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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 using grounded theory, we conducted this qualitative empirical research in the Netherlands in 2016–2021. It draws on 14 in-depth interviews. These 14 cases were selected from a group of 27 cases, which were evaluated by a medical assessment team at the Amsterdam University Medical Centre. Each of the participants had experienced a remarkable recovery during or after prayer. The analysis of the interviews, which is based on the grounded theory approach, resulted in three overarching themes, placing possible explanations of the recoveries within (1) the medical discourse, (2) biographical discourse, and (3) a discourse of spiritual and religious transformation. Juxtaposition of these explanatory frameworks provides a way to understand better the transformative experience that underlies remarkable recoveries. Uncertainty regarding an explanation is a component of knowing and can facilitate a dialogue between various domains of knowledge.

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 intersectionality informed qualitative design was used, between 2019 and 2021, with informal conversations (N = 12) and semi-structured interviews (N = 17), to gain insight in how professionals’ perspectives are framed and shaped by aspects of diversity, as well as situational and contextual factors. Two critical friends were involved in either the thematic or the secondary intersectionality informed analysis which was substantiated by a participatory analysis in a community of practice. Results We identified four interrelated themes: (a) “The difficult Other” in which professionals reflected on caregivers and care-recipients with a migration background causing ‘difficulties’; (b) “The dependent Other” refers to professionals’ realization that ‘difficulties’ are intensified by the context in which care takes place; (c) in “The uncomfortable self” professionals describe how feelings of insecurities evoked by the Other are associated with an inability to act ‘professionally’, and; (d) “The reflexive self” shows how some professionals reflect on their own identities and identify their blind spots in collaboration within a care network. Conclusion These interrelated themes offer an explanation of evidenced health inequalities in diverse networks and a pathway to unsettle the Self-Other binary. We conclude there is a need for educational curricula and professionals to invest in the integration of such reflexive practices to ensure health equalities for all. Impact The integration of reflexive practices in healthcare curricula is needed as diversity responsive care requires a critical investigation of oneself as professional. Public Contribution Caregivers, patients with acquired brain injury and different healthcare professionals were involved in the study design and interpretation of the data.

De gezondheid van zorgverleners in de ouderenzorgstaat onder druk. Veel mensen houden zichbezig met de vraag: hoe kunnen we goed zorgenvoor zorgverleners? Wat hebben zij nodig om hetvol te houden? Dit boek is het resultaat van vier jaar participatiefactieonderzoek ‘Gezond Zorgen’ (2018-2022).Hierin dedenonderzoekers, zorgverleners en een fotograafsamen onderzoek naar de gezondheid vanlaagbetaalde zorgverleners in de ouderenzorg. De essentie van vier jaar onderzoek is samengevatin vier portretten.Deze portretten gaan over dat ‘wat je niet ziet’.Over de verborgen en verzwegen redenen diede gezondheid van zorgmedewerkers onder drukzetten. Dit boek is een doe-boek. Een uitnodigingom naar de stilte te luisteren en de onzichtbareredenen zichtbaar en bespreekbaar te maken op de werkvloer. Zodat alle zorgverleners gezond kunnen blijven zorgen. Deze publicatie is mogelijk gemaakt door ZonMw, binnen het Kennisprogramma Gender en Gezondheid 2018- 2022 (Negotiating health: the interplay between health, labour participation and informal care responsibilities from an intersectional perspective, grant number849200012). Deze publicatie is tot stand gekomen tijdens een vierjarig participatief actieonderzoek. Meer lezen over het onderzoeksproces? In onderstaande artikelen vertellen we onderzoekers over het proces en reflecteren ze op de methodologische uitdagingen van participatief actieonderzoek en photovoice. ZonMw(2022) De verborgen oorzaken van gezondheidsproblemen bij laagbetaalde ouderenzorgmedewerkers. https://publicaties.zonmw.nl/de-verborgen-oorzaken-van-gezondheidsproblemen-bij-laagbetaalde-ouderenzorgmedewerkers/ Duijs, S. E., Abma, T., Schrijver, J., Bourik, Z., Abena-Jaspers, Y., Jhingoeri, U., Plak, O., Senoussi, N.& Verdonk, P. (2022). Navigating Voice, Vocabulary and Silence: Developing Critical Consciousness in a Photovoice Project with (Un) Paid Care Workers in Long-Term Care.International Journal of Environmental Research and Public Health,19(9), 5570.https://doi.org/10.3390/ijerph19095570

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 family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time.

