Tineke A. Abma

Leiden University Medical Centre | LUMC · Department of Public Health and Primary care

Protective measures that were taken during the COVID-19 pandemic, targeted older people as an at-risk group. The objective of this article is to investigate how older people in the Netherlands experienced the mitigation measures and whether these measures endorse and promote the idea of an age-friendly world. The WHO conceptual framework of age-fri...

This article addresses cases of remarkable recoveries related to healing after prayer. We sought to investigate how people who experienced remarkable recoveries re-construct and give meaning to these experiences, and examine the role that epistemic frameworks available to them, play in this process. Basing ourselves on horizontal epistemology and u...

While some areas of care work show increased recruitment of men, the care‐gap remains, especially in low paid occupations. Questions arise how masculinities play a part in this, and if caring masculinities obscure gender inequities while at the same time perpetuating them. This qualitative study focusses the negotiation of hegemonic and caring masc...

The COVID-19 pandemic emphasises the importance of care for our societies, yet underscores the inferiority of relational caring practices. During this time, we studied the participatory work of artists working with older adults using participant observations, in-depth interviews and visual ethnography. In this article, we present a case study of on...

In a transition from paternalistic to democratic care, Dutch nursing homes are expected to concentrate on the well-being of their residents and to align care with residents’ significant others. Although this way of working is affirmed in nursing home policies, care staff experiences difficulties with providing democratic care in practice. In co-cre...

Background Workplace health promotion (WHP) interventions have limited effects on the health of employees with low socioeconomic position (SEP). This paper argues that this limited effectiveness can be partly explained by the methodology applied to evaluate the intervention, often a randomised controlled trial (RCT). Frequently, the desired outcome...

Introduction: Nowadays the Western mental health system is in transformation to recovery-oriented and trauma informed care in which experiential knowledge becomes incorporated. An important development in this context is that traditional mental health professionals came to the fore with their lived experiences. From 2017 to 2021, a research project...

Purpose The purpose of this study was to explore the lived experience of dancing with Parkinson’s and Multiple Sclerosis in an inclusive dance group called ReDiscoverMe (RDM). Methods Participatory research approaches and interpretative phenomenological analysis were used to make sense of the lived experience captured in interviews and observation...

Background The prognosis for underweight individuals with an eating disorder (ED) and posttraumatic stress disorder (PTSD) is worse than for their peers without these comorbid symptoms. This qualitative study explores the experiences of trauma-focused Imagery Rescripting (ImRs) therapy of underweight inpatients being treated for an ED. Objective T...

Als dans een fundamenteel menselijke uitdrukkingsvorm is, wat vertelt dit ons dan over de waarde ervan voor mensen? Wat trekt ons en wat vinden wij in dans?

The setting: 83 reports of healing related to prayer (HP) were evaluated between 2015 and 2020 in the Netherlands. Research questions: What are the medical and experiential findings? Do we find medically remarkable and/or medically unexplained healings? Which explanatory frameworks can help us to understand the findings? Methods: 83 reported healin...

Aim To understand self‐employed long‐term‐care workers' experiences of precariousness, and to unravel how their experiences are shaped at the intersection of gender, class, race, migration and age. Background In the Netherlands, increasing numbers of nurses and nursing aides in long‐term care (LTC) opt for self‐employment. Societal organizations a...

Aim The provision of informal care occurs within larger care networks that involves collaboration with different professionals. This study aims to explore professionals’ perspectives on and experiences in collaboration with caregivers with a migration background in care networks around care recipients with acquired brain injury. Methodology An int...

Samen zingen, zeker samen met zangprofessionals, kan voor mensen met dementie betekenisvol zijn. Echter, de afgelopen twee jaar stond zingen in groepen op een laag pitje door COVID-19. Toch deed Participatiekoor pogingen om het samen zingen te faciliteren. Daardoor ontstond een combinatie van online en fysiek repeteren met een concert. Wat kunnen w...

Purpose This study aims to explore the perspectives of psychiatrists with lived experiences and what their considerations are upon integrating the personal into the professional realm. Design/methodology/approach As part of a qualitative participatory research approach, participant observations during two years in peer supervision sessions (15 ses...

This article provides an example of experiential learning and includes a video with music and sound to demonstrate collective and individual responses to Covid-19.

The setting between 2015 and 2020 a medical assessment team evaluated 27 reports of prayer healing in the Netherlands. Objectives Three research questions were formulated. What are the medical and experiential findings? Are there medically remarkable and/or unexplained healings? Which explanatory frameworks can help us understand the findings? Me...

Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the...

