Parent Perceptions and Experiences Regarding Medication Education at Time of Hospital Discharge for Children With Medical Complexity

Abstract

BACKGROUND: Children with medical complexity (CMC) often require complex medication regimens. Medication education on hospital discharge should provide a critical safety check before medication management transitions from hospital to family. Current discharge processes may not meet the needs of CMC and their families. The objective of this study is to describe parent perspectives and priorities regarding discharge medication education for CMC. METHODS:We performed a qualitative, focus-group-based study, using ethnography. Parents of hospitalized CMC were recruited to participate in 1 of 4 focus groups; 2 were in Spanish. Focus groups were recorded, transcribed, and then coded and organized into themes by using thematic analysis.RESULTS: Twenty-four parents participated in focus groups, including 12 native English speakers and 12 native Spanish speakers. Parents reported a range of 0 to 18 medications taken by their children (median 4). Multiple themes emerged regarding parental ideals for discharge medication education: (1) information quality, including desire for complete, consistent information, in preferred language; (2) information delivery, including education timing, and delivery by experts; (3) personalization of information, including accounting for literacy of parents and level of information desired; and (4) self-efficacy, or education resulting in parents' confidence to conduct medical plans at home. CONCLUSIONS:Parents of CMC have a range of needs and preferences regarding discharge medication education. They share a desire for high-quality education provided by experts, enabling them to leave the hospital confident in their ability to care for their children once home. These perspectives could inform initiatives to improve discharge medication education for all patients, including CMC.

Parental Factors Affecting Pediatric Medication Management in Underserved Communities

“…Interestingly, parents recognized their deficit in medication knowledge/skill and expressed desire for more education and hands-on training, which has also been noted in literature for children with medical complexity. 28 In our study, parents wanted simplified terminology and digestible information. Common instructions, such as "three times a day," were not as clear to parents as providers believed.…”

Health Literacy–Informed Communication to Reduce Discharge Medication Errors in Hospitalized Children

“…The anxiety, stress, and poor sleep often experienced by caregivers during their child's hospitalization may temporarily worsen health literacy and further interfere with caregivers' ability to effectively manage discharge instructions. [13][14][15][16] Health literacy-informed communication strategies-plain language, pictures or pictograms, teach back, and demonstration with show back-improve communication and comprehension and reduce medication errors and patient harm. 5,[17][18][19][20][21][22] However, clinicians infrequently use these strategies, citing barriers, such as time constraints and competing patient priorities.…”

A Quality Improvement Initiative to Improve Pediatric Discharge Medication Safety and Efficiency

“…2 A focus group of parents of children with medical complexity highlighted the need for high-quality education provided by experts that enables them to "leave the hospital confident in their ability to care for their children once home." 6 Parents wanted complete, consistent information personalized to their literacy level, language, and desire for detail. In addition, the timing and delivery of the information mattered, as well as the ability to feel self-efficacious after receiving medication information.…”