This article explores the potential and challenges of inclusive research methodologies when working with older individuals with lower literacy levels. We present inclusive approaches developed... Show moreThis article explores the potential and challenges of inclusive research methodologies when working with older individuals with lower literacy levels. We present inclusive approaches developed during our research and discuss their implications for methodology and individual well-being among older adults with lower literacy levels. Our key insight is that the promise of inclusive research lies in relational design and praxis. Prioritizing meaningful relationships between researchers and participants, we emphasize the importance of considering participants as active contributors rather than mere informants. Creating a safe and supportive environment fosters trust, empowerment, and meaningful contributions from participants. Flexibility and adaptability in research approaches, including phased informed consent and the minimizing of written language, enhance participants' self-confidence and trust in their own voices. This approach empowers participants in co-creating knowledge, which strengthens the trustworthiness and validity of research results. Inclusive research, while promising, requires researchers to navigate ethical dilemmas, invest time in building rapport, and adapt to participants' needs. It challenges traditional research norms, emphasizing ethical engagement, meaningful participation, and tangible outcomes that benefit both researchers and participants. Employing inclusive research strategies, despite their departure from traditional praxis, ensures that the voices of older individuals with lower literacy levels are respected. This shift enhances the validity of knowledge, promotes co-creation, and fosters feelings of inclusiveness and empowerment. These promises underscore the importance of embracing inclusive research methodologies in contemporary research practices. Show less
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... Show morePurpose 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 observations. Arthur Frank's conceptual framework on embodied storytelling from his book The Wounded Storyteller was the study's theoretical lens. Themes are both described and represented in images made by an RDM participant. Findings Dancing in a nonjudgmental environment was described by participants as a way to rediscover themselves while continually adapting to living with chronic illness. We interpreted this experience of rediscovery as an active, recursive process involving three "movements": escaping, expanding, and embracing. Through these movements, participants could rise above the self and illness. Conclusions The lived experience of dancing in this group was characterized by transformations of the body, self, and life. Through escaping, expanding, and embracing, participants could more easily embrace the body's contingency, integrate the self and body by becoming dancers, connect with others living with illness, and produce desire through passion. Participants could therefore experience illness as a journey and gain something from the experience. Show less
Rede uitgesproken door Prof. dr. Tineke Abma bij de aanvaarding van het ambt van Bijzonder hoogleraar Ouderenparticipatie aan de Universiteit van Leiden op 23 juni 2023
Kruijthoff, D.J.; Bendien, E.; Kooi, C. van der; Glas, G.; Abma, T.A. 2023
The settingbetween 2015 and 2020 a medical assessment team evaluated 27 reports of prayer healing in the Netherlands.ObjectivesThree research questions were formulated. What are the medical and... Show moreThe settingbetween 2015 and 2020 a medical assessment team evaluated 27 reports of prayer healing in the Netherlands.ObjectivesThree 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?MethodsThe reported healings were analyzed using both medical files and patient narratives, as part of a case study research design compiled by a multidisciplinary research team. An independent team of five medical consultants, representing different fields of expertise, evaluated the 27 case files. According to criteria these were selected from a larger group of 83 received reports. Experiential data was obtained by in-depth interviews and analyzed. Instances of healing could be classified as ‘medically remarkable’ or ‘medically unexplained’. Subsequent analysis was transdisciplinary.ResultsEleven of the 27 healings assessed were evaluated as ‘medically remarkable’, none were labelled as ‘medically unexplained’. Recurring characteristics were common to some degree in all healings, whether ‘medically remarkable’ or not: a temporal connection with prayer, instantaneity and unexpectedness of healing, strong emotional and physical manifestations, and a sense of ‘being overwhelmed’ and transformed. The healings were invariably interpreted as acts of God. Positive effects have persisted for 5 to 33 years, with 2 relapses.ConclusionsOur findings on remarkable healings do not fit well in the traditional biomedical conceptual framework. All healings exhibited important non-medical aspects, whether or not they were assessed as medically remarkable. We need a broader multi-perspective approach in which all relevant data is considered to be valuable, both experiential and objective. This so-called horizontal epistemology may be helpful when trying to understand the findings, and it may bring about mutual understanding between patients, health practitioners and relevant disciplines. Show less
Wees, M. van; Duijs, S.E.; Mazurel, C.; Abma, T.A.; Verdonk, P. 2023
