effect on the family of patients. In a study of siblings of patients with SCI, Akhtar et al 94 described feelings of neglect by parents as well as guilt for not being able to care for the sibling patient. However, in family units that remained intact, and in which a positive outlook was maintained, these feelings were mitigated.…”