Photovoice is a widely used approach for community participation in health promotion and health promotion research. However, its popularity has a flip-side. Scholars raise concerns that photovoice drifts away from its emancipatory roots, neglecting photovoice's aim to develop critical consciousness together with communities. Our four-year photovoic...

A small movement, a large voice: The power of a visual research method. User involvement in health care research is based on the notion of the human being as an autonomous and speaking subject with a voice. However, not everybody is able to express their experiences in words. In our arts-based participatory health research project on attuning care...

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new eth...

Background The aim of this study was to evaluate the perceived changes of an innovative workplace health promotion intervention and evaluation. In this study, a bottom-up approach was taken to define the central themes and relevant outcomes of an intervention. These central themes and relevant outcomes of the intervention were defined together with...

Background: A growing body of evidence suggests the positive impact of arts on health and wellbeing. The mechanisms underlying the impact however, remain overlooked. Methods: 38 Semi-structured interviews were held with 30 older adults and 10 artists, involved in five participatory art projects in the Netherlands. Case-based framework and cross-...

The paper presents an alternative conceptualization of participation in order to offer legitimation and guidance for (new) scholars, policymakers and citizens, and to prepare them for the work that needs to be done to develop genuine participation practices that bring about positive change. Metaphors like the participation ladder not only explain a...

Due to its major impact on Dutch care homes for older people, the COVID-19 pandemic has presented care staff with unprecedented challenges. Studies investigating the experiences of care staff during the COVID-19 pandemic have shown its negative impact on their wellbeing. We aimed to supplement this knowledge by taking a narrative approach. We drew...

Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid resea...

Photovoice, a way of conducting research through pictures, is considered a child-friendly method to engage children in participatory research and social change but this practice can raise ethical dilemmas. These dilemmas have rarely been discussed in the literature. The aim of this article is to provide insight into the ethical dilemmas we faced us...

Introduction: Nowadays the Western mental health system is in transformation to recovery-oriented and trauma informed care in which experiential knowledge becomes incorporated. An important development in this context is that traditional mental health professionals came to the fore with their lived experiences. From 2017 to 2021, a research project...

Participatory Health Research (PHR) and related participatory action research approaches share the normative ideals of transformation, social justice, and inclusion. PHR researchers seek, together with people who are involved in an issue, to make a difference and improve local situations. Ethics is at the core of this type of inclusive research. Th...

Can thwarted belongingness and perceived burdensomeness, risk factors for suicidal adolescents, be turned around by family group conferences? In this case study on Nick, a 17-year-old who undertook six suicide attempts, we (including Nick) share insights and learning opportunities on how family group conferences can be used. The thematic analysis s...

Purpose This study aims to explore the perspectives of mental health professionals who are in a process of integrating their own experiential knowledge in their professional role. This study considers implications for identity, dilemmas and challenges within the broader organization, when bringing experiential knowledge to practice. Design/methodo...

An emerging body of research indicates that active arts engagement can enhance older adults’ health and experienced well-being, but scientific evidence is still fragmented. There is a research gap in understanding arts engagement grounded in a multidimensional conceptualization of the value of health and well-being from older participants’ perspect...

Samenvatting Mensen in armoede worden steeds vaker actief betrokken bij projecten in gemeenten en zorg- en welzijnsinstellingen. Meepraten op beleids- en programmaniveau is echter minder vanzelfsprekend. Gezondheidsfonds FNO experimenteerde de afgelopen jaren met het betrekken van moeders in een achterstandssituatie bij het programma Gezonde toekom...

Background: Participatory health research (PHR) is a research approach in which people, including hidden populations, share lived experiences about health inequities to improve their situation through collective action. Boundary objects are produced, using arts-based methods, to be heard by stakeholders. These can bring about dialogue, connection,...

Participatory health research (PHR) and the use of arts-based methods continues to grow in popularity. Many scholars acknowledge the importance of (visual) ethics, especially in the dissemination of photographs in a digital age, but ethical issues that arise in relation to contact with the press and social media are not well documented. This articl...

Aim to enhance the understanding of documented mismatches between ‘subjective’ experiences and ‘objective’ data in three cases of self-reported instantaneous healing of hearing impairment upon prayer. Method description of three cases taken out of a larger retrospective case-based study of prayer healing in the Netherlands. In this larger study mu...

Social inclusion policies often assume that community integration is beneficial for all people with disabilities. Little is known about what actually happens in encounters between people with and without severe intellectual disabilities in the public space. Based on social-constructionist and responsive-phenomenological insights, we performed parti...

