Exploring peer education for migrant informal caregivers of mentally ill loved ones:a realist evaluation protocol

Introduction:Informal caregivers with a migration background who care for someone with a mental illness often experience elevated caregiver burdens due to factors such as discrimination, language barriers, and stigma. In The Netherlands, a peer education intervention called ‘They Are not Mental?!’ (TANM) addresses these challenges by reducing stigma, increasing help-seeking behaviors, and improving access to healthcare. This transdisciplinary study evaluates how contextual factors and mechanisms influence its outcomes. Description: This research protocol outlines a realist evaluation of the intervention using a mixed-methods design, including interviews, post-questionnaires, and observations. The study will develop and refine the program theory to determine for whom, in what contexts, why, and how the intervention works. Discussion: This protocol shows how we plan to investigate how, why, for whom and under what circumstances TANM produces its intended outcomes, using a realist evaluation approach. This approach is well-suited for evaluating complex interventions because it accommodates for dynamic and iterative interventions. Its focus is on understanding patterns and mechanisms within specific contexts, using program theories. Conclusion: The evaluation of TANM will inform future intervention adaptations and guide future efforts to support vulnerable populations, particularly migrants navigating caregiving challenges.</p

Attribute Development and Level Selection for a Discrete Choice Experiment to Elicit Care Preferences of Older Adults and Informal Caregivers Aging in Place in The Netherlands

Background: The Netherlands reformed its long-term care policy to encourage older adults to age in place with the support of informal caregivers. It remains unclear whether the available care and support options align with the needs and preferences of older adults and caregivers. Discrete choice experiments (DCE) are increasingly used to identify individual preferences. This study describes the development of attributes (e.g., emotional support) and attribute levels (e.g., psychologist and case manager) for a DCE on aging-in-place preferences among older adults and informal caregivers in The Netherlands. Methods: Semi-structured interviews were conducted with older adults and informal caregivers to identify key components for successful aging in place. Interviews were transcribed, and reflexive thematic analysis identified patterns that led to a list of attributes. Visuals of these attributes were created and presented to a new sample of informal caregivers and older adults in focus groups to rank attributes and define attribute levels. Results: Attributes identified through the interviews (N = 28) included housing, personal care, household tasks, transportation, social activities, digital skills, and help navigating the healthcare system. Focus groups (N = 35) found that older adults prioritized housing, while informal caregivers prioritized navigating the healthcare system. Transportation and digital skills were ranked as the least important and were excluded from the final list of attributes. Conclusions: Our findings provide a detailed understanding of aging-in-place preferences of older adults and informal caregivers. These insights will inform a DCE to quantify preferences and provide evidence for policymakers. This study increases transparency about the process of attribute development and level selection, contributing to the quality of the final DCE study.</p

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands:a protocol for a discrete choice experiment

Introduction:Ageing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and informal caregivers. By providing insight into people's preferences, discrete choice experiments (DCEs) can help develop consensus between stakeholders. This protocol paper outlines the development of a Dutch national study to cocreate a healthcare package design methodology built on DCEs that is person-centred and helps support informal caregivers and persons with dementia to AIP. A subpopulation analysis of persons with dementia with a migration background is planned due to their high risk for dementia and under-representation in research and care. Methods and analysis:The DCE is designed to understand how persons with dementia and informal caregivers choose between different healthcare packages. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs and preferences of persons with dementia and informal caregivers. The DCE will identify individual and joint preferences to AIP. The relative importance of each attribute will be calculated. The DCE data will be analysed with the use of a random parameters logit model. Ethics and dissemination:Ethics approval was waived by the Amsterdam University Medical Center (W23_112 #23.137). A study summary will be available on the websites of Alzheimer Nederland, Pharos and Amsterdam Public Health institute. Results are expected to be presented at (inter)national conferences, peer-reviewed papers will be submitted, and a dissemination meeting will be held to bring stakeholders together. The study results will help improve healthcare package design for all stakeholders.</p

Ageing-in-place care preferences of persons living with dementia and informal care-givers with a migration background:a qualitative interview study

Ageing-in-place for persons with dementia and informal care-givers is encouraged by governments and society. However, individuals with non-Western migration backgrounds are at higher risk of dementia yet underrepresented in research and care. This study aims to identify ageing-in-place care preferences of persons with dementia and their informal care-givers in the Netherlands. Semi-structured interviews (n = 8 participants with dementia, n = 20 informal care-givers) were analyzed using reflexive thematic analysis. Findings reveal that informal care-givers feel a strong duty to care, assisting with various daily tasks. While they desire shared care with professionals, identifying concrete care needs is challenging, highlighting the need for proactive professional support. Participants also emphasized the importance of culturally sensitive in-home care, home adaptations, social care and accessible dementia information. Additionally, the emotional impact of dementia on care recipients and care-givers underscores the need for emotional support. These insights enhance understanding of the care preferences of persons with dementia and their informal care-givers, aiding more efficient and culturally responsive health service planning.</p

A Systematic Review of Neuropsychological Tests for the Assessment of Dementia in Non-Western, Low-Educated or Illiterate Populations

Objective:Neuropsychological tests are important instruments to determine a cognitive profile, giving insight into the etiology of dementia; however, these tests cannot readily be used in culturally diverse, low-educated populations, due to their dependence upon (Western) culture, education, and literacy. In this review we aim to give an overview of studies investigating domain-specific cognitive tests used to assess dementia in non-Western, low-educated populations. The second aim was to examine the quality of these studies and of the adaptations for culturally, linguistically, and educationally diverse populations.Method:A systematic review was performed using six databases, without restrictions on the year or language of publication.Results:Forty-four studies were included, stemming mainly from Brazil, Hong Kong, Korea, and considering Hispanics/Latinos residing in the USA. Most studies focused on Alzheimer's disease (n = 17) or unspecified dementia (n = 16). Memory (n = 18) was studied most often, using 14 different tests. The traditional Western tests in the domains of attention (n = 8) and construction (n = 15), were unsuitable for low-educated patients. There was little variety in instruments measuring executive functioning (two tests, n = 13), and language (n = 12, of which 10 were naming tests). Many studies did not report a thorough adaptation procedure (n = 39) or blinding procedures (n = 29).Conclusions:Various formats of memory tests seem suitable for low-educated, non-Western populations. Promising tasks in other cognitive domains are the Stick Design Test, Five Digit Test, and verbal fluency test. Further research is needed regarding cross-cultural instruments measuring executive functioning and language in low-educated people

Insufficient cross-cultural adaptations and psychometric properties for many translated health assessment scales: a systematic review

If researchers want to assess reliably different aspects of general health in the migrant populations, they need translations of internationally used health assessment scales with appropriate cross-cultural adaptations and satisfactory psychometric properties. A systematic review was performed to assess the quality of the cross-cultural adaptations and the psychometric properties of health assessment scales measuring cognition, mood, activities of daily living, health-related quality of life, and loneliness. We focused on the scales that were adapted for use with Turkish, Arab, and Surinamese (Creole and Hindi) individuals aged 65 years and older. PubMed, PsycINFO, and EMBASE databases were systematically searched, and selected articles were cross-checked for other relevant publications. In total, 68 relevant studies of the Turkish, Arab, and Surinamese populations were identified. To arrive at an appropriate cross-culturally adapted scale, five steps are required. Six studies followed this complete process. Only a few studies assessed all the psychometric properties of the cross-culturally adapted scales. The studies in which these were best assessed primarily involved cognitive and functional scales. Cross-cultural adaptations are insufficient, and psychometric properties are unknown for many translated health assessment scale

Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature

The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals’ attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group. </jats:p

Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature

The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals’ attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group