Towards Becoming an Ecology of Care

Thinking about care in the organization of an ecology is central to the interdisciplinary research group Care Ecologies; found during a lockdown in the spring of 2021 and hosted by ARIAS Platform for Research Through the Arts and Sciences in Amsterdam. In Towards Becoming an Ecology of Care group members Valentina Curandi, Inte Gloerich, Ania Molenda, Maaike Muntinga, Natalia Sanchez Querubin, Nienke Scholts and Marloeke van der Vlugt, offer an initial articulation on their approaches and principles – performative practices, reflection, speculations - of what an ecology of care could be. While each bringing in different understandings of care, staying with those differences shaped the ways in which the agenda of the research group has been (un)settled. To exchange knowledge and experiences, the group uses various on- and off-line frameworks, like presentations and practice sessions. Exploring how activities that sustain a research group – coordinating, meeting, writing and documenting – may be done with care, this paper attempts to present a speculative proposition for functioning as a research ecology on and around care. Bringing into focus what care can do, while being attentive to what is neglected. This is not only done in writing but also becomes visible in the accompanying images compiled of material and immaterial memories. It is an ongoing process, for which the writing of this paper became a catalyst for reflection. While not aiming for clear answers the authors invite themselves and others to become more aware, devising and testing work strategies for care-based practices

Measurement properties of the EQ-5D across four major geriatric conditions: Findings from TOPICS-MDS

Background: As populations age, chronic geriatric conditions linked to progressive organ failure jeopardize health-related quality of life (HRQoL). Thus, this research assessed the validity and applicability of the EQ-5D (a common HRQoL instrument) across four major chronic geriatric conditions: hearing issues, joint damage, urinary incontinence, or dizziness with falls. Methods: The study sample comprised 25,637 community-dwelling persons aged 65 years and older residing in the Netherlands (Data source: TOPICS-MDS, www.topics-mds.eu ). Floor and ceiling effects were examined. To assess convergent validity, random effects meta-correlations (Spearman's rho) were derived between individual EQ-5D domains and related survey items. To further examine construct validity, the association between sociodemographic characteristics and EQ-5D summary scores were assessed using linear mixed models. Outcomes were compared to the overall study population as well as a 'healthy' subgroup reporting no major chronic conditions. Results: Whereas ceiling effects were observed in the overall study population and the 'healthy' subgroup, such was not the case in the geriatric condition subgroups. The majority of hypotheses regarding correlations between survey items and sociodemographic associations were supported. EQ-5D summary scores were lower in respondents who were older, female, widowed/single, lower educated, and living alone. Increasing co-morbidity had a clear negative effect on EQ-5D scores. Conclusion: This study supported the construct validity of the EQ-5D across four major geriatric conditions. For older persons who are generally healthy, i.e. reporting few to no chronic conditions, the EQ-5D confers poor discriminative ability due to ceiling effects. Although the overall dataset initially suggested poor discriminative ability for the EQ-5D, such was not the case within subgroups presenting with major geriatric conditions

Examining the construct and known-group validity of a composite endpoint for the Older Persons and Informal Caregivers Survey Minimum Data Set (TOPICS-MDS); A largescale data sharing initiative

Background Preference-weighted multi-faceted endpoints have the potential to facilitate comparative effectiveness research that incorporates patient preferences. The Older Persons and Informal Caregivers Survey Composite endpoint (TOPICS-CEP) is potentially a valuable outcome measure for evaluating interventions in geriatric care as it combines multiple outcomes relevant to older persons in a single metric. The objective of this study was to validate TOPICS-CEP across different study settings (general population, primary care and hospital). Methods Data were extracted from TOPICS Minimum Dataset (MDS), a pooled public-access national database with information on older persons throughout the Netherlands. Data of

Implementing the chronic care model for frail older adults in the Netherlands: study protocol of ACT (frail older adults: care in transition)