Aim: The purpose of this article is to enhance our understanding of prayer healing by studying a case which was described as a 'remarkable healing' by a medical assessment team at the Amsterdam University Medical Centre (UMC) in the Netherlands. Method: This retrospective, case-based study of prayer healing investigated numerous reported healings...

Eldercare professionals engaged in precarious work in the Netherlands faced shortages in personal protective equipment (PPE), testing, and staffing during the COVID-19 pandemic. This qualitative study of the health, financial situations, and paid and unpaid caring responsibilities of freelance eldercare workers illustrates how labor market inequali...

Background Although fatigue among the dialysis population is known as a severe and debilitating health problem, this symptom is often under recognized and undertreated. Objective This qualitative study aimed to gain a better understanding of how dialysis nurses and renal health professionals perceive and address dialysis patient's fatigue in renal...

The production of knowledge is considered to be the domain of adults and experts. Participatory arts-based research engages children in the process of knowledge production. It resonates with the normative ideals of critical pedagogy to create a space for children to express their voice and become a subject of power in order to contribute to social...

Purpose: Self-managed institutional homeless programmes started as an alternative to regular shelters. Using institutional theory as a lens, we aim to explore the experiences of stakeholders with the institutional aspects of a self-managed programs. Method: The data we analysed (56 interviews, both open and semi-structured) were generated in a long...

Purpose: The purpose of this article is to show case study research focused on persons as a case and our personal engagement with the case can improve our innerstandings and understanding of person-centred care. Method: We present the methodology and epistemology of naturalistic case study research and illuminate this approach with the case study o...

Objective: This article explores the use of experiential knowledge by traditional mental health professionals and the possible contribution to the recovery of service users. Design and Methods: The review identified scientific publications from a range of sources and disciplines. Initial searches were undertaken in databases PsycINFO, PubMed, and C...

Self-managed shelters claim that participants who have been homeless are better able to run a shelter than regular providers. Little research has investigated self-managed shelters. In this article, we have described the experiences of participants and peer workers with empowerment processes in Je Eigen Stek (Your own place, JES), a self-managed sh...

Participatory action research (PAR) advocates end-user involvement in various societal domains. This paper aims to identify and analyse impacts of PAR involving older persons as co-researchers, and how these impacts spread and are enhanced throughout the research process and after its completion. By impact we mean transformational change throughout...

Objectives: The incidence of burnout in medical students and residents continues to outpace that of the general population. Self-compassion, a concept in the study of well-being, may moderate against adverse mental health outcomes. The aim of this study is to extend prior research by investigating self-compassion levels in relation to sociodemograp...

Participatory and responsive approaches to research strive to be democratic, inclusive and impactful. Participatory researchers share a commitment to epistemic justice and actively engage citizens and users as well as other stakeholders in the co-creation of knowledge for social change. While more and more researchers and policymakers feel attracte...

Several studies have reported on the negative impact of interruptions and distractions on anaesthetic, surgical and team performance in the operating theatre. This study aimed to gain a deeper understanding of these events and why they remain part of everyday clinical practice. We used a mixed methods observational study design. We scored each dist...

Qualitative researchers are more and more keen to have social impact and make their research actionable. Participatory health research (PHR) involves people who live in vulnerable situations and fosters collaboration with other stakeholders, including policy-makers, to improve the health and well-being of those whose lives are at stake. People who...

Co-production and service user involvement are increasingly encouraged in mental health care research. However, power hierarchies in knowledge can affect the co-production of knowledge by stakeholders. Therefore, the purpose of this article is to deepen our understanding of the relational dynamics at stake in co-researching teams and larger groups...

The authors wish to make the following corrections to the above-mentioned published paper [1]: During production, an error occurred in the layout of Figure 1 ‘Learning impact of KLIK, as self-assessed by the children’ on page 6 [...]

Participant empowerment is a foundational goal of self‐organised homeless care. We aim to understand how a self‐organised setting contributes to participants' empowerment. The data we analysed (56 interviews, both open and semi‐structured) were generated in a longitudinal participatory case study into Je Eigen Stek (Your own place, JES), a low‐cost...

Recently, several authors have called for a critical assessment of the normative dimensions of evaluation practice. This article responds to this call by demonstrating how evaluation practice can be enriched through deliberate engagement with care ethics. Care ethics has a relational and practice view of morality and places caring relationships and...

The popularity of Participatory Action Research (PAR) increases the risk of tokenism and blurring the boundaries of what might be considered ‘good’ PAR. This became a pressing issue when we were invited by the City of Amsterdam to conduct PAR on digital inequality with vulnerable citizens in Amsterdam, within serious constraints of time and budget....