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...Show moreWhile 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 masculinities of men working in residential long-term care in the Netherlands, and its consequences for health. Semi-structured interviews (N = 16) were analyzed thematically, drawing upon gender and intersectionality theory to understand inequities between respondents. Findings describe how men move through long-term care. On entry, men negotiated hegemonic and caring masculinities to gain access, with black men having to work harder. Once inside, men experienced status-loss and performed hegemonic masculinity, materializing in financial and sexual rewards, especially for white heterosexual men. In time, this performance of hegemonic masculinity backlashed with respect to their own health; herein racialized and homosexual men were hit harder. Consequently, all the men in this study aspired to move out or up from low-paid care work, with white heterosexual men doing so more successfully. Our study illustrates the importance of an intersectional perspective on caring masculinities at work, showing how caring masculinities perpetuate male privilege for some men more than for others, creating health and labor market inequities among men. In terms of health, this study shows that gender, racism and sexual discrimination need be on the occupational health agenda. Show less
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... Show moreBackground: 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: To test the feasibility and to improve ImRs by understanding the experiences and perspectives of people with an ED and PTSD who, when underweight, received ImRs as an adjunct to their inpatient ED treatment. Method: To explore how underweight people with an ED experience and perceive ImRs, we used a qualitative study design involving semi-structured interviews with 12 participants. After analysis, the data were summarized and classified within a thematic framework that focused on experiences and improving the ImRs method. Results:The thematic analysis resulted in the following 6 main themes; (1) Expectations of ImRs; (2) Ability to participate in ImRs; (3) Effect of ImRs; (4) Experience of ImRs technique; (5) Conditions under which ImRs is given; (6) In depth-analysis. The results show that despite the fear of disappointment the participants appreciate addressing the PTSD and ED symptoms simultaneously. Further, results showed that it had been possible for them to attend ImRs but that the effects of ImRs were not uniformly perceived. Also, participants indicated that a caring context is important and that ImRs should not be scheduled immediately before a meal. Finally, the treatment generated hope. Conclusions: The findings of this study demonstrated the feasibility of the integration of ImRs trauma treatment for individuals who are being treated in an ED inpatient treatment setting, and are in contrast to standard practice where the focus of inpatient treatment has been ED-symptom improvement without comprehensively addressing past traumatic experiences during an underweight phase. Show less
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... Show moreThe 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 one arts initiative, a theatre company engaging seniors in the Netherlands, using ethics and aesthetics of care as sensitising concepts. The findings reveal that this work can promote relational forms of care. This study makes visible how different forms of care can be identified in a participatory art project. Show less
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... Show morePurpose: 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 sessions with 8 psychiatrists with lived experiences), additional interviews as part of member feedback and a focus group were thematically analysed. Findings: Although the decision to become a psychiatrist was often related to personal experiences with mental distress and some feel the need to integrate the personal into the professional, the actual use of lived experiences appears still in its early stages of development. Findings reveal three main considerations related to the personal (3.1), professionality (3.2) and clinical relevance (3.3) comprising 11 facilitators and 9 barriers to harness lived experiences. Research limitations/implications: This study was conducted locally and there are no similar comparable studies known. It was small in its size due to its qualitative nature and with a homogeneous group and therefore may lack generalisability. Practical implications: Future directions to further overcome shame and stigma and discover the potential of lived experiences are directed to practice, education and research. Originality/value: Psychiatrists with lived experiences valued the integration of experiential knowledge into the professional realm, even though being still under development. The peer supervision setting in this study was experienced as a safe space to share personal experiences with vulnerability and suffering rather than a technical disclosure. It re-sensitised participants to their personal narratives, unleashing its demystifying, destigmatising and humanising potential. Show less
Dohmen, M.D.W.; Eijnde, C. van den; Thielman, C.L.E.; Lindenberg, J.; Huijg, J.M.; Abma, T.A. 2022
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... Show moreDue 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 upon 424 personal narratives written by care staff during their work in a Dutch care home during the COVID-19 pandemic. Firstly, our results show that care staff have a relational-moral approach to good care. Residents' wellbeing is their main focus, which they try to achieve through personal relationships within the triad of care staff-resident-significant others (SOs). Secondly, our results indicate that caregivers experience the COVID-19 mitigation measures as obstructions to relational-moral good care, as they limit residents' wellbeing, damage the triadic care staff-residents-SOs relationship and leave no room for dialogue about good care. Thirdly, the results show that care staff experiences internal conflict when enforcing the mitigation measures, as the measures contrast with their relational-moral approach to care. We conclude that decisions about mitigation measures should be the result of a dialogic process on multiple levels so that a desired balance between practical good care and relational-moral good care can be determined. Show less
