METHODS: This pilot of a participatory modeling approach was conducted over a span of 7 sessions and included the following steps, each with an associated script: Step 1: Knowledge-Bearer and Knowledge-Interpreter recruitment Step 2: Relationship building Step 3: Session introduction, Vignette development & enrichment Step 4: Vignette analysis & constructing architecture of systems map Step 5: Augmenting architecture of systems map RESULTS: Each step of the participatory modeling approach resulted in artifacts that were valuable for both the communities and the research effort. Vignette construction resulted in narratives representing a spectrum of lived experiences, trajectories, and outcomes within a community. The collaborative analysis of vignettes yielded the Architecture of Systemic Factors map, that revealed how factors inter-relate to form a system in which lived experience of poverty occurs. A literature search provided an opportunity for the community to contextualize existing research about them using realities of lived experience.
CONCLUSION: This methodology showed that a community Knowledge Bearer can function as communicators and interpreters of their community's knowledge base, can develop coherent narratives of lived experiences within which research and knowledge is contextualized, and can collaboratively construct conceptual mappings necessary for simulation modeling. This participatory modeling approach showed that even if there already exists a vast body of research about a community, collaborating with community gives context to that research and brings together disparate findings within narratives of lived experience.
DESIGN: This CBPR design in implementation comprised in-depth interviews (IDIs) and focus group discussions (FGDs). Themes were identified from the data with inductive and deductive thematic analysis.
SETTING: FGDs were conducted in local community areas and IDIs were conducted in the local authority (LA) office and the Hulu Langat district health office.
PARTICIPANTS: All FGD and IDI participants consented to the study, and included health authorities (n=4), LAs (n=7), community leader (n=1), faith leader (n=1), patients diagnosed with dengue (IDIs, n=2) and permanent residents of Hulu Langat who had been exposed to dengue infectious disease (FGDs, n=27).
RESULTS: The main themes were categorised into community behaviour and stakeholder challenges. The community behaviour-related themes were awareness of dengue disease and Aedes mosquitoes, perception of risk and severity, and involvement of authorities. The themes related to stakeholder challenges were resource constraints and capacity issues, jurisdictional constraints and coordination, and educational dissemination and vandalism.
CONCLUSIONS: The actions of the authorities shape community and stakeholder behaviours. Effective communication, including clear and aesthetically pleasing messages, motivates individuals to take appropriate actions. It is crucial for the authorities to engage in inclusive communication and consider diverse perspectives, such as those of residents and individuals exposed to dengue infection. Authorities that provide accurate and unbiased information foster transparency and enable informed decision-making by all stakeholders.
METHODS: Between 1 November 2021 and 28 February 2022, we conducted a study in Kudat district, Sabah, using a multi-method design. All participants consented to the study, which included health care workers (HCWs) (n = 5), community leaders (n = 8), and faith leaders (n = 1). We conducted interviews, transect walks, and observations with gatekeepers to ensure data trustworthiness. All interviews were conducted in the Sabah Malay dialect. The sessions were audio- and video-recorded, transcribed into English and analyzed using thematic analysis.
RESULTS: Between 2017 and 2021, the number of cases of P. knowlesi malaria detected in humans ranged from 35 to 87 in villages under the care of the Lotong primary health care clinic. The challenges in controlling malaria include social norms, lifestyles, socioeconomic factors, environmental factors, and limitations of basic resources. Critical discussions regarding participation with the gatekeepers identified that face-to-face interviews were preferable to online discussions, and influenced willingness to participate in future research.
CONCLUSION: This study was conducted among village gatekeepers during the COVID-19 pandemic and generated information to drive methodological changes, opening up new ideas by sharing perspectives on challenges in P. knowlesi malaria control among vulnerable communities. The study generated trust in the community and expanded knowledge regarding participation that is critical for future community-based studies.
MAIN TEXT: To overcome these barriers, stakeholders will need to design policies and work in ways that provide an enabling environment for innovative products and services. Inherently about people, the incorporation of community engagement approaches is necessary for both the development of social innovations and accompanying research methodologies. Whilst the 'appropriate' level of participation is linked to intended outcomes, researchers have a role to play in better understanding how to harness the power of community engagement and to ensure that community perspectives form part of the evidence base that informs policy and practice.
CONCLUSIONS: To effectively operate at the intersection between policy, social innovation, and research, all collaborators need to enter the process with the mindset of learners, rather than experts. Methods - quantitative and qualitative - must be selected according to research questions. The fields of implementation research, community-based participatory research, and realist research, amongst others, have much to offer. So do other sectors, notably education and business. In all this, researchers must assume the mantel of responsibility for research and not transfer the onus to communities under the guise of participation. By leveraging the expertise and knowledge of different ecosystem actors, we can design responsive health systems that integrate innovative approaches in ways that are greater than the sum of their parts.
DESIGN: This is a prospective, cohort study involving rural community residents.
SETTING: Rural community resident at Bingkor, Keningau, Sabah.
PARTICIPANTS: 363 individuals aged 13 years old and above.
INTERVENTION: Community-based participatory research to determine the prevalence and risk factors associated with alcohol use.
MAIN OUTCOME MEASURES: Measurement of alcohol use using Alcohol Use Disorders Identification Test (AUDIT) and assessment of psychiatric morbidity using Mini International Neuropsychiatric Interview (MINI) questionnaires.
