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

Author(s): Edelstein, H., Schippke, J., Sheffe, S., Kingsnorth, S.

Published In: Child Care, Health and Development, 43 (3): 323-333

Study Aim/Purpose: The authors conducted this review to identify and describe the full range of published studies on interventions for reducing the stress of caregivers of children with medical complexity (CMC). 

Summary of Methods: The authors conducted a broad systematic “scoping” review of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Ovid Medline, and Embase to identify English language articles published between January 2005 and February 2016 on interventions for familial caregivers of children ages 1-24 with medical complexity. Hand searching of key articles and a general internet search for peer-reviewed articles on the subject were also conducted. Given that there is no common diagnosis defining children with medical complexity, search terms such as complexity, multiple comorbidity, fragility, technology and/or ventilator dependent were used as proxies. 

Summary of Key Results (related to studies of effectiveness): Forty-nine studies met the criteria for inclusion. These studies focused on six domains of interventions: care coordination models, respite care, telemedicine, peer and emotional support, insurance and employment benefits, and health and related supports. Across studies there was a wide range of intervention designs, outcomes, and measures used. Eight studies examined respite care for CMC that provide in-home nursing care or out-of-home hospice-type services. Studies found significant reductions in parental stress and increases in how parents were able to cope with caregiving duties if they received breaks from respite services along with assistive technology. At the same time, one study found the benefits of respite were negated if the respite care provider was not familiar and knowledgeable of the child’s needs. Several qualitative studies explored parental perceptions of different respite models and concluded that building trust was a key concern of family caregivers if the same staff were not consistently assigned to a family or if access to services was not dependable. 

Limitations of Studies Reviewed (as cited by the author): The authors noted that their ability to summarize findings from the review was limited because of the studies’ small to medium sample sizes. Additionally, they suggest their search may have missed some published work if the target population of CMC and outcomes were not well described. 

Authors’ Discussion/Conclusions: The authors conclude that published studies show there is promise for reducing the stress of families who care for CMC. They suggest that a combined intervention approach, rather than a single approach, may be most effective in improving family caregiver outcomes and that research is needed to determine which combination of domains are most effective to reduce the burden of care as well as “what works best for whom and when.” They also recommend future studies to measure long-term stress reduction and impacts on family members beyond the maternal caregiver. The authors close by highlighting the importance of larger scale experimental design studies, while recognizing that such studies will be methodologically challenging.