bluuebunny/crossref_metadata_2025_split huggingface dataset:
"Does One Size Fit All? - People’s expectations of future health and welfare services "
Authors: Fineide Mona Jerndahl , Håvold Ole Kristian Sandnes , Wenstøb Bengt Morten Maximilian 
Published: January 2024

Background: Recent schemes address the challenge that patients’ needs for quality and coordinated services are not sufficiently met in the welfare state. In recent years, a number of measures have been carried out to support integration among the organisations in the health and welfare service organisations and one of the main strategies developed is streamlining of health care through standardised tools and techniques. Neo-liberal ideology focusing on effectiveness and modernisation of the public sector seems to be adopted into the Nordic welfare model. At the same time as this streamlined approach, the need for “tailored” services is emphasised as important in addressing the issues of empowerment.
By analysing people’s expectation of future health and welfare services this paper discusses how the two contradictory core values unfolds within the framework of a Nordic welfare state.
Methods: This is a qualitative study. We conducted individual interviews with one woman and one man in each 10-year, thus representing ages from 20 to 80. We also interviewed two senior experts at research centres and two politicians. The participants were asked three questions:

If you could decide, how would the welfare services be organized 20 years from now? 2. How do you think it will actually be organized? 3. If I asked you the same questions 10 years ago, would you give me the same answers? If not, what has changed?

We used NVivo for thematic content analysis in coding categories and themes.
Results and Lessons learned: This is an ongoing study and the results will be presented and discussed at the conference. The preliminary analysis shows tailored welfare services as important in addressing issues of people’s individual needs, empowerment and daily well-being. On the other side; cost effective streamlined “one size fit all” services are perceived as potential future model of the welfare state. Cooperative models including people’s perspective emerges as an important issue to reach ideals of integration from the people’s perspective.
Limitations and suggestions for future research: From people’s perspective, quality of integrated services relies on tailoring. To a certain extent, the upcoming results will be of relevance for a better understanding of the complexity of organising welfare services.
Keywords: Welfare state, expectations, scenarios, integration, empowerment
Profiles and pathways of care in situations of vulnerability: what we learn from the journey of refugees and asylum seekers within the refugee clinics (RC) in Quebec
Authors: Maillet Lara , Tchango Ngalé Georges Alain , Goudet Anna , Godbout Isabelle , Déry Johanne , Charest Stéphanie , Malham Sabina Abou 
Published: January 2024

Although primary and secondary access to healthcare and services for migrants is considered an essential component of their integration into host societies, their pathways through the health system remain marked by obstacles. However, the migrant population is not a homogeneous group, and the barriers observed in access to care may be exacerbated within certain vulnerable subgroups. This is particularly the case for refugees and asylum seekers.
As part of this proposal, we benefit from the existence of valuable administrative data (iCLSC) that has informed the progress of refugees and asylum seekers within RC in Quebec since January 1, 2012, to describe and analyze their profiles and service pathways.
We mainly try to assess to what extent the trajectories observed in the consultations of refugees and asylum seekers (both in terms of healthcare professionals consulted and reasons for consultation) reflect or not the relevance, coherence and adaptation of services and pathways to meet their needs.
We mobilize a quantitative approach through three methods of analysis: (i) a descriptive analysis of the profiles of care making it possible to associate the socio-demographic characteristics of refugees and asylum seekers with two indicators of the course of care (healthcare professionals consulted and reasons for consultations); (ii) an analysis of the sequences making it possible to describe and identify the standard profiles of care pathways; (iii) a multinomial regression analysis to identify the factors associated with the different types of pathways.
Finally, our proposal wishes to answer the question structuring theme 5 of the Conference: How can we reach the most vulnerable groups to ensure an inclusive approach?
Governance in times of turbulence: how has management by pathway facilitated the adaptation of the health and social services system in the context of Covid-19?
Authors: Maillet Lara , Goudet Anna , Godbout Isabelle , Thiebaut Georges-Charles , Nassera Touati , Malham Sabina Abou , Duhoux Arnaud , Breton Mylaine 
Published: January 2024

