Search

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic and subsequent measures to reduce transmission risk has led to unprecedented digital transformation across health, education and social care services. This includes UK paediatric speech and language therapy (SLT), which sits at the crossroads of these services. Given the rapid onset of this pandemic‐induced digital transition, there is now a need to capture, reflect and learn from the SLT profession so that benefits can be sustained, and barriers addressed. Aims: To survey the impact of COVID‐19 remote working on UK paediatric SLTs' digital views and experiences using the Capability, Opportunity, Motivation and Behaviour (COM‐B) model. Methods & Procedures: An online survey was conducted from May to October 2020. Respondents were asked to rate their use of technology in service delivery before and during the pandemic, to select factors facilitating digital practice, and to provide open‐response aspirations for the future role of technology in paediatric SLT which were analysed thematically using the COM‐B behaviour change model. Outcomes & Results: A total of 424 UK paediatric SLTs responded to the survey. Findings indicate a marked increase in clinicians' perception of their frequency, convenience and confidence with digital practice during COVID‐19 compared with before the pandemic. Respondents identified that specialist training (27%), funding for workplace devices (22%) and supportive leadership (19%) were most likely to facilitate sustained digital practice. Clinicians hoped for a blended approach going forward with technology enhancing existing best practice. Further prominent themes included digital accessibility for all and maintaining the increased opportunity for multidisciplinary working that videoconferencing has afforded. More service‐specific aspirations were bespoke technological solutions as well as parents/carers being able to engage remotely with school‐based provisions. Conclusions & Implications: During COVID‐19, paediatric SLTs' recognition and acceptance of how technology can augment practice has accelerated, with particular value being placed on inclusivity, choice, training, resources, leadership and indication of effectiveness. These are important considerations to help guide the profession towards the long‐term digital enhancement of SLT services. WHAT THIS PAPER ADDS: What is already known on the subject: The COVID‐19 pandemic led to an unprecedented interest in the use of technology across SLT practice. Studies are emerging nationally and internationally to identify the digital priorities of the SLT workforce, the areas of digital SLT provision that are thriving or lacking, and the evidence to guide clinical practice and service development. What this study adds to existing knowledge: This is the first UK‐wide COVID‐19 survey solely focusing on the digital practice of paediatric SLTs. The findings provide critical insights into SLT perception of how practice has been impacted in the early stages of the COVID‐19 pandemic, including digital trends that are service, condition and demographic specific. Tools and channels required to support sustained beneficial change are also discussed. What are the potential or actual clinical implications of this work?: This paper demonstrates the potential for digital solutions to enhance SLT practice, as long as implementation is guided by clinicians' experiences and perspectives. The findings lay groundwork for service development work, such as the creation of training packages, updating of clinical guidelines and care pathways, and development of processes to ensure equitable allocation of evidence‐based resources. [ABSTRACT FROM AUTHOR]