A co-design of clinical virtual care pathways to engage and support families requiring neonatal intensive care in response to the COVID-19 pandemic (COVES study).

BACKGROUND: In response to the COVID-19 pandemic, family presence restrictions in neonatal intensive care units (NICU) were enacted to limit disease transmission. This has resulted in communication challenges, negatively impacting family integrated care. AIM: To develop clinical care pathways to ensure optimal neonatal care to support families in response to parental presence restrictions imposed during the COVID-19 pandemic. METHODS: An agile, co-design process utilizing expert consensus of a large interdisciplinary team and focus groups and semi-structured interviews with families and HCPs were used to co-design clinical virtual care pathways. RESULTS: Three clinical virtual care pathways were co-designed: (1) building and maintaining relationships between family and healthcare providers; (2) awareness of resources; and (3) standardized COVID-19 messaging. Modifications were made to optimize uptake and utilization in the clinical areas. CONCLUSION: Clinical care virtual pathways were successfully co-designed to meet these needs to ensure more equitable family centered care.

The Impact of Restrictive Family Presence Policies in Response to COVID-19 on Family Integrated Care in the NICU: A Qualitative Study.

OBJECTIVES: To conduct a needs assessment with families and their healthcare team to understand the impact of restrictive family presence policies in the neonatal intensive care unit (NICU) in response to COVID-19. BACKGROUND: In response to the COVID-19 pandemic, significant restrictive family presence policies were instituted in most NICUs globally intended to protect infants, families, and HCPs. However, knowledge on the impact of the stress of the pandemic and policies restricting family presence in the NICU on vulnerable neonates and their families remains limited. METHODS: Individuals were eligible to participate if they were a caregiver of an infant requiring NICU care or a healthcare provider (HCP) in the NICU after March 1, 2020. Semi-structured interviews were conducted using a virtual communication platform, and transcripts were analyzed using inductive thematic qualitative content analysis. RESULTS: Twenty-three participants were interviewed (12 families and 11 HCPs). Three themes emerged: (1) successes (family-integrated care, use of technology), (2) challenges (lack of standardized messaging and family engagement, impact on parental wellbeing, institutional barriers, and virtual care), and (3) moving forward (responsive and supportive leadership). CONCLUSIONS: Our findings highlight the significant impact of family restrictions on the mental well-being of families, physical closeness with parents, and empathetic stress to HCPs. Further study of potential long-term impact is warranted.

Narrative Symposium: Patient and Research Participant experiences with Genetic Testing.

Twelve personal narratives address the challenges, benefits, and pitfalls of genetic testing. Three commentary articles explore these stories and suggest lessons that can be learned from them. The commentators come from backgrounds that include bioethics, public health, psychology, and philosophy.

Ethical issues in rehabilitation: a qualitative analysis of dilemmas identified by occupational therapists.

Little available research exists to address the range of ethical issues encountered by occupational therapists (OTs) in their daily clinical work. The few articles in the literature have tended to be case-based or anecdotal or have focused on professional issues rather than clinical issues. To characterize the array of clinical ethical issues in occupational therapy, we asked OTs in a free-standing academic rehabilitation hospital to describe in some detail up to three scenarios or situations from their clinical practice that raised morally troubling questions. A coding system was developed to preserve the richness of the detail but to allow for some categorization of the topics. A second section of the survey asked the therapists to rate whether various traditional ethics topics were of high, medium, or low interest to them. A third section asked that they identify the formats that would be most appealing to them for future educational interventions. Of the 56 therapists surveyed, 38 (or 68%) responded. The three self-generated topics mentioned most frequently by the therapists were (in decreasing order of frequency): reimbursement pressures, conflicts around goal setting, and patient/family refusal of team recommendations. The respondents were particularly interested in knowing more about patient-centered ethics topics, such as conflict resolution between teams and patients and the patient's role in decision making. Furthermore, they indicated a strong preference for interdisciplinary and interactive educational formats.