Caregiver Perspectives on Communication During Hospitalization at an Academic Pediatric Institution: A Qualitative Study
OBJECTIVE: Communication among those involved in a child’s care during hospitalization can mitigate or exacerbate family stress and confusion. As part of a broader qualitative study, we present an in-depth understanding of communication issues experienced by families during their child’s hospitalization and during the transition to home.
METHODS: Focus groups and individual interviews stratified by socioeconomic status included caregivers of children recently discharged from a children’s hospital after acute illnesses. An open-ended, semistructured question guide designed by investigators included communication-related questions addressing information shared with families from the medical team about discharge, diagnoses, instructions, and care plans. By using an inductive thematic analysis, 4 investigators coded transcripts and resolved differences through consensus.
RESULTS: A total of 61 caregivers across 11 focus groups and 4 individual interviews participated. Participants were 87% female and 46% non-white. Analyses resulted in 3 communication-related themes. The first theme detailed experiences affecting caregiver perceptions of communication between the inpatient medical team and families. The second revealed communication challenges related to the teaching hospital environment, including confusing messages associated with large multidisciplinary teams, aspects of family-centered rounds, and confusion about medical team member roles. The third reflected caregivers’ perceptions of communication between providers in and out of the hospital, including types of communication caregivers observed or believed occurred between medical providers.
CONCLUSIONS: Participating caregivers identified various communication concerns and challenges during their child’s hospitalization and transition home. Caregiver perspectives can inform strategies to improve experiences, ease challenges inherent to a teaching hospital, and determine which types of communication are most effective.
© 2018 Society of Hospital Medicine
Population
Caregivers of children discharged with acute medical conditions were eligible for recruitment if they were English-speaking (we did not have access to interpreter services during focus groups/interviews), had a child admitted to 1 of 3 services (hospital medicine, neurology, or neurosurgery), and could attend a focus group within 30 days of the child’s discharge. The majority of participants had a child admitted to hospital medicine; however, caregivers with a generally healthy child admitted to either neurology or neurosurgery were eligible to participate in the study.
Study Design
As presented elsewhere,17,20 we used focus groups and individual in-depth interviews to generate consensus themes about patient and caregiver experiences during the transition from hospital to home. Because there is evidence suggesting that focus group participants are more willing to talk openly when among others of similar backgrounds, we stratified the sample by the family’s estimated socioeconomic status.21,22 Socioeconomic status was estimated by identifying the poverty rate in the census tract in which each participant lived. Census tracts, relatively homogeneous areas of ~4000 individuals, have been previously shown to effectively detect socioeconomic gradients.23-26 Here, we separated participants into 2 socioeconomically distinct groupings (those in census tracts where <15% or ≥15% of the population lived below the federal poverty level).26 This cut point ensured an equivalent number of eligible participants within each stratum and diversity within our sample.
Data Collection
Caregivers were recruited on the inpatient unit during their child’s hospitalization. Participants then returned to CCHMC facilities for the focus group within 30 days of discharge. Though efforts were made to enhance participation by scheduling sessions at multiple sites and during various days and times of the week, 4 sessions yielded just 1 participant; thus, the format for those became an individual interview. Childcare was provided, and participants received a gift card for their participation.
An open-ended, semistructured question guide,17 developed de novo by the research team, directed the discussion for focus groups and interviews. As data collection progressed, the question guide was adapted to incorporate new issues raised by participants. Questions broadly focused on aspects of the inpatient experience, discharge processes, and healthcare system and family factors thought to be most relevant to patient- and family-centered outcomes. Communication-related questions addressed information shared with families from the medical team about discharge, diagnoses, instructions, and care plans. An experienced moderator and qualitative research methodologist (SNS) used probes to further elucidate responses and expand discussion by participants. Sessions were held in private conference rooms, lasted ~90 minutes, were audiotaped, and were transcribed verbatim. Identifiers were stripped and transcripts were reviewed for accuracy. After conducting 11 focus groups (generally composed of 5-10 participants) and 4 individual interviews, the research team determined that theoretical saturation27 was achieved, and recruitment was suspended.
Data Analysis
An inductive, thematic approach was used for analysis.27 Transcripts were independently reviewed by a multidisciplinary team of 4 researchers, including 2 pediatricians (LGS and AFB), a clinical research coordinator (SAS), and a qualitative research methodologist (SNS). The study team identified emerging concepts and themes related to the transition from hospital to home; themes related to communication during hospitalization are presented here.
During the first phase of analysis, investigators independently read transcripts and later convened to identify and define initial concepts and themes. A preliminary codebook was then designed. Investigators continued to review and code transcripts independently, meeting regularly to discuss coding decisions collaboratively, resolving differences through consensus.28 As patterns in the data became apparent, the codebook was modified iteratively, adding, subtracting, and refining codes as needed and grouping related codes. Results were reviewed with key stakeholders, including parents, inpatient and outpatient pediatricians, and home health nurses, throughout the analytic process.27,28 Coded data were maintained in an electronic database accessible only to study personnel.
RESULTS
Participants
Resulting Themes
Analyses revealed the following 3 major communication-related themes with associated subthemes: (1) experiences that affect caregiver perceptions of communication between the inpatient medical team and families, (2) communication challenges for caregivers related to a teaching hospital environment, and (3) caregiver perceptions of communication between medical providers. Each theme (and subtheme) is explored below with accompanying verbatim quotes in the narrative and the tables.
