Providing person-centered care for patients with complex healthcare needs: A qualitative study

Abstract

Background People with chronic conditions have complex healthcare needs that lead to challenges for adequate healthcare provision. Current healthcare services do not always respond adequately to their needs. A modular perspective, in particular providing visualization of the modular service architecture, is promising for improving the responsiveness of healthcare services to the complex healthcare needs of people with chronic conditions. The modular service architecture provides a comprehensive representation of the components and modules of healthcare provision. In this study, we explore this further in a qualitative multiple case study on healthcare provision for children with Down syndrome in the Netherlands. Methods Data collection for four cases involved 53 semi-structured interviews with healthcare professionals and 21 semi-structured interviews with patients (the parents of children with Down syndrome as proxy). In addition, we gathered data by means of practice observations and analysis of relevant documents. The interviews were audio-recorded, transcribed verbatim and analyzed utilizing the Miles and Huberman approach. Results Our study shows that the perspectives on healthcare provision of professionals and patients differ substantially. The visualization of the modular service architecture that was based on the healthcare professionals’ perspective provided a complete representation of (para)medical outcomes relevant to the professionals’ own discipline. In contrast, the modular service architecture based on the patients’ perspective, which we define as a person-centered modular service architecture, provided a representation of the healthcare service that was primarily based on functional outcomes and the overall wellbeing of the patients. Conclusion Our study shows that visualization of the modular service architecture can be a useful tool to better address the complex needs and requirements of people with a chronic condition. We suggest that a person-centered modular service architecture that focuses on functional outcomes and overall wellbeing, enables increased responsiveness of healthcare services to people with complex healthcare needs and provision of truly person-centered care.

Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome

“…Therefore, our sample of six healthcare professionals might not be representative of the experiences and concerns of parents and healthcare professionals caring for individuals with Down syndrome in other parts of the world. Nevertheless, previous research has shown that the organisation of care for individuals with Down syndrome is fairly similar throughout the Netherlands (Peters et al, 2020). In addition, parents were considered as proxies for children with Down syndrome in our study.…”

“…This professional would have an up-to-date overview of the complexity of different health problems of the child with Down syndrome, an overview of the different healthcare providers involved, and help to find the healthcare needed. Literature shows that the presence of a coordinator who coordinates the entire process increases the chance of the transition's success (Bindels-de Heus et al, 2013;Dimitropoulos et al, 2019;Goralski et al, 2017;van den Driessen Mareeuw et al, 2020;Viner, 1999;White & Cooley, 2018) fairly similar throughout the Netherlands (Peters et al, 2020). In addition, parents were considered as proxies for children with Down syndrome in our study.…”

“…Healthcare for these individuals is sometimes organised in multidisciplinary outpatient clinics (Santoro et al, 2021; Skotko et al, 2013; Tenenbaum et al, 2008). In the Netherlands, care for children with Down syndrome is coordinated by paediatricians running multidisciplinary outpatient clinics, so called ‘Downteams’ (Peters et al, 2020). Around the age of 18 years, children make the transfer (transition) to adult care providers.…”

“…It is essential for the success of the transition of care that GPs and the intellectual disability physicians communicate regularly. Without frequent communication, overlap or gaps in healthcare provision can F I G U R E 1 Framework for transition from to adult care arise(Peters et al, 2020) which does certainly not enhance continuity of care. Finally, it is important that the parties involved evaluate the transition to improve future transitions and ensure that all the necessary information about patients is transferred.…”

Developing a New Technique for Determining Service Modularity Level

“…Despite the growing body of research on service modularity, practical applications of modular delivery are relatively rare (de Mattos et al, 2019) in other service contexts except reported cases in healthcare (Peters et al, 2020), logistics (Cabigiosu et al, 2015), IT (Tuunanen et al, 2022), education (Sorkun et al, 2022), legal services (Giannakis et al, 2018), and tourism (Avlonitis & Hsuan, 2017). The literature offers little in the way of decision support for planning modular service delivery and weighing the changes to be implemented.…”