<p>Abstract</p> <p>Background</p> <p>Care for older adults is facing a number of challenges: health problems are not consistently identified at a timely stage, older adults report a lack of autonomy in their care process, and care systems are often confronted with the need for better coordination between health care professionals. We aim to address these challenges by introducing the geriatric care model, based on the chronic care model, and to evaluate its effects on the quality of life of community-dwelling frail older adults.</p> <p>Methods/design</p> <p>In a 2-year stepped-wedge cluster randomised clinical trial with 6-monthly measurements, the chronic care model will be compared with usual care. The trial will be carried out among 35 primary care practices in two regions in the Netherlands. Per region, practices will be randomly allocated to four allocation arms designating the starting point of the intervention. <it>Participants</it>: 1200 community-dwelling older adults aged 65 or over and their primary informal caregivers. Primary care physicians will identify frail individuals based on a composite definition of frailty and a polypharmacy criterion. Final inclusion criterion: scoring 3 or more on a disability case-finding tool. <it>Intervention</it>: Every 6 months patients will receive a geriatric in-home assessment by a practice nurse, followed by a tailored care plan. Expert teams will manage and train practice nurses. Patients with complex care needs will be reviewed in interdisciplinary consultations. <it>Evaluation</it>: We will perform an effect evaluation, an economic evaluation, and a process evaluation. Primary outcome is quality of life as measured with the Short Form-12 questionnaire. Effect analyses will be based on the “intention-to-treat” principle, using multilevel regression analysis. Cost measurements will be administered continually during the study period. A cost-effectiveness analysis and cost-utility analysis will be conducted comparing mean total costs to functional status, care needs and QALYs. We will investigate the level of implementation, barriers and facilitators to successful implementation and the extent to which the intervention manages to achieve the transition necessary to overcome challenges in elderly care.</p> <p>Discussion</p> <p>This is one of the first studies assessing the effectiveness, cost-effectiveness and implementation process of the chronic care model for frail community-dwelling older adults.</p> <p>Trial registration</p> <p>The Netherlands National Trial Register NTR2160.</p

Effectiveness and cost-effectiveness of proactive and multidisciplinary integrated care for older people with complex problems in general practice: An individual participant data meta-analysis

Purpose: to support older people with several healthcare needs in sustaining adequate functioning and independence, more proactive approaches are needed. This purpose of this study is to summarise the (cost-) effectiveness of proactive, multidisciplinary, integrated care programmes for older people in Dutch primary care. Methods design: individual patient data (IPD) meta-analysis of eight clinically controlled trials. Setting: primary care sector. Interventions: combination of (i) identification of older people with complex problems by means of screening, followed by (ii) a multidisciplinary integrated care programme for those identified. Main outcome: activities of daily living, i.e. a change on modified Katz-15 scale between baseline and 1-year follow-up. Secondary outcomes: quality of life (visual analogue scale 0-10), psychological (mental well-being scale Short Form Health Survey (SF)-36) and social well-being (single item, SF-36), quality-adjusted life years (Euroqol-5dimensions-3level (EQ-5D-3L)), healthcare utilisation and cost-effectiveness. Analysis: intention-to-treat analysis, two-stage IPD and subgroup analysis based on patient and intervention characteristics. Results: included were 8,678 participants: median age of 80.5 (interquartile range 75.3; 85.7) years; 5,496 (63.3%) women. On the modified Katz-15 scale, the pooled difference in change between the intervention and control group was -0.01 (95% confidence interval -0.10 to 0.08). No significant differences were found in the other patient outcomes or subgroup analyses. Compared to usual care, the probability of the intervention group to be cost-effective was less than 5%. Conclusion: compared to usual care at 1-year follow-up, strategies for identification of frail older people in primary care combined with a proactive integrated care intervention are probably not (cost-) effective

Contraceptive counselling for women with multiple unintended pregnancies: the abortion client’s perspective

Objectives: Some women have multiple unintended pregnancies. Appropriate interventions could prevent some of the abortions that follow. This article presents the opinions of some abortion clients about their contraception and the counselling they received. It also formulates suggestions for counselling strategies of health care providers (HCPs) and other interventions that can support effective contraceptive behaviour. Methods: A mixed method approach was used. A quantitative survey was carried out in one clinic in the Netherlands (N = 201), assessing topics related to contraceptive use and counselling. Semi-structured interviews (n = 11) were conducted with women who had had at least three unintended pregnancies. Interview topics included the type of contraceptive counselling, experience with contraceptive counselling and preferences regarding access to contraceptive information. Results: Women who had had multiple abortions were more likely to express a need for contraceptive counselling and more often discussed contraception with their HCP compared with women who had had one abortion. Several themes emerged from the semi-structured interviews that had partially contributed to further unplanned pregnancies: experience with counselling, acceptability of the contraceptive method, sources of information and cultural influences. Many women with multiple unintended pregnancies could not find suitable advice and stated preferences for future decision making. Conclusion: This study offers insight into the motives for contraceptive use of women with multiple unintended pregnancies. Contraceptive efficacy could be improved by implementing counselling that is adapted to individual needs. The respondents stated that they would appreciate other sources of information, such as support through other forms of communication. The formation of a working group would be helpful in developing these services

