Care Maps and Care plans for Children with Medical Complexity
medical complexity; care maps; care plans
Abstract Introduction The support of families in the care of children with medical complexity (CMC) requires the integration of health care provider (HCP) 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 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). Method This 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. Results Data 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: 1) Utility of care plans and maps; and 2) Intersection of care plans and care maps. Discussion Care 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.
Adams S; Nicholas D; Mahant S; Weiser N; Kanani R; Boydell K; Cohen E
Child: Care, Health and Development
2018
<a href="http://doi.org/10.1111/cch.12632" target="_blank" rel="noreferrer noopener">10.1111/cch.12632</a>
Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement
caregivers; children with special health care needs; gastronomy tube; nutrition
OBJECTIVES: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it. METHODS: Families presenting for initial consultation about g-tube placement completed the decisional conflict scale (DCS) at 1 or 2 of 3 time points: before consultation, after consultation, and after viewing a video. The decision support consultation was a 2-hour structured meeting with a pediatric hospitalist, nurse practitioner, and dietitian that was focused on clarifying the indication, feasibility, safety, and family values around tube placement. The video described decision-making and lived experiences of families with tube feeding. RESULTS: We measured the decisional conflict of 61 caregivers. Preconsultation decisional conflict scores were high (mean = 38.7), but there was substantial variation between families (SD = 19.4). Baseline scores did not vary between clinically relevant subgroups. Postconsultation DCS scores were lower (17.9 and SD = 13.5 for consult alone; 12.7 and SD = 13.2 for consult with video). Three caregivers (7.7%) of families had residual decisional conflict scores >37.5, the threshold conventionally associated with decision delay. CONCLUSIONS: Measuring decisional conflict among caregivers deciding about pediatric g-tube is feasible during the clinical encounter. Residual decisional conflict after our institution’s current decision support consultation model (with or without an additional video) was low, so development of an additional structured decision aid is not warranted. Further study of preconsult DCS variability across different clinical subgroups may help identify families benefiting from additional decisional support.
Nelson K E; Oppedisano S; Patel M L; Mahant S; Cohen E
Hospital Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Core outcome set for children with neurological impairment and tube feeding
gastrostomy; Pediatrics; neurological impairment; tube feeding; gastrojejunostomy; core outcome set
AIM: To develop a core outcome set (COS) for evaluating gastrostomy/gastrojejunostomy tube impact in children with neurological impairment. METHOD: Healthcare providers/researchers and caregivers rated the importance of candidate outcomes on a 5-point Likert scale. Outcomes rated 'somewhat important' or 'very important' by most (>/=85%) respondents were voted on during a consensus meeting. Outcomes that reached consensus for inclusion were ratified and assigned to Outcome Measures in Rheumatology filter core areas. The COS was validated in a separate group of caregivers. RESULTS: Twelve outcomes were selected from 120 candidate outcomes to form the COS. These included five 'Life Impact' outcomes, three 'Pathophysiological Manifestations' outcomes, two 'Resource Use' outcomes, one 'Growth and Development' outcome, and one 'Death' outcome. INTERPRETATION: We developed an evidence-informed and consensus-based COS for use in studies of gastrostomy/gastrojejunostomy tube feeding in children with neurological impairment. Implementation of this COS will help reduce heterogeneity between studies and facilitate evidence-based decision-making. WHAT THIS PAPER ADDS: Caregivers, healthcare providers, and researchers ranked the importance of 120 outcomes. Twelve core outcomes were identified as essential to measure in future clinical research studies.
Joachim K C; Farid-Kapadia M; Butcher N J; Chee-a-tow A; Monsour A; Cohen E; Mahant S; Guttmann A; Offringa M
Developmental Medicine and Child Neurology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/dmcn.14326" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14326</a>
Survival and Health Care Use After Feeding Tube Placement in Children With Neurologic Impairment
BACKGROUND AND OBJECTIVES: Children with neurologic impairment (NI) often undergo feeding tube placement for undernutrition or aspiration. We evaluated survival and acute health care use after tube placement in this population. METHODS: This is a population-based exposure-crossover study for which we use linked administrative data from Ontario, Canada. We identified children aged 13 months to 17 years with a diagnosis of NI undergoing primary gastrostomy or gastrojejunostomy tube placement between 1993 and 2015. We determined survival time from procedure until date of death or last clinical encounter and calculated mean weekly rates of unplanned hospital days overall and for reflux-related diagnoses, emergency department visits, and outpatient visits. Rate ratios were estimated from negative binomial generalized estimating equation models adjusting for time and age. RESULTS: Two-year survival after feeding tube placement was 87.4% (95% confidence interval [CI]: 85.2%–89.4%) and 5-year survival was 75.8% (95% CI: 72.8%–78.4%). The adjusted rate ratio comparing weekly rates of unplanned hospital days during the 2 years after versus before tube placement was 0.92 (95% CI: 0.57–1.48). Similarly, rates of reflux-related hospital days, emergency department visits, and outpatient visits were unchanged. Unplanned hospital days were stable within subgroups, although rates across subgroups varied. CONCLUSIONS: Mortality is high among children with NI after feeding tube placement. However, the stability of health care use before and after the procedure suggests that the high mortality may reflect underlying fragility rather than increased risk from nonoral feeding. Further research to inform risk stratification and prognostic accuracy is needed.
Nelson K E; Rosella L C; Mahant S; Cohen E; Guttmann A
Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2018-2863" target="_blank" rel="noreferrer noopener"> 10.1542/peds.2018-2863</a>