Participant Data Collection Research Articles

Ethnographic Strategies for Engaging Deaf Youth Participants: Photovoice and Participatory Analysis

AbstractResearchers across disciplines have looked to deaf individuals and communities to learn about many aspects of human experience, earning deaf people's unique biological and social status a subjugated position in scientific inquiry. All too often deaf people appear in the literature as research “subjects” rather than active, autonomous participants, or partner‐researchers. My research investigated deaf youth identity in Mexico City, Mexico, with a focus on the emic perspectives of my adolescent participants and their families. My focus deaf epistemologies led me to photovoice for data collection and analysis. This article outlines the engagement of deaf youth participants through the participatory visual data collection method photovoice, which allowed me to achieve the goals of a community‐based research design. This article explores the unique needs of deaf youth research participants and epistemological considerations for community‐based work among deaf youth in Mexico City. I discuss innovative ethnographic results revealing deaf youth's emic perspectives through participatory analysis.

Teaching Receiver Operating Characteristic Analysis: An Interactive Laboratory Exercise

Despite its fundamental importance in the evaluation of diagnostic tests, receiver operating characteristic (ROC) analysis is not easily understood. The purpose of this project was to create a learning experience that resulted in an intuitive understanding of the basic principles of ROC analysis. An interactive laboratory exercise was developed for a class about radiology testing taught within a clinical epidemiology course between 2000 and 2009. The physician students in the course were clinical fellows from various medical specialties who were enrolled in a graduate degree program in clinical investigation. For the exercise, the class was divided into six groups. Each group interpreted radiographs from a set of 50 exams of the peripheral skeleton to determine the presence or absence of an acute fracture. Data from the class were pooled and given to each student. Students calculated the area under the ROC curve (AUC) corresponding to overall class performance. A binormal ROC curve was also fitted to the data from each class year. The laboratory exercise was conducted for 8 years with approximately 20-30 students per year. The mean AUC over the eight laboratory classes was 0.72 with a standard deviation of 0.08 (range, 0.60-0.85). With some simplifications in design, an observer study can be conducted in a laboratory classroom setting. Participatory data collection promotes the intuitive understanding of ROC analysis principles.

Assessing the Challenge of Settlement in Budalangi and Yala Swamp Area in Western Kenya Using Landsat Satellite Imagery

The Budalangi area of Kenya exhibits high levels of rural poverty despite its natural resources potential and favourable climate. The area was mapped using multi-temporal remote sensing image data from 1973 to 2009 and participatory data collection. Floods are a recurrent environmental hazard and impede access to environmental resources and agricultural production. The physical setting of Budalangi at the floodplain of Nzoia River and increased runoff from degraded catchments are contributory factors to the flooding. Floods lead to disruption of human settlements and destruction of crops, shelter, dykes and infrastructural facilities. Disease outbreaks also increase due to destruction of sanitation facilities and relocation of settlements in makeshift camps. This implies that the policy measures that have been instituted by the government to mitigate the problem have had dismal impact in the Budalangi and Yala Swamp area. The degradation of the catchment is reflected in its sediment loading and deposition into Lake Victoria which has seen the morphology of the coastline at the mouth of Nzoia River and the aerial coverage by water in the lake change over the years. The overall loss in the area under Yala Swamp is 54 Kmfrom 186 Kmin 1973 to 132 Kmin 2009. The encroachment has significant implication on the wellbeing of the Yala Swamp and the Nzoia Floodplain ecosystem. The study therefore underscores the need to evolve an integrated watershed management plan for effective management of Budalangi and Yala Swamp area and the region in general.

