Introduction Understanding local complexities and challenges of stroke-related caregiving are essential to develop appropriate interventions. Our study aimed to characterize the impact of post-stroke care among caregivers in a setting of transitioning economy. Materials and Methods Qualitative study based on in-depth interviews with primary caregivers of stroke survivors in Lima, Peru. Transcribed data was organized into the emotional impact of caregiving, main stress factors and coping mechanisms to deal with the caregiving role, as well as the unmet needs of caregivers. Results We interviewed twelve caregivers, mean age 52.5 years, 8/12 were females, who were either the spouse or child of the stroke survivor. Stroke patients had a median age of 70 years, range 53–85 years. All participants reported having experienced emotional stress and depressive symptoms as a result of caregiving. Although most had family support, reduced social activities and added unanticipated financial burdens increased caregiver’s stress. None of the caregivers had received training in post-stroke care tasks after the patient’s discharge and only a few had received some psychological support, yet almost all expressed the need to see a professional to improve their mental health. Keeping a positive attitude towards their relative’s physical post-stroke condition was a key coping mechanism. Conclusions In the absence of structured institutional responses, family members endure with the provision of care for stroke survivors, a task escorted by major emotional, financial, and social strains. This burden could be prevented or curtailed if caregivers were to be targeted by interventions providing psychological and financial support, together with basic training on post-stroke care.
Family support is crucial for managing chronic conditions but it is often overlooked when designing behavioral interventions in type 2 diabetes mellitus (T2DM). As part of the formative phase of a feasibility randomized control trial (RCT), we conducted 20 semistructured interviews with people with T2DM from Lima, Peru. Based on such results, we describe the support people with T2DM receive from their families and the role that such support has in their efforts to implement diabetes management practices. We learned that participants receive support from family members, but mostly from their spouses and children. Their relatives encourage them and motivate them to fight for their health, they also provide instrumental support by preparing healthy meals, reminding them to take medications, and sharing physical activity. Participants also reported controlling actions which were not always "well received." Thus, any intervention supporting self-management practices need to work with key family members. We support the literature that suggests that interventions should target family members to ensure improved T2DM self-management practices.
Background Process evaluation is increasingly recognized as an important component of effective implementation research and yet, there has been surprisingly little work to understand what constitutes best practice. Researchers use different methodologies describing causal pathways and understanding barriers and facilitators to implementation of interventions in diverse contexts and settings. We report on challenges and lessons learned from undertaking process evaluation of seven hypertension intervention trials funded through the Global Alliance of Chronic Diseases (GACD). Methods Preliminary data collected from the GACD hypertension teams in 2015 were used to inform a template for data collection. Case study themes included: (1) description of the intervention, (2) objectives of the process evaluation, (3) methods including theoretical basis, (4) main findings of the study and the process evaluation, (5) implications for the project, policy and research practice and (6) lessons for future process evaluations. The information was summarized and reported descriptively and narratively and key lessons were identified. Results The case studies were from low- and middle-income countries and Indigenous communities in Canada. They were implementation research projects with intervention arm. Six theoretical approaches were used but most comprised of mixed-methods approaches. Each of the process evaluations generated findings on whether interventions were implemented with fidelity, the extent of capacity building, contextual factors and the extent to which relationships between researchers and community impacted on intervention implementation. The most important learning was that although process evaluation is time consuming, it enhances understanding of factors affecting implementation of complex interventions. The research highlighted the need to initiate process evaluations early on in the project, to help guide design of the intervention; and the importance of effective communication between researchers responsible for trial implementation, process evaluation and outcome evaluation. Conclusion This research demonstrates the important role of process evaluation in understanding implementation process of complex interventions. This can help to highlight a broad range of system requirements such as new policies and capacity building to support implementation. Process evaluation is crucial in understanding contextual factors that may impact intervention implementation which is important in considering whether or not the intervention can be translated to other contexts. Electronic supplementary material The online version of this article (10.1186/s12889-019-7261-8) contains supplementary material, which is available to authorized users.
Background: Co-creation is the process of involving stakeholders in the development of interventions. Although co-creation is becoming more widespread, reports of the process and lessons learned are scarce. Objective: To describe the process and lessons learned from using the COHESION manual, a co-creation methodology to develop interventions aimed at the improvement of diagnosis and/or management of chronic diseases at the primary healthcare level in a low-resource setting in Peru. Methods: Observational study to describe the use of the COHESION manual 'Moving from Research to Interventions: The COHESION Model' developed for a multi-country project in low-and middle-income countries for co-creation and the adaptations needed to customize it to the local context of rural communities in northern Peru. Results: The actual process of co-creation in Peru included co-creation-related questions in the formative research; an initial consultation with stakeholders at the micro, meso, and macro levels (e.g. community members, health workers, and policy-makers); the analysis of the collected data; a second consultation with each stakeholder group; the prioritization of intervention options; and finally the design of a theory of change for all activities included in the complex intervention. The complex intervention included: 1) offer training in specific diseases and soft skills to health workers, 2) create radio programs that promote chronic disease prevention and management plus empower patients to ask questions during their visits to primary health care (PHC) facilities, and 3) provide a small grant to the PHC for infrastructure improvement. Small adaptations to the COHESION manual were necessary for this co-creation process. Conclusion: This study provides a practical example of the process of co-creating complex interventions to increase access and quality of health care in a low-resource setting. The process, components, challenges and opportunities identified could be useful for other researchers who want to co-create interventions with beneficiaries in similar settings.
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