Publications by authors named "Barbara J Regeer"

Background: Diagnosing bipolar disorder (BD) is challenging, and adequate treatment is of major importance to minimalize the consequences of the illness. Early recognition is one way to address this. Although in clinical research the prodromal phase of BD is gaining interest, the perspective of patients with BD and their caregivers on prodromal symptoms is still lacking.

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Objectives: Despite increasing emphasis on the inclusion of patient input in health technology assessment (HTA) in Europe in particular, questions remain as to the integration of patient insight alongside other HTA inputs. This paper aims to explore how HTA processes, while ensuring the scientific quality of assessments, "make do" with patient knowledge elicited through patients' involvement mechanisms.

Methods: The qualitative study analyzed institutional HTA and patient involvement in four European country contexts.

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Background: Adequate detection of symptoms and disease progression in behavioural variant frontotemporal dementia (bvFTD) is complex. Dementia cohorts usually utilize cognitive and functional measures, which fail to detect dominant behavioural and social cognitive deficits in bvFTD. Moreover, since patients typically have a loss of insight, caregivers are important informants.

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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).

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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.

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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.

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Background: Shared decision-making (SDM) is considered the "final stage" that completes the implementation of evidence-based medicine. Yet, it is also considered the most neglected stage. SDM shifts the epistemological authority of medical knowledge to one that deliberately includes patients' values and preferences.

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Background: Mental disorders affect employment and the ability to work, and mental healthcare providers are important in the promotion of health and employment for affected individuals. The objective of this study is to explore the perspectives of mental healthcare providers on pathways to improved employment for persons with mental disorders in two lower middle-income countries.

Methods: Our study participants included mental healthcare providers (psychiatrists, occupational physicians, psychologists, and social care workers) from Kenya and Nigeria.

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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. 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).

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Despite an elaborated framework on reasonable accommodations in the UN Convention on the Rights of Persons with Disabilities (UN CRPD), persons with mental disabilities continue to face significant limitations to employment in East Africa. The aim of our study is to explore legal provisions related to reasonable accommodations in the employment-related laws regarding persons with mental disabilities in East Africa, and to suggest ways to bridge the gap between principles of international law and provisions of domestic laws. The disability, labour and human rights laws of 18 East African countries were accessed from the database of WHO MiNDbank and the International Labour Organisation.

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Persons with mental illness experience social life restriction and stigma that may have implications for their work ability. The aims of this study are (i) to report experienced and anticipated discrimination and social functioning in persons with mental disabilities in Kenya and (ii) to investigate the association between experienced and anticipated discrimination, social functioning, and employment in this population. Cross-sectional study design where we randomly recruited 72 persons with mental illness through two networks of persons with psychosocial disabilities in Kenya.

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Collaborative approaches in health, such as One Health (OH), are promising; nevertheless, several authors point at persistent challenges for designing and implementing OH initiatives. Among other challenges, OH practitioners struggle in their efforts to collaborate across disciplines and domains. This paper aims to provide insights into the existing challenges for designing and implementing OH initiatives, their causes and solutions, and points out strategic solutions with the potential to solve practical challenges.

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The consequences of leprosy go beyond the physical, social and psychological, as leprosy can drive persons affected and their families into poverty, stigmatization and disability. This paper describes the impact of a socio-economic development (SED) intervention that uses a twin-track approach (two micro-credit models) to reduce leprosy-related stigma in Cirebon District, Indonesia. A randomized-controlled mixed-methods study design was used to test the effectiveness of the SED intervention.

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In Kenya, the employment rate for persons with disabilities is about 1% compared to 73.8% for the general population, and the situation is even worse for persons with mental disabilities. Persons with mental disabilities are often regarded as "mad", and stand little or no chance of employment.

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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.

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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. 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.

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Background: In mental health care, clinical practice is often based on the best available research evidence. However, research findings are difficult to apply to clinical practice, resulting in an implementation gap. To bridge the gap between research and clinical practice, patients' perspectives should be used in health care and research.

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Background: Diagnosis and treatment of bipolar disorder is complex. Health care is supported by clinical guidelines, which are highly based on scientific evidence. However, such care does not necessarily correspond to preferred care according to patients.

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Article Synopsis
  • Rapid developments in Indian society have led to increased stress for both parents and children in middle-class families, due to inter-generational conflicts and academic pressures.
  • A pilot parenting program in Pune focused on fostering autonomy, promoting stress-free learning, and improving communication through group sessions facilitated by a psychologist.
  • The program's effectiveness was evaluated through interviews and observations, showing positive outcomes like enhanced creativity in parenting and improved mindfulness in communication between parents and children.
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Purpose Work participation after breast cancer treatment is generally negatively affected. Occupational health professionals might improve work-related outcomes by bridging the gap between sick-listed employees' levels of functioning and work demands. To aid them in this task, this review explored the association between functional impairments and work-related outcomes in breast cancer survivors.

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Background: Over the past six decades, the concept of patient-centred care (PCC) has been discussed in health research, policy and practice. However, research on PCC from a patients' perspective is sparse and particularly absent in outpatient psychiatric services.

Aim: to gain insight into what patients with bipolar disorder and ADHD consider "good care" and what this implies for the conceptualisation of PCC.

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Background: Bipolar disorder has been associated with a decrease in cognitive functioning affecting the functional outcome of patients independent of mood states. However, there have only been few attempts to investigate the effects of functional remediation for patients with bipolar disorder. The current study investigates the feasibility and effectiveness of a combined group and individual functional remediation program for bipolar disorder, including both patients and their caregivers.

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