Evidence-Based Practice with Families of Chronically Ill Children: A Critical Literature Review

Abstract

A chronically ill child is financially, emotionally, and physically demanding on the family system. Although researchers have identified a plethora of risks, stressors, and needs of the families with a chronically ill child, there is a scarceness of evidence-based interventions in the existing literature. The purpose of the authors in this study was to critically analyze current treatment and identify the gaps in the available research. Findings revealed that there is a lack of support for empirically tested interventions that can help parents, siblings, and families of chronically ill children. The issues raised within this literature review bring attention to the need for shifts in research from exploratory to evidence based in order to successfully achieve more effective care.

The Disability Paradox Revisited: Quality of Life and Family Caregiving in Pediatric Cerebral Palsy

“…positive adaptation following or coexisting with adverse circumstances) (Ha, Hong, Seltzer, & Greenberg, 2008); second, such emphasis could improve the adequacy and specificity of current intervention practices, for which a scarceness of evidence-based literature has been acknowledged (Anderson & Davis, 2011). Additionally, research on this topic is urgently needed because the quality and amount of care provided by these parents to their children represents a significant reduction of public healthcare costs; however, deterioration of their QL may have serious negative consequences such as decreased work productivity, increased healthcare costs for the caregiver, and impairment of their child's adjustment (Davis et al, 2010;Hatzmann, Maurice-Stam, Heymans, & Grootenhuis, 2009).…”

Children with medical complexity: a scoping review of interventions to support caregiver stress

“…Raising a child with an acute or chronic health condition requires families to act in multiple roles and take on additional duties, placing them at a heightened risk for stress and burnout (Anderson & Davis ; Carnevale et al . ; Peckham et al .…”

“…Raising a child with an acute or chronic health condition requires families to act in multiple roles and take on additional duties, placing them at a heightened risk for stress and burnout (Anderson & Davis 2011;Carnevale et al 2008;Peckham et al 2014). While family caregivers are often defined as those with parental or legal responsibilities, all members may be called on to share in care responsibilities (Barlow et al 2012).…”

“…While family caregivers are often defined as those with parental or legal responsibilities, all members may be called on to share in care responsibilities (Barlow et al 2012). The scope of stress experienced by families as they come to terms with a new reality of parenting following a child's medical diagnosis is well described in the literature (Anderson & Davis 2011;Ratliffe et al 2002). Stressors may include substantive emotional, psychological, social and financial struggles arising from the amount of time and responsibilities dedicated to their caregiving role as well as strain from marital and family pressures (Berry et al 2013;Rehm 2013;Toly et al 2012).…”

The Nursing Dimension of Providing Palliative Care to Children and Adolescents with Cancer

“…Other techniques such as music therapy,66 distraction, and guided imagery should be combined with medications to provide the child and family strategies to control pain 67. Often families will have insight into the things that comfort their child, and this input should be encouraged, as it not only helps the child but may also provide the family comfort 68. Better bereavement outcomes (including enhanced family cohesiveness as well as decreased anxiety, stress, and depression) have been reported by parents who were actively involved in the care of their child 69.…”