While hybrid evaluation practices are increasingly common, many Western countries continue to favor modernist evaluation logics focused on performance management—hampering the normalization of reflexive logics revolving around system change. We use Normalization Process Theory to analyze the work evaluators from a policy assessment agency undertook to accomplish the alignment between the prevailing and proposed logics guiding evaluation practice, while implementing a reflexive evaluation approach. Ad hoc alignment strategies and insufficient investment in mutual sense-making regarding reflexive evaluation hindered normalization. We conclude that alignment requires developing reflexive evaluation legitimacy in the context of application and guarding reflexive evaluation integrity, while contextual structures and cultures and reflexive evaluation components are being negotiated. Elasticity (of contextual structures and cultures) and plasticity (of reflexive evaluation components) are introduced as helpful concepts to further understand how reflexive evaluation practices can become normalized. We reflect on the use of Normalization Process Theory for studying the normalization of reflexive evaluation.
Exposure to violence, vulnerability due to lack of shelter, alienation due to stigma, the experiences of severe mental illness (SMI) and subsequent institutionalization, make homeless persons with SMI uniquely susceptible to trauma exposure and subsequent mental health consequences. This study aims to contribute to the development of culturally sensitive interventions for identifying and treating trauma in a population of homeless persons with SMI in Tamil Nadu, India by understanding the manifestations of trauma and its associated consequences in this population. Free-listing exercises followed by in-depth interviews were conducted with a convenience sample of 26 user-survivors who have experienced homelessness or were at risk of homelessness, and suffered from SMI. Topics explored included events considered to be traumatic, pathways to trauma, associated emotional, physical and social complaints, and coping strategies. Results indicate discrepancies in classification of traumatic events between user-survivors and the Diagnostic and Statistical Manual of Mental Disorders. Traumatic experiences, particularly relating to social relationships and poverty, mentioned by user-survivors did not match traditional conceptualizations of trauma. Positive coping strategies for trauma included being mentally strong, knowledge and awareness, whereas the main negative coping strategy is avoidance. User-survivors attributed their experiences of homelessness and SMI to past traumas. Differing views of trauma between user-survivors and mental health professionals can lead to misdiagnosis and under-recognition of trauma in this population of homeless persons with SMI.
In: Ingemann , C , Regeer , B J & Larsen , C V L 2018 , ' Determinants of an integrated public health approach : The implementation process of Greenland's second public health program 11 Medical and Health Sciences 1117 Public Health and Health Services ' , BMC Public Health , vol. 18 , 1353 , pp. 1-13 . https://doi.org/10.1186/s12889-018-6253-4
Background: Greenland struggles with a high prevalence of smoking, alcohol and drug abuse. In response to the increasing need for preventive initiatives, the first public health program Inuuneritta was introduced in 2007. Internationally, frameworks focus primarily on the implementation of a single, well-described intervention or program. However, with the increasing need and emergence of more holistic, integrated approaches, a need for research investigating the process of policy implementation from launch to action arises. This paper aims to augment the empirical evidence on the implementation of integrated health promotion programs within a governmental setting using the case of Inuuneritta II. In this study, the constraining and enabling determinants of the implementation processes within and across levels and sectors were examined. Methods: Qualitative methods with a transdisciplinary approach were applied. Data collection consisted of six phases with different qualitative methods applied to gain a comprehensive overview and understanding of Inuuneritta II's implementation process. These methods included: observations and focus group discussions at the community health worker (CHW) conference, telephone interviews, document analysis, and a workshop on results dissemination. Results: Enabling determinants influencing the implementation process of Inuuneritta II positively were high motivation among adopters, local prevention committees supporting community health workers, and the initiation of the central prevention committee. In contrast, constraining determinants were ambiguous program aims, high turnovers, siloed budgets and work environments, and an inconsistent and neglected central prevention committee. Conclusion: Inuuneritta II provided a substantial framework for an integrated health policy approach. However, having a holistic and comprehensive program enabling an integrated approach is not sufficient. Inuuneritta II's integrated approach does not harmonise with the government's inflexible organisational structure resulting in insufficient implementation.