Sind alle LGBTQI+-patienten weiß und männlich? Bewährte praktiken und lücken im curriculum für gesundheitsthemen von sexuellen und gender-minderheiten in einem niederländischen medizincurriculum

Objectives: People marginalized based on their sexual and gender identity face specific health risks and experience barriers to culturally competent care. Insight into how Dutch medical schools address LGB-TQI+ health-related learning objectives is scarce. We therefore examined how LGBTQI+ health issues are integrated in the Amsterdam UMC-VUmc medical curriculum by evaluating the year-two course ‘Sex, Sexuality and Relationships’ for LGBTQI+ content. Methods/Design: We examined written course content (course syllabus, lecture notes, and course literature) of the 2016-2017 course. We used a framework for essential LGBTQI+ content in medical education and an intersectional approach to examine which LGBTQI+ themes and subthemes were addressed. Results: Several essential LGBTQI+ health issues were adequately addressed and integrated into the Amsterdam UMC-VUmc curriculum, but we also identified curriculum gaps. The needs of patients with lesbian, bisexual, or gender non-conforming identities were marginally addressed, and issues related to intersections of minoritized sexual and gender identities with other aspects of diversity such as ethnicity, age and class remained unexplored. The course discussed gender and sexuality as fixed and mainly binary constructs, and only addressed biomedical explanatory models of sex, gender and sexuality. Discussion and conclusion: The absence of complex patient identities in relation to sex, gender and sexuality does not adequately prepare students to provide LGBTQI+ responsive care. If not designed and taught competently, LGBTQI+-related curriculum content may reproduce bias and stereotypes, and contribute to a medical climate where both LGB-TQI+ patients, students, and doctors conceal their identities. Further implementation of LGBTQI+ health issues is required in (continuing) medical education to secure culturally competent clinical environments. Educational research is needed to understand how medical education contributes to marginalization of LGBTQI+ identities and thus, to health disparities

"Call us by our name": Quality of care and wellbeing from the perspective of girls in residential care facilities who are commercially and sexually exploited by "loverboys"

In the Netherlands, thirteen organizations offer specialized care services for commercially and sexually exploited (CSE) girls who are underage. Quality and effectiveness of these services have only sparsely been evaluated, while existing quantitative measures of treatment success mainly include the perspective of professionals. As a result, minimal insight exists as to whether current practices are sufficiently tailored to the needs of CSE girls. We carried out an ethnographic Participatory Health Research project with the objective to gain insight in CSE girls’ care experiences needs, and understand what they think contributes to good care. We worked with 27 girls from three residential youth facilities using a range of creative methods. Girls discussed their need for privacy and self-determination in a highly surveilled environment that aims to shield them from exploitative relationships with boys and men. Protective rules and measures impact their ability to build trusting, reciprocal relationships with group leaders, as well as their opportunities to make mistakes and learn without consequences. Girls wanted care that centered on their individual needs, and did not see their victimization as defining those needs. They called for group leaders to be responsive to their sometimes conflicting values by providing both a protective and autonomous space for care delivery. Navigating this complexity is a balancing act for professionals caring for CSE girls. The perspectives reported in this paper will be integrated in the measurement protocol of a broader N = 1 effectiveness study

Sex- and gender-sensitive public health research: an analysis of research proposals in a research institute in the Netherlands

Taking sex and gender into account in public health research is essential to optimize methodological procedures, bridge the gender gap in public health knowledge, and advance gender equality. The aim of this study was to evaluate the current status of sex and gender considerations in public health research proposals in a Dutch research institute. We screened a random sample of 38 proposals submitted for review to the institute’s science committee between 2011 and 2016. Using the Canadian Institutes of Health Research’ Gender and Health Institute criteria for gender-sensitive research and qualitative content analysis, we assessed if, and how sex and gender were considered throughout the proposals (background, research aim, design, data collection, and analysis). Our results show that in general, both sex and gender were poorly considered. Gender was insufficiently taken into account throughout most proposals. When sex was mentioned in a proposal, its consideration was often inconsistent and fragmented. Finally, we identified common methodological pitfalls. We recommend that public health curricula and funding bodies increase their focus on implementing sex and gender in public health research, for instance through quality criteria, training programs for researchers and reviewers, and capacity building initiatives