In Quebec, the notion of pathway integrates social and health dimensions, user-centered and is conceived as an intertwining of several episodes of care and services over long periods with an intersectoral perspective. A reform in Quebec's health system ‎‎2015‎‎ put the implementation of such pathways at the agenda.
We conducted a developmental evaluation to study the implementation of integrated care pathways in 3 healthcare organizations and their network in Quebec (2017-2019). And we currently conduct another one to follow up with these 3 organizations (+ 2) in the turbulent context of COVID-19. In parallel, we gathered observational notes during meetings of various crisis cells set up to address the COVID-19 pandemic in its very early days in one of the territories of the study (April-May 2020).
We seek to understand how change in governance occurred during the development of the integrated care pathways and its impact of leadership and decision taking inside and outside through healthcare organizations. Ultimately, we try to understand whether these governance practices have effectively facilitated the response to the pandemic crisis.
The analysis used a conceptual framework based on the Complex Adaptive Systems ‎‎(CAS)‎‎ approach of multi-level governance and the model for robust governance strategies in a turbulent context developed by Ansell, Sorensen and Torfing (2020). Qualitative empirical data were collected through documentation (N=12) and observation (N=80h).
Our results show that implementation of health and social pathways is based on a double innovation in terms of governance: based on a strategic community approach and introducing a matrix structure in the organization. Although pathway-based management has not been fully implemented in the healthcare organizations studied, our observations show that the change of vision has taken place and certain reflexes have been adopted. For example, the pandemic crisis cells were based on the perspectives put forward by the field (operational level), and the decision, action and feedback loops were very short. The COVID-19 pandemic showed that the health system is capable of great agility, particularly when it relies on a matrix dynamic for decision- making. Management by care and services pathways provides a systemic vision of the issues faced by the organization, in addition to being a cross-functional management tool between the various departments and between the operational, tactical and strategic levels of governance.
Digital assistance to support integrated healthcare.
Authors: Araja Diana , Berkis Uldis , Murovska Modra 
Published: January 2024

This abstract is devoted to digital assistance as a supportive tool of integrated healthcare. According to the World Health Organization, developing more integrated people-centred care systems has the potential to generate significant benefits to health and healthcare of all people, including improved access to care, improved health and clinical outcomes, better health literacy and self-care, increased satisfaction with care, improved job satisfaction, improved efficiency of services, and reduced overall costs [1]. At the same time, the concept of Digital Health supports the implementation of a person-centred integrative approach in healthcare. The European Commission published a Communication on the digital transformation of health and care, which identified the priorities, including personalised medicine through shared European data infrastructure, allowing researchers and other professionals to pool resources, and citizen empowerment with digital tools for user feedback and person-centred care using digital tools to empower people to look after their health, stimulate prevention and enable feedback and interaction between users and healthcare providers [2].
A project to develop a digital assistance platform for long-COVID and associated myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) patient healthcare is planned in Latvia. The current main challenge is diagnosis, stratification and monitoring of long-COVID and associated ME/CFS at the point of care, as well as patients’ self-awareness and proper practical navigation within the health system. A technology-grounded solution for m-Health based screening and self-management of ME/CFS will be developed within the patient-centred App model. The objectives of this model are: 1) Patient-centred, societally-oriented, real-time decision-support using an innovative App; 2) Using artificial intelligence to support decision-making on patients and treatment options; 3) Learning opportunities for patients, caregivers and health professionals about the illness. Sustainability of project activities will be supported by integrating of the new databases with the national e-Health and Electronic Health Records (EHRs) systems and national research institutions’ IT systems with the future option to become a base for further developing a common long-COVID and ME/CFS Patients’ Registry.
The project intends to actively involve patients and clinicians in the development of a fully-fledged digital assistance platform that will support the development of digital health literacy and the implementation of integrated healthcare principles.

References:
1. World Health Organization. (‎2015)‎. WHO global strategy on people-centred and integrated health services: interim report. World Health Organization. https://apps.who.int/iris/handle/10665/155002
2. European Commission. Shaping Europe’s digital future – eHealth. https://digital-strategy.ec.europa.eu/en/policies/ehealth
The many roles of people with lived experience and how these can be better supported within integrated care policy and implementation: a world cafe discussion.
Authors: Miller Robin , Stein Viktoria , Wojtak Anne , Jackson Caroline , Van der Vlegel-Brouwer Wilma , Ehrenberg Nieves 
Published: January 2024