Motivating Zimbabwean secondary school students to learn: A challenge

Motivating Zimbabwean secondary school students to learn has been a daunting task for both parents and teachers. The economic and social situation obtaining in Zimbabwe has not encouraged secondary school students to take education seriously and prepare themselves for service and contribution to nation building and self- development. Thus the study sought to understand factors that militate against student motivation and what can be done to motivate secondary school students to learn, soliciting views from teachers, parents/ guardians and students themselves. The research was a case study of five Masvingo urban secondary schools; employing qualitative data collection methods. These participatory data collection methods were used to get insight and tap into the experiences and views of these three stakeholders on how students could be motivated to learn. The research found that the motivational level of secondary school students was at its lowest ebb mainly because of limited employment prospects and other militating factors. The research recommends that each school establishes a tripartite supervision and communication arrangement involving the parent/guardian, teacher and the student to monitor the student’s school work, behaviour and development. The other recommendation is that Zimbabwe as a nation should seriously embrace student empowerment initiatives by having professionally trained school – based counsellors and increased availability and access to career guidance services thus motivating students to drive their energies towards goals. Key words: Motivation, curriculum relevance, teacher morale, parental involvement, peer pressure.

Adolescent group empowerment: group‐centred occupations to empower adolescents with disabilities in the urban slums of North India

This study aimed to understand how adolescents with disabilities can assume greater control over their rehabilitation and participation within a community-based rehabilitation programme in the urban slums of North India. A critical ethnographical approach using multiple qualitative and participatory data collection methods was adopted. Fieldwork was conducted from January to May 2005 and October 2006 to March 2007 with 21 adolescents with and 11 adolescents without disabilities (aged 12 to 18 years), and 10 community-based rehabilitation staff members. A conceptual framework called the 'Adolescent Group Empowerment Pyramid' was developed. Four themes informed the framework: group participation, group demonstration, group recognition and the socio-cultural environment's interaction with disability. Group empowerment, achieved through group-centred occupations, encourages adolescents to work together to address their rehabilitation challenges and agendas. Three external support factors and 10 areas for nurturing the group empowerment process also emerged. A limitation of this study is the lack of data on how the familial and local political and economic environment impact adolescents' ability to make decisions about their rehabilitation. Further research might explore group occupations and occupational recognition, and what this means for social change and the personal and collective growth of adolescents in underserviced communities.

An Agenda for Policy Change: Participatory Research and Data Collection by Southeast Asian Youth

In a policy-making world that is influenced by “model minority” ideology and racial aggregate data, Southeast Asian Americans have become one of the most underrepresented and misunderstood Asian American communities. Cambodian, Laotian, and Hmong youth leaders in Providence, Rhode Island, protested this lack of representation by surveying 16 percent of the city’s Southeast Asian youth population. This data became the first of its kind to provide a quantitative and qualitative portrait of the lives and issues experienced by the city’s Southeast Asian residents. Youth leaders were trained in survey administration and data analysis in order to design and execute the survey. Survey results revealed the very intricate and oppressive realities faced by Southeast Asian youth, including lack of education, gang violence, racial profiling, inter-generational conflict, as well cultural conflict over ideas of gender and sexuality. Youth leaders used the data and a process of consensus decision making to develop a list of policy-change recommendations targeting Rhode Island decision makers and power brokers.

An Agenda for Policy Change: Participatory Research and Data Collection by Southeast Asian Youth

In a policy-making world that is influenced by “model minority” ideology and racial aggregate data, Southeast Asian Americans have become one of the most underrepresented and misunderstood Asian American communities. Cambodian, Laotian, and Hmong youth leaders in Providence, Rhode Island, protested this lack of representation by surveying 16 percent of the city's Southeast Asian youth population. This data became the first of its kind to provide a quantitative and qualitative portrait of the lives and issues experienced by the city's Southeast Asian residents. Youth leaders were trained in survey administration and data analysis in order to design and execute the survey. Survey results revealed the very intricate and oppressive realities faced by Southeast Asian youth, including lack of education, gang violence, racial profiling, inter-generational conflict, as well cultural conflict over ideas of gender and sexuality. Youth leaders used the data and a process of consensus decision making to develop a lis...

Safety in home care: A research protocol for studying medication management.