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 photovoice project aimed to unravel how the health of (un)paid care workers was shaped at the intersection of gender, class and race. This article springs from first, second and third-person inquiry within our research team of (un)paid care workers, academic researchers and a photographer. We observed that critical consciousness emerged from an iterative process between silence, voice and vocabulary. We learned that photovoice scholars need to be sensitive to silence in photovoice projects, as silence can be the starting point for finding voice, but also a result of silencing acts. Social movements and critical theories, such as intersectionality, provide a vocabulary for participants to voice their critical perspectives to change agents and to support collective action. We discuss our experiences using Frickers’ concept of ‘epistemic justice’, arguing that critical consciousness not only requires that communities are acknowledged as reliable knowers, but that they need access to interpretative tropes to voice their personal experiences as structural.

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 research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions (n = 404 patients), and dialogue sessions (n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.

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-over analyses were done on the basis of Cousins et al.’s taxonomy. Results: Participatory art initiatives contributed to the wellbeing of older adults in a complex interplay with the artist, art form, group of participants, material aspects and continuity of activities. A welcoming environment appeared a consistent underlying mechanism for participants to grow on a personal and artistic level, connect with others and feel supported in their psychosocial wellbeing. Conclusion: This article demonstrates the important social function participatory art can have for older adults, and argues for the importance of a thorough consideration of the context wherein underlying mechanisms and outcomes emerge.

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 and policy makers express concerns about this development, as self-employment is seen as a risk factor for poor health. Self-employment is not necessarily precarious work but can contribute to the precariousness of specific groups. Knowledge about inequities among self-employed nurses and nursing aides in long-term care is lacking. Design: A participatory, qualitative interview study. The research team consisted of four academic researchers and five (un)paid care workers. Methods: Semi-structured interviews with 23 self-employed nurses and nursing aides in LTC (2019–2020). Data were analysed from an intersectional perspective. Results: First, we describe that feeling precarious as a hired employee—due to increasing workloads, health risks, poverty and discrimination—shapes care workers' choice for self-employment. Second, we describe inequities between self-employed care workers who could (financially) afford to turn to self-employment as a health strategy and those who felt squeezed out of the organizations due to poverty or discrimination. They more often dealt with precarious work in the context of precarious lives, negatively impacting their health. Third, we describe how negotiating an entrepreneurial identity with a caring identity required material sacrifices and thus contributed to self-employed care workers' financial precariousness, particularly as women. Conclusion: Our findings indicate that working in LTC is becoming increasingly precarious for all care workers, both for hired and self-employed, with younger, lower-paid and racialized women with unpaid caring responsibilities seemingly most at risk for precariousness. Impact: Our findings urge policy makers and care organizations to develop gender and diversity-sensitive policy responses to address these inequities.

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.

>Objective To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy. Methods This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions. Results Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (±SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1) as was caregivers'mean SF-36v2 mental component score (MCS; 46.2±10.7 vs. 50.0±10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130. Conclusion SJIA patients on biologic therapy experience HRQOL impairment, caregivers'mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.

The number of descriptive studies on the experiences of service users in psychiatric emergency wards is increasing. However, the experiences of users throughout the whole psychiatric emergency procedure, the “patient journey” from the moment of mental health crisis to admission to a psychiatric inpatient unit, have rarely been studied. Furthermore, there is little research on perceived solutions for improvement of the “patient journey” from different perspectives (those of service users and other stakeholders such as health care professionals, family members, police, representatives of the municipality, and ambulance staff). A responsive evaluation including interviews, focus groups and a dialogue session with a transformative aim was conducted in a mixed team of researchers with and without experiential knowledge. Service users and other stakeholders agreed on two main issues that needed to be improved: making contact with service users on the “patient journey”, and better signaling of a crisis. The third main issue about more focus on recovery in the emergency ward was contested, as some stakeholders prioritized safety. Proposed actions for improvement of these issues differed between users and professionals. Service users proposed relational actions to offer good care. Professionals recommended actions in response to issues of fragmentation and discontinuity in the organization of care. We conclude that co-creation with service users in improvement is necessary to address their needs and tackle the complexity of psychiatric emergency care. Therefore, by utilizing Tronto’s ethics of care model, we recommend that various actions need to be considered to meet the needs of service users.

>Objective To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy. Methods This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions. Results Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (±SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1) as was caregivers'mean SF-36v2 mental component score (MCS; 46.2±10.7 vs. 50.0±10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130. Conclusion SJIA patients on biologic therapy experience HRQOL impairment, caregivers'mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.