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... Show morePurpose 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/methodology/approach As part of a participatory action research approach, qualitative methods have been used, such as in-depth interviews, discussions and observations during training and project team. Findings The actual use of experiential knowledge by mental health care professionals in their work affected four levels: their personal-professional development; the relation with service users; the relation with colleagues; and their position in the organization. Research limitations/implications Because of its limited context, this study may lack generalisability and further research with regard to psychologists and psychiatrists, as well as perceptions from users, is desirable. Social implications According to this study, social change starts from a bottom-up movement and synchronously should be facilitated by top-down policy. A dialogue with academic mental health professionals seems crucial to integrate this source of knowledge. Active collaboration with peer workers and supervisors is desired as well. Originality/value Professionals with lived experiences play an important role in working recovery-oriented, demonstrating bravery and resilience. Having dealt with mental health distress, they risked stigma and rejections when introducing this as a type of knowledge in current mental health service culture. Next to trainings to facilitate the personal-professional process, investments in the entire organization are needed to transform governance, policy and ethics. Show less
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... Show moreParticipatory 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 article presents second-person action research of a critical case of photovoice in which ethical issues arose when a newspaper report reinforced stigma and was widely disseminated via social media. Press and social media can rapidly engage people for social change, but this also presents risks. What is the potential to de-stigmatize in such situations? The context of the case in this article is the participatory KLIK project, a Dutch initiative which aims to improve the health and resilience of school children aged 8-11 years in a deprived neighbourhood. Awareness of the possibility of political listening and viewing is fundamental for an ethical practice. This article shows the importance of co-ownership, media literacy and collaborative learning about ethics in PHR. Show less
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... Show moreSeveral 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 distractor and interruption according to an established scheme during induction of anaesthesia and the surgical procedure for 58 general surgical cases requiring general anaesthesia. We made field notes of observations, small conversations and meetings. We observed 64 members of staff for 148 hours and recorded 4594 events, giving a mean (SD) event rate of 32.8 (16.3) h-1. The most frequent events observed during induction of anaesthesia were door movements, which accounted for 869 (63%) events, giving a mean (SD) event rate of 28.1 (14.5) h-1. These, however, had little impact. The most common events observed during surgery were case irrelevant verbal communication and smartphone usage, which accounted for 1020 (32%) events, giving a mean (SD) event rate of 9.0 (4.2) h-1. These occurred mostly in periods of low work-load in a sub-team. Participants ranged from experiencing these events as severe disruption through to a welcome distraction that served to keep healthcare professionals active during low work-load, as well as reinforcing the social connections between colleagues. Mostly, team members showed no awareness of the need for silence among other sub-teams and did not vocalise the need for silence to others. Case-irrelevant verbal communication and smartphone usage may serve a physical and psychological need. The extent to which healthcare professionals may feel disrupted depends on the situation and context. When a team member was disrupted, a resilient team response often lacked. Reducing disruptive social activity might be a powerful strategy to develop a habit of cross-monitoring and mutual help across surgical and anaesthetic sub-teams. Further research is needed on how to bridge cultural borders and develop resilient interprofessional behaviours. Show less
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... Show moreEldercare 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 inequalities have been (re)produced and exacerbated during the pandemic. Freelancers were pushed toward the margins of the labor market, working risky shifts and compromising their own interests, while unprotected by organizations, social security, or political efforts. Consequently, these workers were stretched to limits where they could no longer attend to their own health or to their paid and unpaid care responsibilities. The study places these empirical findings within Nancy Fraser and Rahel Jaeggi's theoretical work on capitalism, illustrating how eldercare workers found themselves at the center of boundary struggles during the pandemic. Show less
