Background & objectives: Cognitive and other neurodegenerative conditions related to ageing have become public health priorities in low- and middle-income countries. However, contextually based, applied research to support the development of awareness, diagnosis and care pathways for people with dementia in South Asia is still largely undeveloped. This study was aimed to use applied research studies for dementia in South Asia as exemplars of how individual-level capacity and capability building for dementia research can be achieved. Methods: Using Theory of Change as a framework, we embedded capacity and capability building into the studies through six domains: people (human resources), research integrity and governance, study delivery skills, international collaborative working, patient and public involvement (PPI) (awareness raising, stigma and health literacy) and development of ‘pathways’. For each aspect, development goals were defined and how they would be achieved. Results: New principal investigators, research assistants (including outcome raters), study coordinators and intervention practitioners were trained across eight study sites in India, Pakistan, and Bangladesh, for dementia research. Training was delivered at study start, and through booster sessions, using workshops, face-to-face sessions, online training and video-link sessions. International collaborations were fostered, leading to a proposal for international funding. Each study site co-created PPI events to raise awareness and to inform the research. The recruitment pathways and study logistics fostered the development dementia diagnosis and care pathways. Interpretation & conclusions: Embedding capacity and capability building in applied dementia research in South Asia fosters the sustainability of dementia research, which is essential in developing diagnostic and care pathways.
Despite high burden of dementia in low‐and middle‐income countries (LMICs), only a small number of clinical trials of psychosocial interventions for persons with dementia (PwD) have been conducted in these settings. It is essential that such trials use appropriate outcome measures that are methodologically robust and culturally appropriate to evaluate the effectiveness of interventions. We carried out a systematic review to examine the evidence base and psychometric properties of measures employed in these studies in LMICs. A systematic search of published literature on randomised controlled trials (RCT) of psychosocial interventions for PwD in LMICs between 2008 and April 2020 was carried out. Measures employed in each of the eligible studies were identified and through a focused search, we further explored the evidence base and psychometric properties employing Terwee criteria. Data extraction and quality appraisal were conducted by two independent reviewers. The review identified 41 measures from 17 RCTS which fulfilled eligibility criteria and they examined effectiveness across the domains of cognition (n = 16), behaviour and psychological symptoms (n = 11) and quality of life (n = 8). Of these 41, we were able to access relevant literature only for 18 and they were subject to psychometric analysis. Psychometric properties of these 18 instruments were at best modest, with Terwee scores ranging from 3 (low) to 15 (moderate). A majority of the studies were from China (n = 5) and Brazil (n = 6). The evidence base for the routinely employed measures in RCTs of non‐pharmacological interventions for PwD in LMICs is limited. The quality of adaptation and validation of these instruments is variable and studies are largely uninformative about their psychometric properties and cultural appropriateness to the study setting. There is an urgent need to develop scientifically robust instruments in LMIC settings that can be confidently employed to measure outcomes in trials of psychosocial interventions for PwD.
IntroductionIt is proven that adverse intrauterine environment results in ‘early life programming,’ alterations in metabolism and physiological development of the fetus, often termed as ‘Developmental Origins of Health and Disease’ (DOHaD) resulting in a smaller size at birth, greater non-communicable diseases (NCD) risk factors during childhood and adolescence, and cardiometabolic disorders in adulthood. Nevertheless, very few studies have examined the relationship between DOHaD programming and cognition. This study aims to examine if impaired prenatal growth indicated by birth weight is associated with cognition among adolescents in the Kisalaya cohort, a rural birth cohort in South India, thus providing newer insights into DOHaD programming for adolescent mental health in a low-income and middle-income country setting.Methods and analysisKisalaya cohort was established in 2008, to provide integrated antenatal care and HIV testing using mobile clinics to improve maternal and child health outcomes. This cohort included pregnant women residing in 144 villages of Mysuru Taluk (rural) who received antenatal care through mobile clinics and delivered their children between 2008 and 2011. Data related to mother–infant dyads for all pregnant women who received care in the Kisalaya programme are available for this study. Presently, children born to women who received care through Kisalaya are adolescents between 10 and 12 years. At this point, information would be collected on sociodemographic data and assessments of mental health, stressful life events, cognition, vision, speech, language, hearing and anthropometric measures would be done and relevant maternal data and child data, available from the cohort would be retracted for analysis. We plan to retrace as many adolescents as possible out of 1544 adolescents who are currently available for study excluding twins, abortions, stillbirths and postdelivery deaths. Analyses will be extended to construct a life course pathway for cognition using structural equation modelling.
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