BackgroundPatient safety is an ongoing global priority, with medication safety considered a prevalent, high-risk area of concern. Yet, we have little understanding of the supports and barriers to safe medication management in the Canadian home care environment. There is a clear need to engage the providers and recipients of care in studying and improving medication safety with collaborative approaches to exploring the nature and safety of medication management in home care.MethodsA socio-ecological perspective on health and health systems drives our iterative qualitative study on medication safety with elderly home care clients, family members and other informal caregivers, and home care providers. As we purposively sample across four Canadian provinces: Alberta (AB), Ontario (ON), Quebec (QC) and Nova Scotia (NS), we will collect textual and visual data through home-based interviews, participant-led photo walkabouts of the home, and photo elicitation sessions at clients' kitchen tables. Using successive rounds of interpretive description and human factors engineering analyses, we will generate robust descriptions of managing medication at home within each provincial sample and across the four-province group. We will validate our initial interpretations through photo elicitation focus groups with home care providers in each province to develop a refined description of the phenomenon that can inform future decision-making, quality improvement efforts, and research.DiscussionThe application of interpretive and human factors lenses to the visual and textual data is expected to yield findings that advance our understanding of the issues, challenges, and risk-mitigating strategies related to medication safety in home care. The images are powerful knowledge translation tools for sharing what we learn with participants, decision makers, other healthcare audiences, and the public. In addition, participants engage in knowledge exchange throughout the study with the use of participatory data collection methods.

A Picture’s Worth a Thousand Words: Engaging Youth in CBPR Using the Creative Arts

Engaging youth and incorporating their unique expertise into the research process is important when addressing issues related to their health. Visual Voices is an arts-based participatory data collection method designed to work together with young people and communities to collaboratively elicit, examine, and celebrate the perspectives of youth. To present a process for using the creative arts with young people as a participatory data collection method and to give examples of their perspectives on safety and violence. Using the creative arts, this study examined and illustrates the perspectives of how community factors influence safety and violence. Visual Voices was conducted with a total of 22 African-American youth in two urban neighborhoods. This method included creative arts-based writing, drawing, and painting activities designed to yield culturally relevant data generated and explored by youth. Qualitative data were captured through the creative content of writings, drawings, and paintings created by the youths as well as transcripts from audio recorded group discussion. Data was analyzed for thematic content and triangulated across traditional and nontraditional mediums. Findings were interpreted with participants and shared publicly for further reflection and utilization. The youth participants identified a range of issues related to community factors, community safety, and violence. Such topics included the role of schools and social networks within the community as safe places and corner stores and abandoned houses as unsafe places. Visual Voices is a creative research method that provides a unique opportunity for youth to generate a range of ideas through access to the multiple creative methods provided. It is an innovative process that generates rich and valuable data about topics of interest and the lived experiences of young community members.

A participatory evaluation of community-based rehabilitation programme in North Central Vietnam

Purpose: The purpose of this study was to conduct a participatory evaluation of the community-based rehabilitation (CBR) programme in North Central Vietnam to ascertain the extent of success with the World Health Organization (WHO) model. In 1992, for the first time a non-governmental organization (NGO) was formed in this region to plan and implement the CBR approach based on the WHO model for meeting the needs of persons with disabilities (PWD). The programme is currently being implemented in ten districts and has been able to affect 24.6% of PWD in this region. Methods: A framework of strengths, weaknesses, opportunities and threats (SWOT) analysis was used. Participatory data collection was done at the village, commune, district, provincial, and central levels using semi-structured interviews and focus group discussions. The data were examined against the five principles of the WHO model: available resource utilization, knowledge transfer, community participation, referral services strengthening and multisectoral coordination. Results: The strengths, weaknesses, opportunities, and threats across all levels were collated and presented. Conclusion: Specific strengths have been found in three out of five principles of the WHO Model. The programme would benefit by consolidating on the positive aspects in years to come.