We interviewed university graduates of 2020 in Ireland to understand how the coronavirus pandemic had affected them. Demonstrating a keen awareness of their mental health, participants had adopted self-care practices such as mindfulness. They recounted positive experiences of life in their ‘lockdown homes’ with supportive families. Some were embarking on normative adult pathways sooner than anticipated while others opted for postgraduate study to bide time. Participants reported heightened worry/anxiety and had limited their media use in response. Their plans did not extend beyond the immediate future, reflecting a degree of resignation. The participants accepted the strict constraints associated with pandemic management in Ireland. They did not view themselves as members of a group that was likely to experience the long-term costs of the pandemic but rather were attempting to negotiate their own pathway through labour market uncertainty while also demonstrating high levels of solidarity towards vulnerable groups in society.
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.
School closures and remote learning resulted in major disruptions for final-year secondary school students who were due to take their examinations in June 2020. Using the Constructivist-Grounded Theory method, we conducted 14 indepth interviews to gain insight into the impact of the coronavirus restrictions on the lives, education and plans of graduating secondary school students in Ireland. While participant responses to the pandemic were diverse, they can be categorised as those who were shielded against negative implications of the pandemic; those who struggled with worry and uncertainty; and those who became discontent as they awakened to the shortcoming of policymaking. Instead of assuming uniform effects of the pandemic in young populations, we need to be attuned to the diverse pathways whereby some young adults can tap into their resources (including creativity and social networks) while others need extensive support to make up for lost opportunities and isolation that ensued from the pandemic.
There is wide variation in terminology used to refer to children living with complex needs, across clinical, research and policy settings. It is important to seek to reconcile this variation to support the effective development of programmes of care for this group of children and their families. The European Academy of Pediatrics (EAP) established a multidisciplinary Working Group on Complex Care and the initial work of this group examined how complex care is defined in the literature. A scoping review was conducted which yielded 87 papers with multiple terms found that refer to children living with complex needs. We found that elements of integrated care, an essential component of care delivery to these children, were repeatedly referred to, though it was never specifically incorporated into a term to describe complex care needs. This is essential for practice and policy, to continuously assert the need for integrated care where a complex care need exists. We propose the use of the term Complex and Integrated Care Needs as a suitable term to refer to children with varying levels of complexity who require continuity of care across a variety of health and social care settings.
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.
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