Clinical Associate Professor, Pediatrics - Gastroenterology
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.
View details for DOI 10.1542/hpeds.2020-0078
View details for PubMedID 32737165
View details for Web of Science ID 000485482200123
Background-Parental live liver donation is an attractive alternative to deceased donation for pediatric patients with end-stage liver disease (ESLD), yet very little has been published about the long-term emotional consequences of live liver donations on donors and their families.Objectives-To better understand the impact that a parental live liver donation has on the everyday life of the donor.Method-Thirteen living parental donors from 2 West Coast transplant centers participated. Data included semistructured interviews, observations, and field notes about the donors and their physical, emotional, and familial lives since their donation. The perceived impact of donation on parental donors and their intrafamilial relationships are reviewed and the social and emotional context of parental liver donation, including impacts on the predonation decisions and life after donation are analyzed.Results-Thematic analysis was used to analyze this set of interviews, and after open coding, 3 major categories emerged: a self-awareness process, a clarification of familial relationships, and a change in perspectives on community. The overarching theme that was constructed from the interviews suggested that the impact the donation had on the donors' lives was one of transformation.
View details for DOI 10.7182/pit2014286
View details for PubMedID 24598568
Providing potential living-related liver donors with all the necessary information before donation can be challenging. What information donors need and are not getting during the evaluation phase has not been defined.To increase understanding of the everyday life of living-related liver donors and to suggest educational strategies that could be used by transplant centers during the evaluation process.An interpretive ethnographic study based on a symbolic interactionism approach. All participants were interviewed; some were reinterviewed in order to better understand their experience as a donor.Interviews took place in the clinic, the donor's home, the donor's workplace, and in coffee shops depending on each donor's preference.A total of 13 parents who had donated the left lower lobe of their liver to their son or daughter at least 1 year ago.Interviews were analyzed by using qualitative research methods of coding, summarizing, and discussing concepts.The donors viewed the donation as a life-changing event, and 11 of 13 donors described seeking further information in addition to the information given to them by the transplant center. Searching the Internet, reading research articles, and speaking to other donors were activities demonstrated by the participants.
View details for Web of Science ID 000264255200007
View details for PubMedID 19341063