Variation in the interpretation of scientific integrity in community-based participatory health research

Community-based participatory research (CBPR) has become essential in health disparities and environmental justice research; however, the scientific integrity of CBPR projects has become a concern. Some concerns, such as appropriate research training, lack of access to resources and finances, have been discussed as possibly limiting the scientific integrity of a project. Prior to understanding what threatens scientific integrity in CBPR, it is vital to understand what scientific integrity means for the professional and community investigators who are involved in CBPR.This analysis explores the interpretation of scientific integrity in CBPR among 74 professional and community research team members from of 25 CBPR projects in nine states in the southeastern United States in 2012. It describes the basic definition for scientific integrity and then explores variations in the interpretation of scientific integrity in CBPR. Variations in the interpretations were associated with team member identity as professional or community investigators. Professional investigators understood scientific integrity in CBPR as either conceptually or logistically flexible, as challenging to balance with community needs, or no different than traditional scientific integrity. Community investigators interpret other factors as important in scientific integrity, such as trust, accountability, and overall benefit to the community. This research demonstrates that the variations in the interpretation of scientific integrity in CBPR call for a new definition of scientific integrity in CBPR that takes into account the understanding and needs of all investigators.     

Methods and issues in conducting a community-based environmental randomized trial

The environment is suspected to play an important role in the prevalence and severity of asthma in inner-city children. This paper describes the implementation and baseline data of an inner-city community-based participatory research clinical trial designed to test the effectiveness of a pollutant and allergen control strategy on children's asthma morbidity. Participants were 100 elementary-school-aged children with asthma, graduates of a school-based asthma education program in East Baltimore. The intervention for half of the randomly assigned families consisted of environmental control education, allergen-proof encasements, pest extermination, and a HEPA air cleaner at the beginning of the study. Controls received the same at the end of the study. Participants visited a clinic for questionnaires, allergy skin testing, spirometry, and blood sample at baseline and 12 months. Home environments, NO(2), O(3), airborne particulates, and allergens were evaluated at baseline and at 6 and 12 months. Asthma morbidity and adherence was assessed quarterly. Collaboration with the community proved very beneficial in creating a study design and procedures acceptable to an inner-city community.     

Opening doors and building capacity: Employing a community-based approach to surveying

Although many community-based initiatives employ community residents to undertake door-to-door surveys as a form of community mobilization or for purposes of needs assessment or evaluation, very little has been published on the strengths and weaknesses of this approach. This article discusses our experience in undertaking such a survey in collaboration with a coalition of community-based organizations (CBOs) in the South Bronx, New York. Although resource constraints limited the already-strained capacity of the CBOs to provide supervision, the CBOs and community surveyors helped us gain access to neighborhood buildings and to individuals who might otherwise have been inaccessible. The survey process also contributed to the coalition’s community outreach efforts and helped to link the CBO leadership and staff more closely to the coalition and its mission. Many of the surveyors enhanced their knowledge and skills in ways that have since benefited them or the coalition directly. The participating CBOs continue to be deeply engaged in the coalitions’ work, and many of the surveyors are active as community health advocates and have taken leadership roles within the coalition.     

Monitoring population disability: evaluation of a new Global Activity Limitation Indicator (GALI)

Summary. Objective To evaluate a single item instrument, the Global Activity Limitation Indicator (GALI), to measure long-standing health related activity limitations, against several health indicators: a composite morbidity indicator, instruments measuring mental health (SCL-90R, GHQ-12), physical co-morbidity and physical limitations (ADLs, SF-36). Methods Cross-sectional data (n = 9168) of the 2001-National Health Interview Survey in Belgium was used to compare the GALI with other health indicators across gender, age, educational attainment and language. Results Responses to the GALI were similar to responses to other indicators of physical limitations (Limitations in Activities of Daily Living (by severity or by number of limitations), the SF-36 physical domain), to an indicator of chronic physical comorbidity and to indicators of mental health. The probability of reporting absence of long-standing activity limitation with the GALI was high in subjects without physical limitations or physical or mental conditions. This probability decreased as the severity or number of limitations, the number of physical or mental conditions increased. Conclusions The GALI performs appropriately against other health indicators and appears to refl ect long-standing activity limitation associated with both mental and physical conditions.

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Electronic Supplementary Material Supplementary material is available to authorised users in the online version of this article at . Submitted: 14 March 2005 Accepted: 28 February 2006     

Description of YESHealth: A consumer-directed intervention in a randomized trial of methods to improve quality of care for persons with disability

Background

Persons leading their own evaluations of care quality offers the promise of generating maximally meaningful information to ensure person-centered care.