This is the full Position Paper of the ICPHR on the Impact of Participatory Health Research. Contents 1. INTRODUCTION 1.1 What is participatory health research? 1.2 Positioning impact in PHR 1.3 Defining impact in PHR 1.4 Locating impact in PHR 1.5 Scale and impact 2. JOURNEYING TO IMPACT: THE DRIVERS 2.1. Building Relationships: facilitating comm...

Background: Large health inequalities exist in the Netherlands among individuals with a high compared to a low socioeconomic position. Worksite health promotion interventions are considered promising to reduce these inequalities, however, current interventions seem not to have the desired effects. This study proposes 'moral case deliberation', a f...

Empowerment of people in challenging circumstances is a central premise of participatory health research (PHR). Empowerment, a process of strengthening vis-à-vis one's social environment, has three components: personal, relational, and political. The current PHR study was conducted with mothers living in unfortunate situations in the Netherlands. I...

Participatory research on health-related topics with children is promising but current literature offers limited guidance on how to involve children and falls short on the reporting impact. The purpose of this article is to heighten our understanding of the working principles and impact of participatory health research (PHR) with children. We compl...

Objective: This article explores the use of experiential knowledge by traditional mental health professionals and the possible contribution to the recovery of service users. Design and Methods: The review identified scientific publications from a range of sources and disciplines. Initial searches were undertaken in databases PsycINFO, PubMed, and C...

PhD thesis dr. Hannah Leyerzapf

Aims To examine the care practices of nurses during the organization of 20 weeks of walking sessions for people with type 2 diabetes and to reflect on implications for nurse‐patient relationships and nursing responsibilities in the provision of physical activity care. Design Qualitative, ethnographic study. Methods Almost 70 hours of field work w...

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly say that citizen science, in including the public in scientific research, relates to participatory action research and action research. They notice that th...

Many older community-living persons with schizophrenia report unmet psychological and social needs. The Amsterdam-based New Club is a novel facility that intends to foster self-reliance and social participation in this group. To explore participants’ and staff perceptions, a naturalistic qualitative study combined participant observation with inter...

Diverse gemeenten en organisaties experimenteren met de inzet van ervaringsdeskundigen. In 2018 startte in Amsterdam de pilot WerkPlaats Ervaringskennis, een leerplatform voor een groep zogenoemde bijstands-‘klanten’. Hierin verkenden we de stem van ervaringsdeskundigen en gingen in dialoog met professionals en beleidsmakers. Twee lessen uit deze p...

Photovoice is a child-friendly method used in Participatory Health Research (PHR) to put children in a subject position to drive the research and social change. Little is known about the actual experiences of doing photovoice related to health issues in a primary school context regulated by adults. The purpose of this article is to explore how chil...

Dialysis patients commonly experience severe fatigue. Fatigue is known as an intrusive symptom strongly affecting perceived quality of life. A total of 23 interviews were conducted to explore how dialysis patients respond to fatigue symptoms and its consequences in daily life. A constructivist grounded theory approach guided data analysis and conce...

Family Group Conferencing is a new decision model to assign caring responsibilities among various actors in society, including the client, social networks, and professionals. The process of Family Group Conferencing in coercive psychiatry is delicate; nevertheless, it paves the way for courageous conversation, and it facilitates ownership over the...

The dominant notion that exercise is medicine puts a strong normative emphasis on individual responsibility for participation in sport and physical activity. The aim of this article was to explore how people with type 2 diabetes, a condition strongly linked to lifestyle behaviour both in origin and in management, translate this notion into their da...

Participatory action research is often informed by strength-based approaches such as appreciative inquiry. However, when social change and collective action appear to be difficult, feelings of powerlessness and suffering can arise. There is an ongoing debate on the place and importance of these so-called negative emotions within strength-based appr...

Descriptive studies on the experiences of service users in psychiatric emergency wards are increasing. However, the experience of users throughout the whole psychiatric emergency procedure, the ‘patient journey’ from the moment of mental health crisis leading to admission in a psychiatric inpatient unit, has rarely been studied. This article aims t...

Alternatives for coercive treatment in psychiatry, based on partnership between clients, social networks and social workers, need to be given full attention. Despite its potential to inhibit isolation, self-exclusion and reduce coercion, organising Family Group Conferences (FGC) in this field is complex. The process of a FGC may evoke shame and unb...

The collective involvement of patients and clients in health care organizations is valued in our Western society. In practice, giving form to this involvement seems to be a complex process. In this paper we present our learning experiences with a process of enhancing the involvement of older people in a residential care home in the Netherlands, by...