Introduction: This workshop will explore the many roles that people with lived experience of health and social care can play in shaping the vision, planning and implementation of integrated care and consider what supports would enable them to fulfil these roles.
Why are you conducting a workshop? Whilst it is widely accepted that integrated care policy and programmes should be based on the needs and interests of people with lived experience of health and social care and their communities, this is rarely achieved in practice. The workshop team have led two international projects regarding co-production within integrated care ( ‘citizen leader research’ by the Universities of Birmingham, Leiden and Toronto and the Changemakers project within Transform). A common issue identified is that people involved in such activities are asked to take on different roles – for example as a champion, ambassador, advocate, partner, advisor, connector, or leader – with the nature of these roles affecting the expectations of them and the identities that they adopt. We would like to run a workshop to give participants an opportunity to explore what is meant by these roles, how people can be supported to do so effectively, and how organisations and professions can provide a receptive context.
Who is it for? The workshop is for people with lived experience of health and social care (including family carers) and professionals, policy makers, managers and academics who are committed to co-production as the basis of integrated care.
What are you going to do?
8 minutes introduction & overview of the roles that people with lived experience play (as identified in the projects)
5 minutes response from WHO based on their meaningful engagement framework
2 minutes explanation of the engagement exercise
40 minutes (or ideally longer if we are able to have a 90 minute session) world café discussion
5 minutes summary feedback from each table
How are you going to engage with the audience? Participants will have opportunity to move around the world café table – each one will focus on a different role that people take on. A facilitator will remain at each table to encourage discussion on the nature, support, and context for such a role. The discussion will be visually recorded to enable participants to build on what has come before to enable a rich and diverse conversation.
How are you going to summarize the take home messages?There will be short feedback from each table on main points discussed – the facilitation team will then write up the discussions into a short and accessible summary which will be shared through social media, integrated care networks and relevant WHO routes.
RecoveryAcademies, we show how we do it in Fanlders and Brussels!
Authors: Derison Toon , Sitskroon Nina , Goethals Ilse 
Published: January 2024

A Recovery Academy (RA) provides an open course offer on various themes related to recovery and resilience.
The offer is open to any citizen with a desire to learn around their mental recovery, their loved ones (neighbor, family, caregiver) are welcome as well.
The offer is unique, and stands for co-creation at all its levels!
- People with lived experience and a caregiver, teach a course together.
- They run the academy in co-creation.
- Partners in a region do subscribe the key-principles of an Recovery Academy and work together based on the principle of susidiarity.
Based on our course "yourself and recovery," we show in
the workshop, how we work in a course around the themes of: Connectedness, Hope, Identity, Meaning, Making choices and dealing with life's difficulties.
The workshop will be given by a professional and a PEER worker, it will be a moment of learning together and sharing experiences.
We will briefly discuss the critical success factors of an RA and address the questions of the participants.
"Palliare" surrounded with care.
Authors: Wauters Martine , Kohl S , De Laet F , Gios J , Janssens A , Vandamme Timon 
Published: January 2024

Introduction: Despite scientific evidence about the benefits of Advance Care Planning (ACP) for patients with non-curative treatment, ACP is rarely discussed in practice. Why is it difficult for health professionals to mention ACP? How can patients and their family caregivers take control of their own care process and be actively engaged?
The aim of this project is to empower patients and their family caregivers to discuss their wishes and care goals in a palliative phase, and to provide health professionals with communication techniques and skills to use in a palliative conversation. A common language is introduced so that all parties can communicate more comfortably with each other.
Target groups: We focus on oncology patients with non-curative therapy, their relatives and their professional care providers.
To identify these palliative patients, physicians will have to indicate via MOC (multidisciplinary oncologic consultation) registration if the therapy of an oncology patient is curative or non-curative. If the patient can’t be cured, early palliative care needs to be integrated into daily oncology practice by offering an interactive meeting in group. The group of care providers is a multidisciplinary team with oncologists, oncology nurses, palliative care specialists, bedside nurses, social workers, psychologists, etc.
Methodology: We started with a kick-off session in which the members of the project (oncologists, oncology nurse, palliative care specialist and palliative care nurse) explained the purpose of the project to healthcare professionals. We explained a number of concepts and suggested the specific language we want to maintain.
After this first session, we organized interactive workshops for patients and their relatives to provide them with tools to establish and communicate about their end of life wishes and care goals. In this workshop, we explained the concept of ‘palliative care’ and the importance of an active involvement of the patient and his/ her relatives during this palliative phase. By performing a role play, we elaborated on the questions that are important to ask the physician, and how patients and relatives can ask these questions.
In parallel we organized workshops for different teams of health professionals to provide them with more advanced communication skills and to learn them how to sense when patients are ready for a palliative care conversation. In these interactive workshops we also interspersed communication theory with role plays.
Results: Surveys based on the validated PAM-13 questionnaire will be provided to all participants (patients and healthcare professionals). Because the project is still in full development at the moment, we don’t have results yet. We hope to present our results during the ICIC23 in May 2023 and to enthuse and inspire other healthcare professionals about the importance of patient empowerment during a palliative phase.
The lived experiences of complex care of families with complex problems: A realist evaluation of Integrated Social Care
Authors: Van Eck Marcel , De Jong Anneke , Cloin Mariëlle , Ettema Roelof , Van Regenmortel Tine 
Published: January 2024