Co-occupation refers to activities that require the participation of two or more people. While knowledge about co-occupation is expanding, few empirical studies have sought to advance the understanding of co-occupation in late life. The current study used interview data from one couple who participated in a longitudinal 2-year qualitative study among community-dwelling older couples plus photographs taken of them engaged in one of their most valued co-occupations: going for a walk together. The couple selected photographs, discussed the meanings they attributed to them and created a photo story. The photo selection and interview transcripts were analysed using Interpretative Phenomenological Analysis. The findings consist of the couple's photo story and four themes that represent the meanings of this co-occupation: (1) Together but also individual; (2) It has always been like that; (3) Experiencing freedom and (4) Being eager to come across new things. The findings have implications for understanding the concept of co-occupation by bringing the importance of personalised meanings in co-occupation to the fore and by suggesting the importance of continuity of meanings of co-occupation for maintaining both individual and couple identities. Maintaining meaningful co-occupation might thereby contribute to health and well-being in late life. © 2012 Taylor & Francis Group, LLC. All rights reserved.

issues of ethnicity, race and culture. In line with the advice offered by Betancourt and Lopez for the field of psychology, we believe we should aim to advance understanding of the role of culture in medical education and to contribute to theory development and application in two ways: firstly, by enhancing experimentation and the use of theory in cross-cultural research (bottom-up), and, secondly, by infusing the study of culture in mainstream research (top-down).

According to Dutch law, patients have the right to comprehensible communication. However, professional interpreters are not being used sufficiently: health care providers often do not recognize when language barriers interfere with comprehension. The use of professional interpreters declined even further when the Dutch government withdrew its funding for medical interpreters in January 2012. Additionally, the government's stance that non-native speakers have to master the language and organize translating help when needed seems to have given a signal to health care providers that this is not their responsibility. Nonetheless, health care providers are obliged by law to provide comprehensible information. Therefore, it is important to provide proper training so they can recognize language barriers and know when a professional interpreter is necessary. In addition, a financial aid system needs to be developed for those patients who cannot reasonably be expected to have mastered the language.

To investigate experiences of residents, their family caregivers and nursing staff in group living homes for older people with dementia and their perception of the care process.Traditional nursing homes for people with dementia have several shortcomings related to depersonalisation, passivity, loss of skills and use of physical restraints. Group living homes are seen as an alternative to regular nursing homes, but experiences with this new care setting have rarely been investigated.The study followed a naturalistic design. Qualitative data were collected over a period of 6 months in two group living homes located in the southern part of the Netherlands.Systematic participatory observations were carried out during daily life, care and activities in both homes. In addition, semi-structured interviews were held with residents, their family and nursing staff. These data were inductively analysed and related to Tronto's care ethical framework.According to all parties, group living homes create structural opportunities for individualised care and attention to the residents' personal needs. The increased attentiveness and responsiveness for residents' well-being was seen as a sign of good care and fits with the phases of caring about and receiving care of Tronto's care ethical model. However, tensions occurred relating to the phases of taking responsibility and carrying out care. Not all residents and family members want or are able to take responsibility and perform self-care.Group living homes create conditions for good care and stimulate attentiveness and responsiveness. Tensions in these homes may relate to the new division of responsibilities and tasks. Values of attention to needs and responsiveness are of high importance for nursing staff to provide good care for people with dementia in a nursing home setting.

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community.

Beste Jasmijn

Het essay van Harrie Jansen schetst een ontwikkeling van het kwalitatieve onderzoek waarin ik me kan vinden. De ontstane polarisatie tussen kwalitatief en kwantitatief onderzoek is niet vruchtbaar. Als kwalitatieve onderzoekers hebben we ons vaak afgezet tegen kwantitatief georiënteerde onderzoekers in een poging om onze werkwijze te verduidelijken. We hebben collega-onderzoekers daarmee soms van ons afgedreven. Ze herkenden zich niet in onze weergave van hun onderzoek. Wegen voor samenwerking werden zo afgesloten. Gevolg was ook dat we het kwalitatieve onderzoek teveel op een hoop gooiden, waardoor we het zicht op de verschillende richtingen en varianten binnen het kwalitatieve onderzoek kwijtraakten.

Metafoor tussen methode en magie is een proefschrift van Heidi Muijen over creatieve trajecten en werkvormen in de geestelijke gezondheidszorg en het organisatiewezen. Aanleiding vormde de opkomst van creativiteit en creatieve werkvormen in beide sectoren. In de geestelijke gezondheidszorg weerspiegelt deze ontwikkeling zich in het werken met beeldende vormgeving, muziek en dans. Creatieve therapie staat echter steeds meer onder druk nu bedrijfsmatige concepten hun intrede doen in de gezondheidszorg en efficiency en effectiviteit dominante parameters zijn geworden. In de wereld van de management- en organisatieconsultancy winnen creatieve trainingen terrein, in de vorm van bijvoorbeeld survivaltochten en de 'techniek' van het metaforisch herkaderen van (organisatie)problemen. En ook op het terrein van coaching en advies is het niet langer ongebruikelijk om met beeldende middelen te werken.