BackgroundThere is an increased interest in the role artists can play in care for older people. This momentum comes with the need to closer investigate the nature of boundary work of creative... Show moreBackgroundThere is an increased interest in the role artists can play in care for older people. This momentum comes with the need to closer investigate the nature of boundary work of creative professionals in arts and health projects.MethodsWe conducted a responsive evaluation to provide a thick description of the boundary work involved in ENCOUNTER#9, an intergenerational arts project taking place within an older person care setting.ResultsBoundary work proved to be rewarding, yet messy and unruly. Although the lead artist had carefully planned and prepared the project and gained a broad commitment, not everything went according to plan. This led to friction and all involved put effort into adjusting goals and expectations.ConclusionWe add to the conceptualisation of boundary work in arts and health by showing that it takes place on different levels: personal, relational, organisational and public. Show less
Groot, B.; Hendrikx, A.; Bendien, E.; Woelders, S.; Kock, L. de; Abma, T. 2023
BackgroundAcademics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal... Show moreBackgroundAcademics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal information (e.g., interviews, focus groups) but also employ an attunement to the non-verbal - such as participant observation and creative methods, are seen as a suitable way to do justice to people's non-verbal interactions. However, in practice, researchers still experience ethical issues in everyday encounters with participants with cognitive and/or language impairment even when trying to address epistemic issues while employing such methods. This article aims to demonstrate 1) the importance of attending to the non-verbal in order to prevent epistemic injustice in research and 2) how a case-study approach and discussing ethical dilemmas with peers may help to unpack some of the ethical tensions that the researchers experience.Aim and methodsThis article focuses on ethical dilemmas the authors encountered during their research projects in the past. Three cases chosen by the authors illustrate these dilemmas. Dilemmas are presented as auto-ethnographical written accounts, which were discussed during ten retrospective dialogical sessions (60–90 min) organized by the research group consisting of six academic researchers.ResultsEthically sound research, in which older people living with cognitive and/or language impairment are engaged, entails much more than following procedures about informed consent, privacy, submitting a proposal to an ethics committee, and using suitable methods and techniques. Ethical issues in these studies relate to everyday situations in which researchers tried to do justice to the knowledge of people who have difficulties expressing themselves verbally, but were challenged by what they have initially experienced as ‘having it wrong,’ ‘not knowing,’ and ‘losing something in translation’ in their practice. Finally, we learned that the interactions the researchers encountered were complex. They had to constantly evaluate the appropriateness of their approach, balance rational and intuitive forms of interaction and interpretation, and consider ways of communicating the research findings.Discussion and conclusionApproximating epistemic justice in research with people with cognitive and/or language impairment requires extra effort in daily research routines. Sharing everyday ethical issues via case stories and reflecting on these issues encourages moral learning and brings new knowledge about the craftsmanship of researchers. Especially the collaborative and dialogical reflection helped the researchers to dig deeper and find words for intangible processes that often remain unaddressed. However, sharing stories about ethical issues requires mutual trust and safety because sharing and reflecting may bring discomfort, messiness, and uncertainty. 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
Groot, B.; Kock, L. de; Liu, Y.S.; Dedding, C.; Schrijver, J.; Teunissen, T.; ... ; Abma, T. 2021
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... Show moreAn 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' perspectives. This Dutch nation-wide study aimed to explore the broader value of arts engagement on older people's perceived health and well-being in 18 participatory arts-based projects (dance, music, singing, theater, visual arts, video, and spoken word) for community-dwelling older adults and those living in long term care facilities. In this study, we followed a participatory design with narrative- and arts-based inquiry. We gathered micro-narratives from older people and their (in)formal caregivers (n = 470). The findings demonstrate that arts engagement, according to participants, resulted in (1) positive feelings, (2) personal and artistic growth, and (3) increased meaningful social interactions. This study concludes that art-based practices promote older people's experienced well-being and increase the quality of life of older people. This study emphasizes the intrinsic value of arts engagement and has implications for research and evaluation of arts engagement. Show less