RESULTS: Most alcohol drinkers aged between 36-45 years old, followed by 26-35 years old and 46-55 years old. Interestingly, there are almost similar female to male ratio. Most were Kadazan-Dusun ethnic, non-Muslims, and married. Although only less than a third of the participants received tertiary education, the majority were working. Based on the findings, being a male, non-Muslim and having an obsessive-compulsive disorder (OCD) (current) posed a significantly higher risk of alcohol consumption.
CONCLUSION: A worryingly high prevalence of hazardous alcohol consumption among the locals is reported. There is a need for population-wide intervention towards preventive measures based on the identified risk factors for hazardous alcohol use.
Methods: A community-based participatory research method was utilized. Two focus group discussions (FGDs) were conducted in Malaysian sign language (BIM) with a total of 10 DHH individuals. Respondents were recruited using purposive sampling. Video-recordings were transcribed and analyzed using a thematic approach.
Results: Two themes emerged: (I) challenges and scepticism of the healthcare system; and (II) features of the mHealth app. Respondents expressed fears and concerns about accessing healthcare services, and stressed on the need for sign language interpreters. There were also concerns about data privacy and security. With regard to app features, the majority preferred videos instead of text to convey information about their disease and medication, due to their lower literacy levels.
Conclusions: For an mHealth app to be effective, app designers must ensure the app is individualised according to the cultural and linguistic diversity of the target audience. Pharmacists should also educate patients on the potential benefits of the app in terms of assisting patients with their medicine-taking.
METHODS: This was a quasi-experimental study conducted in two sub-urban communities in Seremban, Malaysia. A total of 268 participants with prediabetes aged between 18 to 65 years old were assigned to either the community-based lifestyle intervention (Co-HELP) (n = 122) or the usual care (n = 146) groups. The Co-HELP program was delivered in partnership with the existing community volunteers to incorporate diet, physical activity, and behaviour modification strategies. Participants in the Co-HELP group received twelve group-based sessions and two individual counselling to reinforce behavioural change. Participants in the usual care group received standard health education from primary health providers in the clinic setting. Primary outcomes were fasting blood glucose, 2-hour plasma glucose, and HbA1C. Secondary outcomes included weight, BMI, waist circumference, total cholesterol, triglyceride, LDL cholesterol, HDL cholesterol, systolic and diastolic blood pressure, physical activity, diet, and health-related quality of life (HRQOL).
RESULTS: An intention-to-treat analysis of between-groups at 12-month (mean difference, 95% CI) revealed that the Co-HELP participants' mean fasting plasma glucose reduced by -0.40 mmol/l (-0.51 to -0.28, p<0.001), 2-hour post glucose by -0.58 mmol/l (-0.91 to -0.24, p<0.001), HbA1C by -0.24% (-0.34 to -0.15, p<0.001), diastolic blood pressure by -2.63 mmHg (-3.79 to -1.48, p<0.01), and waist circumference by -2.44 cm (-4.75 to -0.12, p<0.05) whereas HDL cholesterol increased by 0.12 mmol/l (0.05 to 0.13, p<0.01), compared to the usual care group. Significant improvements were also found in HRQOL for both physical component (PCS) by 6.51 points (5.21 to 7.80, p<0.001) and mental component (MCS) by 7.79 points (6.44 to 9.14, p<0.001). Greater proportion of participants from the Co-HELP group met the clinical recommended target of 5% or more weight loss from the initial weight (24.6% vs 3.4%, p<0.001) and physical activity of >600 METS/min/wk (60.7% vs 32.2%, p<0.001) compared to the usual care group.
CONCLUSIONS: This study provides evidence that a culturally adapted diabetes prevention program can be implemented in the community setting, with reduction of several diabetes risk factors and improvement of HRQOL. Collaboration with existing community partners demonstrated a promising channel for the wide-scale dissemination of diabetes prevention at the community level. Further studies are required to determine whether similar outcomes could be achieved in communities with different socioeconomic backgrounds and geographical areas.
TRIAL REGISTRATION: IRCT201104106163N1.
METHODS: In-depth interviews, observations, informal conversational interviews, mystery client and critical incident technique were used. We estimated the size of FEW population using the census enumeration technique. The findings were used to inform intervention development and implementation.
RESULTS: We estimated 376 Vietnamese and 330 Thai FEWs in 2 geographical sites where they operated in Singapore. Their reasons for non-condom use included misconceptions on the transmission and consequences of STI/HIV, low risk perception of contracting HIV/STI from paid/casual partner, lack of skills to negotiate or to persuade partner to use condom, unavailability of condoms in entertainment establishments and fear of the police using condom as circumstantial evidence. They faced difficulties in accessing health services due to fear of identity exposure, stigmatisation, cost and language differences. To develop the intervention, we involved FEWs and peer educators, and ensured that the intervention was non-stigmatising and met their needs. To foster their participation, we used culturally-responsive recruitment strategies, and ensured that the trial was anonymous and acceptable to the FEWs. These strategies were effective as we achieved a participation rate of 90.3%, a follow-up rate of 70.5% for the comparison and 66.8% for the intervention group. The interventions group reported a significant increase in consistent condom use with a reduction in STI incidence compared to no significant change in the comparison group.
CONCLUSIONS: The qualitative inquiry approaches to gain access, to foster participation and to develop a culturally appropriate intervention, along with the census enumeration technique application to estimate the FEW population sizes has led to successful intervention implementation as well as safer sexual behaviour and STI incidence reduction.
TRIAL REGISTRATION: ClinicalTrials.gov, NCT02780986 . Registered 23 May 2016 (retrospectively registered).