Parent experience of HIE and hypothermia: A call for trauma informed care

Purpose/Background: Therapeutic hypothermia (TH) is the standard treatment for hypoxic ischemic encephalopathy (HIE). We surveyed parents of infants treated with TH about their experiences of communication and parental involvement in the Neonatal Intensive Care Unit (NICU). Methods/Approach: A 29-question anonymous survey was posted on a parent support website (https://www.hopeforhie.org) and sent to members via e-mail. Responses from open-ended questions were analyzed using thematic analysis. Results: 165 respondents completed the survey and 108 (66%) infants were treated with TH. 79 (48%) respondents were dissatisfied/neutral regarding the quality of communication in the NICU, whereas 127 (77%) were satisfied/greatly satisfied with the quality of parental involvement in the NICU. 6 themes were identified: 1) Setting for communication: Parents preferred face to face meetings with clinicians. 2) Content and clarity of language: Parents valued clear language (use of layman’s terms) and being explicitly told the medical diagnosis of HIE. 3) Immediate and Longitudinal Emotional Support: Parents required support from clinicians to process the trauma of the birth experience and hypothermia treatment. 4) Clinician time and scheduling: Parents valued the ability to join rounds and other major conversations about infant care. 5) Valuing the Parent Role: Parents desired being actively involved in rounds, care times and decision making. 6) Physical Presence and Touch: Parents valued being physically present and touching their baby; this presence was limited by COVID-related restrictions. Conclusion: We highlight stakeholder views on parent involvement and parent-clinician communication in the NICU and note significant overlap with principles of Trauma Informed Care: safety (physical and psychological), trustworthiness and transparency, peer support, collaboration and mutuality, and empowerment, voice and choice. We propose that a greater understanding and implementation of these principles may allow the medical team to more effectively communicate with and involve parents in the care of infants with HIE in the NICU.

Delivering collaborative mental health care within supportive housing: implementation evaluation of a community-hospital partnership

Background Approaches to address unmet mental health care needs in supportive housing settings are needed. Collaborative approaches to delivering psychiatric care have robust evidence in multiple settings, however such approaches have not been adequately studied in housing settings. This study evaluates the implementation of a shifted outpatient collaborative care initiative in which a psychiatrist was added to existing housing, community mental health, and primary care supports in a women-centered supportive housing complex in Toronto, Canada. Methods The initiative was designed and implemented by stakeholders from an academic hospital and from community housing and mental health agencies. Program activities comprised multidisciplinary support for tenants (e.g. multidisciplinary care teams, case conferences), tenant engagement (psychoeducation sessions), and staff capacity-building (e.g. formal trainings, informal ad hoc questions). This mixed methods implementation evaluation sought to understand (1) program activity delivery including satisfaction with these activities, (2) consistency with team-based tenant-centered care and with pre-specified shared lenses (trauma-informed, culturally safe, harm reduction), and (3) facilitators and barriers to implementation over a one-year period. Quantitative data included reporting of program activity delivery (weekly and monthly), staff surveys, and tenant surveys (post-group surveys following tenant psychoeducation groups and an all-tenant survey). Qualitative data included focus groups with staff and stakeholders, program documents, and free-text survey responses. Results All three program activity domains (multidisciplinary supports, tenant engagement, staff capacity-building) were successfully implemented. Main program activities were multidisciplinary case conferences, direct psychiatric consultation, tenant psychoeducation sessions, formal staff training, and informal staff support. Psychoeducation for tenants and informal/formal staff support were particularly valued. Most activities were team-based. Of the shared lenses, trauma-informed care was the most consistently implemented. Facilitators to implementation were shared lenses, psychiatrist characteristics, shared time/space, balance between structure and flexibility, building trust, logistical support, and the embedded evaluation. Barriers were that the initial model was driven by leadership, confusion in initial processes, different workflows across organizations, and staff turnover; where possible, iterative changes were implemented to address barriers. Conclusions This evaluation highlights the process of successfully implementing a shifted outpatient collaborative mental health care initiative in supportive housing. Further work is warranted to evaluate whether collaborative care adaptations in supportive housing settings lead to improvements in tenant- and program-level outcomes.