Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children.

Abstract

Using family systems theory as a theoretical framework, we investigated direct and indirect associations between type of disability, caregiver burden, and sibling relationships with structural equation modeling. We recruited 172 families raising typically developing children or a child with a disability. Participants volunteered at meetings and workshops for families of children with disabilities and were also recruited through snowball sampling. Mothers and fathers independently completed self-report questionnaires on caregiver burden and perceptions of the sibling relationship. Mothers experienced higher levels of caregiver burden than fathers. Parents of children with autism reported higher levels of caregiver burden than parents of typically developing children. Mothers of children with Down syndrome and multiple disabilities reported more positive sibling relationships than mothers of typically developing children. Mothers' and fathers' perceptions of caregiver burden were negatively related to their perceptions of the sibling relationship. Caregiver burden mediated the relationship between having a child with autism and positive sibling relationships. Results indicate the benefits of using a systems framework in examining families raising children with disabilities. Future research should focus on interventions for families of children with disabilities that help alleviate parental burden and foster positive sibling relationships.

The Views and Experiences of Fathers of Children with Intellectual Disabilities: A Systematic Review of the International Evidence

“…The presence of a child with ID may enrich the family and can bring experiences of joy and pride (Dyches, Smith, Korth, Roper, & Mandleco, 2012;Nurullah, 2013). However, for some families, there are issues related to initial shock and adjustment, stigma and coping with negative attitudes, the effects on siblings, sleeplessness, relationship strain, and financial and employment implications (Cantwell, Muldoon, & Gallagher, 2015;Hayes & Watson, 2013;Roper, Allred, Mandleco, Freeborn, & Dyches, 2014;Saunders et al, 2015). From the perspective of mothers, experiences are often positive (Horsley & Oliver, 2015).…”

Interação fraternal quando um irmão tem síndrome de Down: Um estudo observacional

“…A partir da análise dos dados observacionais, é possível concluir que as interações entre os irmãos nas famílias investigadas são caracterizadas como positivas, conforme indica a literatura (ROPER et al, 2014;SENNER;FISH, 2012;STONE-MAN, 2005). Os resultados deste estudo demonstram que a qualidade da interação é caracterizada por 'Sincronia' e 'Amistosidade', bem como que a estrutura de participação nas atividades é predominantemente 'Conjunta', corroborando os estudos brasileiros que utilizaram metodologia observacional e o mesmo sistema de categorias utilizado neste trabalho (GRISANTE; AIELLO, 2012; PEREIRA-SILVA, 2003).…”

Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

“…Gender of the parent. Many studies have reported that mothers are the primary caregivers of children with disability (Gray, 2003;Roeher Institute, 2000a) and that mothers report more caregiving burden compared to fathers (Gray, 2003;Hedov et al, 2000;Roper, Allred, Mandleco, Freeborn, & Dyches, 2014). In addition to other workforce and domestic responsibilities, Leiter et al (2004) estimated that mothers spent at least 20 h/week providing support to their child with a disability.…”