In: Ingemann , C , Regeer , B J & Larsen , C V L 2018 , ' Determinants of an integrated public health approach : the implementation process of Greenland's second public health program ' , BMC Public Health , vol. 18 , 1353 . https://doi.org/10.1186/s12889-018-6253-4
Background: Greenland struggles with a high prevalence of smoking, alcohol and drug abuse. In response to the increasing need for preventive initiatives, the first public health program Inuuneritta was introduced in 2007. Internationally, frameworks focus primarily on the implementation of a single, well-described intervention or program. However, with the increasing need and emergence of more holistic, integrated approaches, a need for research investigating the process of policy implementation from launch to action arises. This paper aims to augment the empirical evidence on the implementation of integrated health promotion programs within a governmental setting using the case of Inuuneritta II. In this study, the constraining and enabling determinants of the implementation processes within and across levels and sectors were examined. Methods: Qualitative methods with a transdisciplinary approach were applied. Data collection consisted of six phases with different qualitative methods applied to gain a comprehensive overview and understanding of Inuuneritta II's implementation process. These methods included: observations and focus group discussions at the community health worker (CHW) conference, telephone interviews, document analysis, and a workshop on results dissemination. Results: Enabling determinants influencing the implementation process of Inuuneritta II positively were high motivation among adopters, local prevention committees supporting community health workers, and the initiation of the central prevention committee. In contrast, constraining determinants were ambiguous program aims, high turnovers, siloed budgets and work environments, and an inconsistent and neglected central prevention committee. Conclusion: Inuuneritta II provided a substantial framework for an integrated health policy approach. However, having a holistic and comprehensive program enabling an integrated approach is not sufficient. Inuuneritta II's integrated approach does not harmonise with the government's inflexible organisational structure resulting in insufficient implementation.
In: Ewen , M , Zweekhorst , M , Regeer , B & Laing , R 2017 , ' Baseline assessment of WHO's target for both availability and affordability of essential medicines to treat non-communicable diseases ' , PLoS ONE , vol. 12 , no. 2 , e0171284 . https://doi.org/10.1371/journal.pone.0171284
Background WHO has set a voluntary target of 80% availability of affordable essential medicines, including generics, to treat major non-communicable diseases (NCDs), in the public and private sectors of countries by 2025. We undertook a secondary analysis of data from 30 surveys in low- and middle-income countries, conducted from 2008-2015 using the World Health Organization (WHO)/Health Action International (HAI) medicine availability and price survey methodology, to establish a baseline for this target. Methods Data for 49 medicines (lowest priced generics and originator brands) to treat cardiovascular diseases (CVD), diabetes, chronic obstructive pulmonary diseases (COPD) and central nervous system (CNS) conditions were analysed to determine their availability in healthcare facilities and pharmacies, their affordability for those on low incomes (based on median patient prices of each medicine), and the percentage of medicines that were both available and affordable. Affordability was expressed as the number of days' wages of the lowestpaid unskilled government worker needed to purchase 30 days' supply using standard treatment regimens. Paying more than 1 days' wages was considered unaffordable. Findings In low-income countries, 15.2% and 18.9% of lowest-priced generics met WHO's target in the public and private sectors, respectively, and 2.6% and 5.2% of originator brands. In lower-middle income countries, 23.8% and 23.2% of lowest priced generics, and 0.8% and 1.4% of originator brands, met the target in the public and private sectors, respectively. In upper-middle income countries, the situation was better for generics but still suboptimal as 36.0% and 39.4% met the target in public and private sectors, respectively. For originator brands in upper-middle income countries, none reached the target in the public sector and 13.7% in the private sector. Across the therapeutic groups for lowest priced generics, CVD medicines in low-income countries (11.9%), and CNS medicines in lower-middle (10.2%) and upper-middle income countries (33.3%), were least available and affordable in the public sector. In the private sector for lowest priced generics, CNS medicines were least available and affordable in all three country income groups (11.4%, 5.8% and 29.3% in low-, lower-middle and upper-middle income countries respectively). Interpretation This data, which can act as a baseline for the WHO target, shows low availability and/or poor affordability is resulting in few essential NCD medicines meeting the target in low- and middle-income countries. In the era of Sustainable Development Goals, and as countries work to achieve Universal Health Coverage, increased commitments are needed by governments to improve the situation through the development of evidence-informed, nationallycontextualised interventions, with regular monitoring of NCD medicine availability, patient prices and affordability.
AbstractDespite increased popularity of knowledge co-production as a research approach to address contemporary environmental issues, its implementation in science–policy contexts is not self-evident. In this paper, we illustrate how researchers at the PBL Netherlands Environmental Assessment Agency (in Dutch: Planbureau voor de Leefomgeving (PBL)) ensured a fit between key features of knowledge co-production and conventional norms and customs for knowledge production processes at the science–policy interface while simultaneously challenging those norms to create space for knowledge co-production. Drawing on implementation science, we analyzed two types of alignment activities: negotiation of normative and relational norms and modification of co-production features. Based on three policy evaluation cases, we show that PBL researchers developed co-production capacity over time. They became more skilled at recognizing (un)conducive structures to knowledge co-production, negotiating such structures, and modifying co-production features without compromising co-production integrity. We argue that investment in these skills is required to negotiate space for knowledge co-production in science–policy settings.