The disability rating index: An instrument for the assessment of disability in clinical settings

The purpose of this study was to evaluate an instrument for assessment of physical disability, mainly intended for clinical settings, the Disability Rating Index (DRI). Healthy persons (n = 1092), both white and blue collar workers, and patients (n = 366) with different levels of physical capacity, were assessed. Most of the patients (n = 303) underwent rehabilitation programmes for neck/shoulder/low-back pain but some (n = 47) were arthritis patients waiting for hip or knee replacement surgery, or wheelchair patients with multiple sclerosis (n = 16). The reliability was investigated by test-retest studies, intra- and inter-rater and internal consistency studies. Five construct validity tests were carried out: a discrimination study; a converging validity test; a test for sensitivity to small alterations in health status; and two correlational validity tests. Correlation of the self-reported DRI to the actual performance in similar activities was carried out. Responsiveness was tested by correlation of the DRI before/after replacement surgery for arthritis. The test-retest correlations were 0.83–0.95 in the studies, including correlation of different versions. The intra- and inter-rater reproducibility was 0.98 and 0.99 respectively. The Kruskal-Wallis test in the discrimination study yielded p < 0.0001. More than 90% of the respondents completed the questionnaire correctly. Correlation of the DRI to the Functional Status Questionnaire was 0.46. The responsiveness was excellent, p = 0.0001. The DRI proved to be a robust, practical clinical and research instrument with good responsiveness and acceptability for assessment of disability caused by impairment of common motor functions.     

Ethnographically Informed Community Evaluation: A Framework and Approach for Evaluating Community-Based Initiatives

Objectives: This paper describes ethnographically informed community evaluation (EICE), a framework for evaluating complex community-based interventions, and illustrates its use in the evaluation of Baltimore City Healthy Start, a federally funded infant mortality prevention project. EICE, which is influenced by cultural anthropology and assets-based community assessment, supports continuous program improvement, resident involvement, and measurement of community-level change. This approach takes into account both individual and contextual levels of analysis. Methods: The evaluation coupled a participatory approach with qualitative and survey research methods to study community context and how it might contribute to infant mortality and influence program implementation, and to assess community change resulting from the program. Data collection included focus groups, key informant interviews, surveys, neighborhood mapping, journaling, and a study of community problem-solving. Results: The evaluation provided program-related feedback to staff, contributed to a collective understanding of the local context, validated and augmented outcome findings, and imparted skills and a sense of empowerment to the neighborhood. Results reveal a community burdened by crime and social problems, yet showing great diversity in physical and social conditions when examined at the census block group level. Nevertheless, these social and physical hazards in the community are more salient than any specific health issue such as infant mortality. Conclusions: EICE is a powerful evaluation approach able to respond to the complexities of community-based maternal and child health initiatives designed to institute changes across multiple domains. EICE may be used, in whole or in part, as a supplement to traditional designs.     

Engaging Urban Residents in Assessing Neighborhood Environments and Their Implications for Health

Researchers have worked to delineate the manner in which urban environments reflect broader social processes, such as those creating racially, ethnically and economically segregated communities with vast differences in aspects of the built environment, opportunity structures, social environments, and environmental exposures. Interdisciplinary research is essential to gain an enhanced understanding of the complex relationships between these stressors and protective factors in urban environments and health. The purpose of this study was to examine the ways that multiple factors may intersect to influence the social and physical context and health within three areas of Detroit, Michigan. We describe the study design and results from seven focus groups conducted by the Healthy Environments Partnership (HEP) and how the results informed the development of a survey questionnaire and environmental audit tool. The findings from the stress process exercise used in the focus groups described here validated the relevance of a number of existing concepts and measures, suggested modifications of others, and evoked several new concepts and measures that may not have been captured without this process, all of which were subsequently included in the survey and environmental audit conducted by HEP. Including both qualitative and quantitative methods can enrich research and maximize the extent to which research questions being asked and hypotheses being tested are driven by the experiences of residents themselves, which can enhance our efforts to identify strategies to improve the physical and social environments of urban areas and, in so doing, reduce inequities in health.Israel, Schulz, and Estrada-Martinez are with the University of Michigan School of Public Health, 1420 Washington Heights, Ann Arbor, MI 48109-2029, USA; Zenk is with the University of Illinois, Chicago, IL, USA; Viruell-Fuentes is with the Harvard School of Public Health, Boston, MA, USA; Villarruel is with the University of Michigan School of Nursing, Ann Arbor, MI, USA; Stokes is with the University of Detroit-Mercy, Detroit, MI, USA.     