Verhage, M.; Thielman, L.; Kock, L. de; Lindenberg, J. 2021
Objectives: Globally, mitigation measures during the coronavirus disease 2019 (COVID-19) pandemic have focused on protecting older adults. Earlier disaster studies have shown the importance of... Show moreObjectives: Globally, mitigation measures during the coronavirus disease 2019 (COVID-19) pandemic have focused on protecting older adults. Earlier disaster studies have shown the importance of including older peoples’ voices to prevent secondary stressors, yet these voices have received little attention during this pandemic. Here, we explore how Dutch older adults view this crisis and cope with measures to contribute to our understanding of coping of older adults in general and during disaster situations more specifically.Method: Qualitative study using semistructured telephone interviews with 59 diverse older adults aged 54–95 throughout the Netherlands.Results: Older adults typify this crisis as ungraspable, disrupting their daily and social lives. Despite filling their lives with activities, they experience loss or lack of purpose. They try to follow measures to decrease infection risk and gain control, and use problem- and emotion-focused coping strategies. Emotion-focused strategies used were interpreting their personal vulnerability, self-enhancing comparisons, acceptance, and distraction. In the latter 2 strategies, the temporary nature of measures was emphasized.Discussion: Older adults describe this crisis consistently with earlier findings from disaster studies. They use known coping strategies, but emphasize the duration in relation to their expectation of temporality. This underscores a dynamic, proces- sual approach toward coping that incorporates temporal dimensions such as duration and order. Our findings stress the importance of acknowledging heterogeneity among older adults and adjusting communication about mitigation measures to decrease insecurity and increase resonance. This may make COVID-19 mitigation measures more manageable and age- responsible and allow older adults to start living again. Show less
Tuin, K. van der; Kock, L. de; Kamping, E.J.; Hannema, S.E.; Pouwels, M.J.M.; Niedziela, M.; ... ; Morreau, H. 2019
Context: DICER1 syndrome is a rare autosomal-dominantly inherited disorder that predisposes to a variety of cancerous and noncancerous tumors of mostly pediatric and adolescent onset, including... Show moreContext: DICER1 syndrome is a rare autosomal-dominantly inherited disorder that predisposes to a variety of cancerous and noncancerous tumors of mostly pediatric and adolescent onset, including differentiated thyroid carcinoma (DTC). DTC has been hypothesized to arise secondarily to the increased prevalence of thyroid hyperplastic nodules in syndromic patients.Objective: To determine somatic alterations in DICER1-associated DTC and to study patient outcomes.Design: Retrospective series.Setting: Tertiary referral centers.Patients: Ten patients with germline pathogenic DICER1 variants and early-onset DTC.Methods: Somatic DICER1 mutation analysis, extensive somatic DNA variant and gene fusion analyses were performed on all tumors.Results: Median age at DTC diagnosis was 13.5 years and there was no recurrent or metastatic disease (median follow-up, 8 years). All thyroid specimens showed diffuse nodular hyperplasia with at least one focus suspicious of DTC but without infiltrative growth, extrathyroidal extension, vascular invasion, or lymph node metastasis. Most of the individual nodules (benign and malignant) sampled from the 10 tumors harbored distinct DICER1 RNase IIIb hotspot mutations, indicating a polyclonal composition of each tumor. Furthermore, nine of 10 DICER1-related DTCs lacked well known oncogenic driver DNA variants and gene rearrangements.Conclusion: On the basis of our clinical, histological, and molecular data, we consider that most DICER1-related DTCs form a low-risk subgroup. These tumors may arise within one of multiple benign monoclonal nodules; thus, hemi-thyroidectomy or, more likely, total thyroidectomy may often be required. However, radioiodine treatment may be unnecessary given the patients' ages and the tumors' low propensity for metastases. Show less
