Care maps and care plans for children with medical complexity

Abstract

IntroductionThe support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP‐directed care and patient‐ and family‐centered care (PFCC).MethodThis study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis.ResultsData analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps.DiscussionCare plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.

Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity

“…Rereferral for clinical genetics assessment should be considered for older children and teenagers with unexplained medical complexity who have not undergone genome-wide sequencing. Additional recommendations to improve the integration of genomics into the care of CMC include representation in care maps and care plans, 30 , 76 review of prior clinical genetic testing results at each visit, inclusion of a genetics health care professional in multidisciplinary case review, and periodic consideration of the role for further genetic testing (for fully or partially undiagnosed patients) or of the potential implications for management and opportunities to participate in rare disease research (for diagnosed patients). Trio genome-wide sequencing is associated with a higher diagnostic yield than only the proband undergoing sequencing, 23 and in our study facilitated novel disease gene discovery.…”

Effect of Educational Intervention Based on Self-Efficacy Theory on The Caring Behavior of Mothers Having Children with Cancer

“…Given this con dence, the ability to increase their ability to cope with a variety of challenges will be relatively easier. Thus, as a hypothesis, this sense of con dence for success in solving the challenge is associated with lower levels of negative emotional reactions both before and after intervention [37][38][39].…”

Health Care Use and Costs of Children, Adolescents, and Young Adults With Somatic Symptom and Related Disorders

“…26 , 35 Yet, unlike their peers with complex medical conditions, these children, adolescents, and young adults have not been subject to the same health system responsiveness for care navigation, coordination, and interventions. 35 , 36 , 37 , 38 , 39 Costs related to SSRDs are high in hospitalized adults in Italy, with mean annual per-patient costs of €47 540. 9 In both inpatients and outpatients in Holland, mean direct and indirect costs were estimated at €6815 per patient per year.…”