Perspectives on caring for the child and the caregiver

Abstract

EDITORIAL Perspectives on caring for the child and the caregiverCaregiving is a normative aspect of parenting; however, providing care for a child with a chronic medical condition or lifelong disability comes with unique expectations, needs, and challenges. 1 The medical condition or disability necessitates more hands-on care, coordination of educational services and long-term needs, as well as greater physical, emotional, and financial participation than caring for a typically developing child. These demands affect both the individual life paths of family members and the entire family system. Families are faced with stresses associated with medical uncertainty, shifts in family roles and responsibilities, changes in daily routines, and social isolation. Financial burden extends from the cost of treatment regimens to changes in employment status of the caregivers as a function of care.2 The toll is compounded in families who are socio-economically disadvantaged and have limited resources. But caregiving is also a multidimensional experience associated with benefits, such as personal growth and positive meaning-making. 3As pediatric healthcare providers, an integral and critical component of our comprehensive management of young people must encompass the primary caregivers and the family. Research shows the connection between caregiver wellbeing (physical and mental) and child functioning.4 Consequently, failure to detect and address caregiver and family distress may lead to further decline in the caregiver, child, and family placing additional burden on the local community and larger healthcare system. As professionals, we are in a unique position with families when caring for their child; we are bestowed with long-term trust, affording us opportunities to identify caregiver and family distress, provide support and guidance, and monitor change over time.The impact of children's healthcare needs on the caregiver has been demonstrated; however, the salient features of this relationship are less clear. Moreover, less is known about the impact on other family members, such as siblings. Our field is actively working towards identifying mediators and modifiable factors linking caregiving and family functioning and child/caregiver outcomes. A critical next step is developing multilevel interventions targeting these variables: interventions that are feasible to implement, adaptable to a variety of situational factors, and easy to integrate into the already busy daily lives of families. More research is needed on the mode of delivery of evidence-based interventions (e.g. face-to-face, Web-based) and the condition-specific and cultural needs of the child and family. 5There is a myriad of challenges facing caregivers and families. What happens when pediatric patients become adults, when their own caregivers need caregiving? With advances in medicine and technology, survival rates are increasing. Technology also requires ongoing access health services and increased need to provide round-the-clock specialized services in the...

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

“…The issue of therapy-related parental stress requires further attention in order to advance paediatric rehabilitation and its evidence base. This is supported by a recent editorial of Zebracki [30], advocating to treat paediatric patients within the context of the family system, and to consider the well-being of the caregiver. One of the aims of this article is to stimulate awareness of the phenomenon of therapy-related parental stress.…”