The role of bioethics services in paediatric intensive care units: a qualitative descriptive study.

BACKGROUND: There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. METHODS: A qualitative descriptive design was used to describe clinician's perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. RESULTS: From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. CONCLUSIONS: Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU.

Integrated care for children living with complex care needs: an evolutionary concept analysis.

Children with complex care needs (CCNs) are in need of improved access to healthcare services, communication, and support from healthcare professionals to ensure high-quality care is delivered to meet their needs. Integrated care is viewed as a key component of care delivery for children with CCNs, as it promotes the integration of healthcare systems to provide family and child-centred care across the entire health spectrum. There are many definitions and frameworks that support integrated care, but there is a lack of conceptual clarity around the term. Furthermore, it is often unclear how integrated care can be delivered to children with CCNs, therefore reinforcing the need for further clarification on how to define integrated care. An evolutionary concept analysis was conducted to clarify how integrated care for children with CCNs is defined within current literature. We found that integrated care for children with CCNs refers to highly specialised individualised care within or across services, that is co-produced by interdisciplinary teams, families, and children, supported by digital health technologies.  Conclusion: Given the variation in terms of study design, outcomes, and patient populations this paper highlights the need for further research into methods to measure integrated care. What is Known: • Children with complex care needs require long-term care, and are in need of improved services, communication, and information from healthcare professionals to provide them with the ongoing support they need to manage their condition. • Integrated care is a key component in healthcare delivery for children with complex care needs as it has the potential to improve access to family-centred care across the entire health spectrum. What is New: • Integrated care for children with CCNs refers to highly specialised individualised care within or across services, that is co-produced by interdisciplinary teams, families, and children, supported by digital health technologies. • There is a need for the development of measurement tools to effectively assess integrated care within practice.

Development of a factorial survey for use in an international study examining clinicians' likelihood to support the decision to initiate invasive long-term ventilation for a child (the TechChild study).

BACKGROUND: The decision to initiate invasive long-term ventilation for a child with complex medical needs can be extremely challenging. TechChild is a research programme that aims to explore the liminal space between initial consideration of such technology dependence and the final decision. This paper presents a best practice example of the development of a unique use of the factorial survey method to identify the main influencing factors in this critical juncture in a child's care. METHODS: We developed a within-subjects design factorial survey. In phase 1 (design) we defined the survey goal (dependent variable, mode and sample). We defined and constructed the factors and factor levels (independent variables) using previous qualitative research and existing scientific literature. We further refined these factors based on expert feedback from expert clinicians and a statistician. In phase two (pretesting), we subjected the survey tool to several iterations (cognitive interviewing, face validity testing, statistical review, usability testing). In phase three (piloting) testing focused on feasibility testing with members of the target population (n = 18). Ethical approval was obtained from the then host institution's Health Sciences Ethics Committee. RESULTS: Initial refinement of factors was guided by literature and interviews with clinicians and grouped into four broad categories: Clinical, Child and Family, Organisational, and Professional characteristics. Extensive iterative consultations with clinical and statistical experts, including analysis of cognitive interviews, identified best practice in terms of appropriate: inclusion and order of clinical content; cognitive load and number of factors; as well as language used to suit an international audience. The pilot study confirmed feasibility of the survey. The final survey comprised a 43-item online tool including two age-based sets of clinical vignettes, eight of which were randomly presented to each participant from a total vignette population of 480. CONCLUSIONS: This paper clearly explains the processes involved in the development of a factorial survey for the online environment that is internationally appropriate, relevant, and useful to research an increasingly important subject in modern healthcare. This paper provides a framework for researchers to apply a factorial survey approach in wider health research, making this underutilised approach more accessible to a wider audience.

Seeking online telemedicine abortion outside the jurisdiction from Ireland following implementation of telemedicine provision locally.

BACKGROUND: Abortion was legalised in Ireland in 2019 and telemedicine provision introduced in April 2020. We examined patterns in and reasons for seeking and receiving online telemedicine abortion outside the jurisdiction following legalisation and introduction of telemedicine abortion. METHODS: Quantitative analysis compared frequency of contact, completed requests, service user characteristics and reasons for contacting Women on Web (WoW). Statistical analyses assessed if COVID-19 restrictions and the implementation of telemedicine abortion locally impacted on WoW contact patterns. Thematic analysis of email correspondence analysed reasons for seeking online telemedicine abortion. RESULTS: There were 764 requests from Ireland to WoW in 2019-2020, with 225 (29.5%) completed. Requests declined by 90 (21%) between 2019 and 2020, and proportion of completed requests declined by 11.3% (n=70). During COVID-19 restrictions, the proportion of completed requests decreased even more (25%, n=24). Legal restrictions and cost declined as reasons for seeking online telemedicine and childcare, work/study commitments and being with partner/friend increased. During COVID-19 an abusive partner increased as the cited reason. Barriers cited in email correspondence included lack of proximate provider, not qualifying due to legal status and difficulty participating in consultations due to an abusive partner. CONCLUSIONS: Online telemedicine abortion seeking from WoW outside the jurisdiction reduced in the second year of legalisation. Local introduction of telemedicine abortion addressed reasons cited for seeking online telemedicine, other than abusive partner. Increasing awareness of abortion provision, particularly access pathways, free cost and confidentiality, promoting normalisation and retaining local telemedicine can reduce reliance on online telemedicine. Extending the format of local telemedicine abortion to include text-based contact could alleviate how an abusive partner impedes access.