Abstract
Background: Children with medical complexity (CMC) and their parents are affected physically and mentally during transitions in care. Coordinated models of care show promise in improving health outcomes.
Objective: The purpose of this scoping review was to examine research related to CMC and their parents and transitions in care. The aim was 3-fold: (1) to examine the extent, range, and nature of research activity related to the impact of transitions on physical and mental health for CMC and their parents; (2) to summarize and disseminate research findings for key knowledge users; and (3) to identify research gaps in the existing literature to inform future studies.
Methods: Twenty-three sources were identified through database searches and five articles met the inclusion criteria of CMC (multi-organ involvement or technology-dependent) (or parents of CMC) transitioning from hospital to alternate levels of care where outcome measures were physical or mental health-related.
Results: Numerical analysis revealed substantial variation in methodological approaches and outcome measures. Content analysis revealed two themes for parents of CMC during this transition: (1) emotional distress, and (2) high expectations; and three themes for CMC: (1) improved health, (2) changes in emotion, and (3) disrupted relationships.
Conclusion: The findings from this scoping review reveal for parents, transitions in care are fraught with emotional distress and high expectations; and for CMC there are improvements in quality of life and emotional health post- hospital to home transitions when collaborative models of care are available. This review serves as an early attempt to summarize the literature and demonstrate a need for further research.
Keywords: Children with medical complexity, CMC, transitions in care, physical health, mental health, caregivers.
Graphical Abstract
[http://dx.doi.org/10.1093/pch/18.10.518] [PMID: 24497777]
[http://dx.doi.org/10.1542/peds.2012-0175] [PMID: 23184117]
[http://dx.doi.org/10.1542/peds.2015-4434] [PMID: 27302979]
[http://dx.doi.org/10.3928/00904481-20140619-09] [PMID: 24977678]
[PMID: 12456952]
[http://dx.doi.org/10.1016/j.pcl.2005.03.007] [PMID: 16009262]
[http://dx.doi.org/10.1111/j.1553-2712.2000.tb00484.x] [PMID: 11073487]
[http://dx.doi.org/10.1542/peds.111.3.617] [PMID: 12612245]
[http://dx.doi.org/10.1001/archpediatrics.2011.74] [PMID: 21646589]
[http://dx.doi.org/10.1001/jama.2011.122] [PMID: 21325184]
[http://dx.doi.org/10.1016/j.acap.2017.07.005] [PMID: 28739535]
[http://dx.doi.org/10.1111/jocn.14360] [PMID: 29575208]
[http://dx.doi.org/10.1177/0009922812436884] [PMID: 22345634]
[http://dx.doi.org/10.1111/jspn.12225] [PMID: 30098124]
[http://dx.doi.org/10.1503/cmaj.141036] [PMID: 25316900]
[http://dx.doi.org/10.1080/08916930802354948]
[http://dx.doi.org/10.1136/qshc.2005.014605]
[http://dx.doi.org/10.1377/hlthaff.2014.0273]
[http://dx.doi.org/10.1097/XEB.0000000000000050]
[http://dx.doi.org/10.1016/S0140-6736(07)61602-X] [PMID: 18064739]
[http://dx.doi.org/10.1111/j.1365-2214.2008.00862.x]
[http://dx.doi.org/10.1111/j.1365-2214.2004.00393.x] [PMID: 15104576]
[PMID: 15121919]
[http://dx.doi.org/10.1177/1367493511430677]
[http://dx.doi.org/10.1186/1472-6963-12-366] [PMID: 23088792]
[http://dx.doi.org/10.1542/peds.2004-1689] [PMID: 15930188]
[http://dx.doi.org/10.15761/CCRR.1000227]
[PMID: 25929117]
[http://dx.doi.org/10.1007/s00431-014-2291-9] [PMID: 24610395]
[http://dx.doi.org/10.5334/ijic.3141]
[http://dx.doi.org/10.1097/01.NHH.0000343784.88852.94.]
[http://dx.doi.org/10.1016/j.ijnurstu.2017.04.011.]
[http://dx.doi.org/10.1037/h0089879]
[http://dx.doi.org/10.3928/19382359-20180221-02] [PMID: 29538782]
[http://dx.doi.org/10.1542/peds.2016-1581]
[http://dx.doi.org/10.1111/jocn.13941] [PMID: 28658513]