This study aimed to address gaps in understanding of the lived experiences of caregivers of persons with mental illness in low-income countries. It was conducted among caregivers of persons with mental illness making use of a free non-governmental clinic in and around Chennai, India. The study adopted a qualitative methodology, with semi-structured interviews and life history exercises (n = 29) and six focus group discussions with caregivers (n = 21) and mental health professionals and community-based workers (n = 39). The experiences of caregivers were analyzed in the framework of "The Banyan model of caregiving," which identifies six phases. Major themes in caregivers' experience were: embarrassment and losing honor; fear; awareness; stigma and social exclusion; and reduced social interaction and loneliness. Posttraumatic growth considered as the result of caregiver experiences was found to consist mainly of personal growth and focusing on positive life experiences. Lost opportunities particular to the context of Tamil Nadu were described as the inability to get married, obtaining less education than desired, and loss of employment. Siblings faced lower levels of burden, while elderly mothers experienced especially high levels of burden and lack of happiness in life. Caregiver gains were identified as greater compassion for other people with disabilities, resulting in a desire to help others, as well as increased personal strength and confidence. Understanding the nuances of the caregiving experiences over time can provide a framework to devise more fine-tuned support structures that aim to prevent reductions in social interaction and lost opportunities, and improve a sense of meaning, in order to assist caregivers to continue providing care for their relatives with mental illness in a context with scarce mental health resources.
In: Kok , K P W , Gjefsen , M D , Regeer , B J & Broerse , J E W 2021 , ' Unraveling the politics of 'doing inclusion' in transdisciplinarity for sustainable transformation ' , Sustainability Science , vol. 16 , no. 6 , pp. 1811-1826 . https://doi.org/10.1007/s11625-021-01033-7
Transdisciplinary research and innovation (R&I) efforts have emerged as a means to address challenges to sustainable transformation. One of the main elements of transdisciplinary efforts is the 'inclusion' of different stakeholders, values and perspectives in participatory R&I processes. In practice, however, 'doing inclusion' raises a number of challenges. In this article, we aim to contribute to re-politicizing inclusion in transdisciplinarity for transformation, by (1) empirically unraveling four key challenges that emerge in the political practice of 'doing inclusion', (2) illustrating how facilitators of inclusion processes perform balancing acts when confronted with these challenges, and (3) reflecting on what the unfolding dynamics suggests about the politics of stakeholder inclusion for societal transformation. In doing so, we analyze the transdisciplinary FIT4FOOD2030 project (2017–2020)—an EU-funded project that aimed to contribute to fostering EU R&I systems' ability to catalyze food system transformation through stakeholder engagement in 25 Living Labs. Based on 3 years of action-research (including interviews, workshops and field observations), we identified four inherent political challenges to 'doing inclusion' in FIT4FOOD2030: (1) the challenge to meaningfully bring together powerful and marginalized stakeholders; (2) combining representation and deliberation of different stakeholder groups; (3) balancing diversities of inclusion with directionalities implied by transformative efforts; and (4) navigating the complexities of establishing boundaries of inclusion processes. We argue that by understanding 'doing inclusion' as a political practice, necessitating specificity about the (normative) ambitions in different inclusion settings, facilitators may better grasp and address challenges in transdisciplinarity for transformation.
Much attention in health technology assessment (HTA), a health system governance mechanism used for determining the value of health technologies, is being paid to improving the quality and patient-relevance of the evidence used in assessment pratices. Whilst the direct involvement of patient actors throughout HTA processes has become a more routine element of institutional practice, the 'impacts' of patient engagement (PE) initiatives have proven difficult to determine and enhance. In reflexive governance theories, reflexive learning is a critical mechanism of multi-stakeholder arrangements that better handles the complexities of technologies and how they are understood through governance practices. This paper explores how reflexive learning can be used to build a richer conceptualisation of PE in HTA, in order to generate suggestions for enhancing PE practices and their impact. We critically apply reflexive learning insights on qualitative data derived from the co-creation process of a PE evaluation framework, organised through an EU project focused on strengthening PE practices across medicines development (2018–2020), including 24 interactive case studies, 3 multi-stakeholder workshops, and our observations throughout the project. The findings characterise two dimensions of reflexive learning in PE: First, reflexive learning refers to the adaptive reorganisation of evidence generating practices, including the revision of medicines' evaluation criteria and the conditions under which evidence 'relevant' to HTA is constructed. Second, reflexive learning spotlights the sociopolitics which shape technology evaluation. Four themes affecting meaningful and sustained PE in medicines development were analysed: institutional boundaries due to established evaluation criteria; timing of engagements; network relations between institutional actors; and the politics of patient representation. Extending beyond discrete PE activities and their reported impacts, reflexive forms of learning are crucial to yielding more 'meaningful' PE for HTA and medicines development, facilitating a HTA practice that more meaningfully deals with the complexities of medicines evidence generation.