Introduction/Background: An ongoing realist evaluation of the implementation of the program [Amsterdam Customization method] in social welfare in Amsterdam (NL), focussing on multi-problem families, revealed among others, that participating organisations within the program tend to focus on their own tasks, without shared decision making. This becomes extremely clear in the context of safety for the children: parents are not seen as partners to guarantee this safety but as causer of the problem. And this view from the perspective of one organisation seems to diminish all efforts to offer the parents help in finding ways to create a safe environment for their children. Instead parents are more or less threatened by the risk that the children will be taken away from them. The mechanism is a lack of interdisciplinary adjustment of observations and a lack of shared decision making, the outcome for the parents is fear and withdrawal from involved professionals. This is in contrast with the principles of the implemented program.
Why a workshop? A 90 minutes workshop is a good way to share experiences with the delegates and find ways to handle a well-known problem within the implementation of integrated care programs.
Who is it for? Participants from the area of social work as well as participants in implemented integrated care programs as such are a welcome audience to share ideas and experiences.
What we are going to do?
•A 15 minute
ointroduction on the context of the implemented program and the findings of one part of the research: client interviews [first researcher]
oFocus on one finding: the missing collaboration between all stakeholders in the context of safety for the children in multi-problem families [first researcher]
•Depending on the number of participants: 60 minutes discussion in one or more groups around two questions (1. do you recognise the situation [examples]; 2. What did you do / are you planning to do/ could be done to stimulate shared decision making that involves all stakeholders)
•15 minutes report and (an attempt to) conclusions
•10 minutes wrap up and eventually exchange of contact addresses

How are you going to engage with the audience? Fitting to the concept of a workshop the meeting will be interactive, participants in the subgroups are asked to appoint a speaker to present the core of the group discussion, results of the plenary will be written down and per email shared with interested participants.
How are you going to summarize the take home messages? We end up with lessons learned and sum these up in take home messages. Attendees are invited to write these down and take these with them.
A influência da vulnerabilidade social nas questões de saúde da população idosa na América Latina
Authors: Carvalho Claudia Reinoso Araujo de , Dos Santos Jefferson Gomes , Da Silva Beatriz Vieira , De Seixas Juliana Mell Mileski 
Published: January 2024

Introdução: O aumento em larga escala da população idosa residente na América Latina cria demandas específicas para os países, exigindo novas políticas públicas que assegurem proteção social para esses indivíduos que estão expostos a um contexto de desigualdade social. A discrepância de renda que permeia os países latino-americanos determina uma queda na qualidade de vida da pessoa idosa, que, muitas vezes, influencia em sua integridade física e mental. Objetivo: Discutir, com base na literatura, como as condições de vulnerabilidade social influenciam nas questões de saúde da população idosa na América Latina. Método: Trata-se de um estudo de revisão bibliográfica de caráter qualitativo, realizado no Portal de Periódicos da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) e na Biblioteca Virtual em Saúde (BVS). No portal CAPES, utilizaram-se os descritores "envelhecimento", “saúde” e “pobreza”, escritos em inglês. Na BVS foram utilizados os termos “envelhecimento”, "saúde'', "pobreza", escritos em português. Foram identificados 92 artigos no portal CAPES e 183 na BVS, sendo que 21 artigos atenderam aos critérios de inclusão. Os artigos foram categorizados quanto ao tema. Resultados e discussão: Foram encontrados seis temas essenciais que nortearam a discussão, foram eles a inserção da rede de cuidado; o nível de renda; a vulnerabilidade social do cuidador; os fatores cognitivos; abusos, preconceitos e estigmas; e outros assuntos como religiosidade e adesão à políticas sociais e como esses aspectos podem impactar nas condições de saúde da população idosa. Conclusão: O estudo apresenta a existência de distintos fatores que podem afetar em diferentes aspectos da vida das pessoas idosas, especialmente, em suas condições de saúde, com base nisso, o estudo destaca as principais obras encontradas sobre essa temática, criando reflexão e diálogo entre elas de forma concisa ressaltando a importância da garantia dos direitos fundamentais das pessoas idosas.