April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: Development and Qualitative Evaluation of a NICU Genetic Testing Theory-Informed Patient Decision Aid
Background and Problem
Genetic testing is an essential diagnostic tool in the neonatal intensive care unit (NICU). However, current NICU communication is challenging. One potential strategy to improve communication about NICU genetic testing is a patient decision aid (PtDA). PtDAs help patients make difficult health decisions. Previous research indicates that theory-informed decision aids are the most effective. Self-determination theory (SDT) is a motivation theory; however, a handful of researchers have begun using it as a communication framework, applying SDT constructs (competence, autonomy, relatedness) to communication best practices. To our knowledge, few PtDAs use SDT as a guiding framework. This led us to the research question: What can NICU guardians reveal about the potential effectiveness of a neonatal genetic testing PtDA?
Methods
We created a PtDA using previous guidance established by Head et al. (2022) to operationalize each construct. We used white space and a 6th-grade reading level to create a sense of competence, language and analogies to create a sense of autonomy (ex.: “Genetic tests show us genes”), and phrasing to convey relatedness (ex.: “We know this decision is difficult, but we’ll care for your baby no matter what you decide”). To test, revise, and ensure the PtDA met the audience’s information needs, we conducted a series of interviews with current and former NICU parents/guardians of infants younger than three. Four to eight parents per round reviewed a version of the aid, providing feedback on comprehension, likes/dislikes, and SDT constructs’ effects on decision-making and thought processes. Following each round, we transcribed and revised the PtDA based on the cumulative feedback and findings. A new set of four to eight guardians then reviewed the aid, and we repeated the process three total times. After completing all rounds of interviews and revisions, we conducted thematic analysis on interview transcriptions to identify salient themes related to NICU genetic testing decision-making.
Findings
Findings reveal that the PtDA addresses the four functions of NICU communication identified by other researchers (Wreesmann et al., 2021). SDT PtDA was effective in facilitating guardians’ NICU genetic testing decision-making. Guardians referenced feeling related, competent, and autonomous throughout their interviews and when discussing their likeliness to consent to genetic testing. Additionally, guardians said they would use the tool to communicate with their families and friends about their infants’ situation, as well get additional feedback on genetic testing. Ultimately, guardians expressed how the aid would relieve much of their decisional anxiety and facilitate more thoughtful, intentional decision-making in the NICU.
Discussion and Implications
SDT proved valuable and effective when used in a PtDA. The final version of the PtDA will be integrated into a local NICU. Additional data is needed next to prove the tool’s efficacy further before results can be generalized and SDT can be used in PtDA for other settings and decisions.
Genetic testing is an essential diagnostic tool in the neonatal intensive care unit (NICU). However, current NICU communication is challenging. One potential strategy to improve communication about NICU genetic testing is a patient decision aid (PtDA). PtDAs help patients make difficult health decisions. Previous research indicates that theory-informed decision aids are the most effective. Self-determination theory (SDT) is a motivation theory; however, a handful of researchers have begun using it as a communication framework, applying SDT constructs (competence, autonomy, relatedness) to communication best practices. To our knowledge, few PtDAs use SDT as a guiding framework. This led us to the research question: What can NICU guardians reveal about the potential effectiveness of a neonatal genetic testing PtDA?
Methods
We created a PtDA using previous guidance established by Head et al. (2022) to operationalize each construct. We used white space and a 6th-grade reading level to create a sense of competence, language and analogies to create a sense of autonomy (ex.: “Genetic tests show us genes”), and phrasing to convey relatedness (ex.: “We know this decision is difficult, but we’ll care for your baby no matter what you decide”). To test, revise, and ensure the PtDA met the audience’s information needs, we conducted a series of interviews with current and former NICU parents/guardians of infants younger than three. Four to eight parents per round reviewed a version of the aid, providing feedback on comprehension, likes/dislikes, and SDT constructs’ effects on decision-making and thought processes. Following each round, we transcribed and revised the PtDA based on the cumulative feedback and findings. A new set of four to eight guardians then reviewed the aid, and we repeated the process three total times. After completing all rounds of interviews and revisions, we conducted thematic analysis on interview transcriptions to identify salient themes related to NICU genetic testing decision-making.
Findings
Findings reveal that the PtDA addresses the four functions of NICU communication identified by other researchers (Wreesmann et al., 2021). SDT PtDA was effective in facilitating guardians’ NICU genetic testing decision-making. Guardians referenced feeling related, competent, and autonomous throughout their interviews and when discussing their likeliness to consent to genetic testing. Additionally, guardians said they would use the tool to communicate with their families and friends about their infants’ situation, as well get additional feedback on genetic testing. Ultimately, guardians expressed how the aid would relieve much of their decisional anxiety and facilitate more thoughtful, intentional decision-making in the NICU.
Discussion and Implications
SDT proved valuable and effective when used in a PtDA. The final version of the PtDA will be integrated into a local NICU. Additional data is needed next to prove the tool’s efficacy further before results can be generalized and SDT can be used in PtDA for other settings and decisions.