Transdisciplinary research and innovation (R&I) eforts have emerged as a means to address challenges to sustainable transformation. One of the main elements of transdisciplinary eforts is the 'inclusion' of diferent stakeholders, values and perspectives in participatory R&I processes. In practice, however, 'doing inclusion' raises a number of challenges. In this article, we aim to contribute to re-politicizing inclusion in transdisciplinarity for transformation, by (1) empirically unraveling four key challenges that emerge in the political practice of 'doing inclusion', (2) illustrating how facilitators of inclusion processes perform balancing acts when confronted with these challenges, and (3) refecting on what the unfolding dynamics suggests about the politics of stakeholder inclusion for societal transformation. In doing so, we analyze the transdisciplinary FIT4FOOD2030 project (2017–2020)—an EU-funded project that aimed to contribute to fostering EU R&I systems' ability to catalyze food system transformation through stakeholder engagement in 25 Living Labs. Based on 3 years of action-research (including interviews, workshops and feld observations), we identifed four inherent political challenges to 'doing inclusion' in FIT4FOOD2030: (1) the challenge to meaningfully bring together powerful and marginalized stakeholders; (2) combining representation and deliberation of diferent stakeholder groups; (3) balancing diversities of inclusion with directionalities implied by transformative eforts; and (4) navigating the complexities of establishing boundaries of inclusion processes. We argue that by understanding 'doing inclusion' as a political practice, necessitating specificity about the (normative) ambitions in diferent inclusion settings, facilitators may better grasp and address challenges in transdisciplinarity for transformation. ; This work was supported by the European project FIT4FOOD 2030, which received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 774088. ; publishedVersion
In: Ebuenyi , I D , Rottenburg , E S , Bunders-Aelen , J F G & Regeer , B J 2020 , ' Challenges of inclusion : a qualitative study exploring barriers and pathways to inclusion of persons with mental disabilities in technical and vocational education and training programmes in East Africa ' , Disability and Rehabilitation , vol. 42 , no. 4 , pp. 536-544 . https://doi.org/10.1080/09638288.2018.1503729
Purpose: To explore barriers and pathways to the inclusion of persons with mental and intellectual disabilities in technical and vocational education and training programmes in four East African countries, in order to pave the way to greater inclusion. Materials and methods: An explorative, qualitative study including 10 in-depth interviews and a group discussion was conducted with coordinators of different programmes in four East African countries. Two independent researchers coded the interviews inductively using Atlas.ti. The underlying framework used is the culture, structure, and practice model. Results: Barriers and pathways to inclusion were found in the three interrelated components of the model. They are mutually reinforcing and are thus not independent of one another. Barriers regarding culture include negative attitudes towards persons with mental illnesses, structural barriers relate to exclusion from primary school, rigid curricula and untrained teachers and unclear policies. Culture and structure hence severely hinder a practice of including persons with mental disabilities in technical and vocational education and training programmes. Pathways suggested are aiming for a clearer policy, more flexible curricula, improved teacher training and more inclusive attitudes. Conclusions: In order to overcome the identified complex barriers, systemic changes are necessary. Suggested pathways for programme coordinators serve as a starting point.Implications for rehabilitation Clear and up-to-date information on mental disability is required to engender societal participation; especially that of stakeholders in technical and vocational education and training programmes. Affirmative action and policy implementations of national and international human rights legislations are required to address the challenges of enrolment in technical and vocational education and training programmes. Disability organisations and government should adopt a more open and strengths-based attitude, tailor-made curricula, specific teacher training as well as clearer policies to ensure better inclusion of persons with mental disabilities in technical and vocational education and training programmes.
Introduction: Globally, mental illness affects social and occupational functioning. We aimed to highlight the barriers to employment experienced by persons with mental disabilities in Kenya and how they manage to find work against all the odds. Materials and Methods: Using a mixed-method study design, we purposely sampled persons with mental illness through networks of persons with psychosocial disabilities (Users and Survivors of Psychiatry and Africa Mental Health Foundation, Kenya). Qualitative data were obtained through in-depth interviews (n = 14) and four focus group discussions (n = 30), while a researcher-designed questionnaire was used to obtain quantitative data (n = 72). Results: We identified five major clusters of barriers to employment: mental illness factors, social exclusion and stigma, work identity crisis, non-accommodative environment, and socioeconomic status. Factors that facilitated employment include self-awareness and acceptance, self-employment, provision of reasonable accommodation, improved health services, addressing discriminatory laws and practices, and social development programs and support. Participants considered psychiatric illness the highest barrier to employment (63.2%), while supportive family/friends were considered the highest facilitator of employment (54.5%). Conclusion: The employment experiences of persons with mental disabilities are influenced by various interrelated factors in their social environment. Proactive social support and affirmative action by government may improve their employment opportunities and quality of life.