Families and providers caring for medically complex patients share goals

1. In this qualitative, interview-based study, families’ priorities, preferences, and goals for transition of care were discussed. Interview themes were relatively consistent between parents and healthcare providers.

2. Consistent themes were seen among effective engagement with providers, respect for family discharge readiness, care coordination, timely discharge processes, pain and symptom control, self-efficacy to support recovery and ongoing child development, and normalization of routine.

Study Rundown: While children and adolescents with medical complexity (CMC) make up a small percentage of the general population, they account for a larger relative proportion of hospitalizations and healthcare resource utilization. This study identified the need to better facilitate hospital-to-home transitions of this population, as this time period is an established risk period for these patients. Little is known about the priorities and needs of the families caring for CMC, therefore the objectives of this study were to examine the scope of preferences, priorities, and goals of these parents to better understand their needs. Using semistructured interviews with families of hospitalized CMC and both inpatient and outpatient providers, themes surrounding 7 domains emerged. These domains included effective engagement with providers, respect for family discharge readiness, care coordination, timely discharge processes, pain and symptom control, self-efficacy to support recovery and ongoing child development, and normalization of routine. Perspectives of parents and providers were mostly consistent with each other, with all 7 domains emerging in analysis of both parties’ responses. Though completion at a single center limits generalizability, this study provides a foundation to understand the needs and goals of families heading toward hospital discharge.

Click to read the study published today in Pediatrics

Relevant Reading: The care transitions intervention: results of a randomized controlled trial

Study Author, Dr. JoAnna Leyenaar, MD, MPH, MSc, talks to 2 Minute Medicine: Division of Pediatric Hospital Medicine, Department of Pediatrics, Dartmouth-Hitchcock Medical Center, and The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire

“In this study, parents of children with medical complexity emphasized how important many aspects of the hospital-to-home transition are to them, and they particularly emphasized how important it was to take into account their normal routines, both during the hospital stay and when planning for discharge.  The results of this study suggest that we have important work to do, both to support families’ routines as they come into the hospital, and to take them into consideration when they go home. ”

In-Depth [qualitative study]: In this study, semistructured interviews of 23 families of inpatient CMC from one tertiary care center were conducted from 2013-2014. In addition, 16 providers were surveyed, half of whom were primarily outpatient providers. Open coding was used to review transcripts of interviews, and themes across 7 domains emerged among both families and providers. Family priorities, goals, and preferences were largely aligned with those of providers. Within the domain of family engagement, themes included parental desire to advocate for their child, their role in medical decision-making and communication with the healthcare team. Providers agreed that family engagement was central to transition of care. Within the domain of respect of families’ discharge readiness, themes included varied readiness to discuss discharge, respect for families’ perspective and fear of readmission. Providers agreed that family perspective was critical in discharge preparation, but their opinions were inconsistently elicited. Within the care coordination prior to discharge domain, themes included transportation arrangement, medication and supply coordination, and post-discharge follow-up. Families felt that the most stressful experience was missing or having limited access to supplies and services after a hospital stay. Within the timely and efficient discharge domain, responses highlighted discharge time of day, and the process itself. Both families and providers agreed on the importance of a timely discharge earlier in the day, though both acknowledged that often this does not occur for various reasons. Within the domain of pain and symptom control, one major theme included symptom control en route home, as well as at home. Parents reinforced the importance of normalizing routine, and their ability to manage medical equipment and medications.

Image: PD

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