上海市中老年社区居民对性教育态度及相关因素分析

目的 了解上海市中老年社区居民对性教育的态度及其相关因素。方法 2020年6月至2022年12月,通过多阶段抽样方法,对上海市≥50岁中老年社区居民开展一项横断面调查。样本量估计数为735人。问卷包括社会人口学特征、健康特征、性教育史等相关信息。采用多因素logistic回归模型分析中老年社区居民对性教育态度的相关因素。结果 研究对象824人中,男性489人,女性335人,年龄（65.1±8.1）岁,年龄范围为60~69岁（45.3%）。49.4%的参与者支持在中老年人群中开展性教育（男性：45.2%;女性：55.5%）。多因素logistic回归分析结果显示,男性（aOR=0.61,95%CI：0.44~0.83）、≥70岁（aOR=0.62,95%CI：0.40~0.94）、城镇居民（aOR=2.54,95%CI：1.81~3.58）、自评健康状况为好/非常好（aOR=1.64,95%CI：1.04~2.58）、有抑郁症状（aOR=0.37,95%CI：0.15~0.85）、接受过性教育（aOR=8.64,95%CI：4.62~17.70）与其对性教育的态度有关。结论 上海市中老年社区居民中支持性教育的比例不高。该人群对性教育的态度与自评健康状况、抑郁症状、性教育史相关,专业医疗人员或医疗机构应着重关注具有关键特征的中老年社区居民,定制化干预以期提高我国中老年居民性健康教育支持意愿,促进性教育在该人群中的普及。     

连续性服务路径下高血压控制效果评价——一项农村社区干预实验

目的:为提高农村地区高血压人群血压控制率,设计连续性服务路径干预方案,通过现场干预和人群对照研究,论证方案有效性,并探索其他影响因素。方法:连续性服务路径包括连续性社区保健路径、临床诊疗路径和综合管理路径。2012年7月—2014年6月,选取重庆黔江4乡镇分为2组进行干预,分层随机抽样患者进行对照。采取双重差分模型对血压值和血压控制率进行分析。结果:853名患者接受基线调查,最终随访712人。经检验,乡镇和患者因素不构成干扰,组间血压值具有可比性。相比对照组,实验组血压值下降10.156 mm Hg(P0.001),血压控制率上升27.6%(P0.001)。家庭结构、教育水平和到医疗机构的距离对血压值的降低有显著影响。结论:连续性服务路径有利于降低血压值,提高血压控制率;其中血压控制率变化更敏感。建议通过增加患者社会支持、强化慢病健康教育、改善公共交通服务,进一步提高农村高血压患者慢病管理效果。     

New obstacles and widening gaps: A qualitative study of the effects of the COVID-19 pandemic on U.S. adults with disabilities

BackgroundPrior research has demonstrated that the needs of the disability community have not been met during public health emergencies. The COVID-19 pandemic has exacerbated existing inequities for many populations including people with disabilities, and data is needed to develop inclusive public health response policies.ObjectiveTo identify how COVID-19 has uniquely impacted the lives of adults with disabilities.Methods38 participants were recruited through disability advocacy groups and social media. Semi-structured virtual focus groups were conducted with adults (≥18 years) who self-identified as having a disability. Focus groups were conducted for each of six disability sub-groups: vision, hearing, mobility and physical, mental health, cognitive, intellectual, and developmental, and chronic illness. Using inductive coding, major themes were identified and compared across the disability sub-groups.ResultsThree major themes and thirteen sub-themes were identified from the focus groups. The three major themes comprised: new problems created by the pandemic, obstacles in daily life that were exacerbated by the pandemic, and broader changes to accessibility and disability identity. Sub-themes such as difficulty with COVID-19 testing and regular medical care were reported by participants of all disability sub-groups, while other sub-themes like direct care needs and medical rationing were reported by participants from a subset of the disability sub-groups.ConclusionsThese results indicate how the COVID-19 pandemic unequally impacts disabled people. The participants indicated that to fully address their needs, disability perspectives must be included in the public health pandemic response. As new research shows that COVID-19 can cause long-term disability, the urgency to ensure the disability community is part of public health policies will increase.     

Teoría del cambio aplicada al programa de promoción de la actividad física «La Ribera Camina»

ObjectiveTo develop a theory of change of a program to promote physical activity in eleven health districts, in order to improve its design and plan its evaluation.MethodFour focus groups were carried out, to develop a participatory theory of change, to identify the expected changes (long, medium and short term) of “La Ribera Camina” program, according to the following stakeholders: primary healthcare professionals, local government representatives and community members. A thematic analysis was used to identify the actions to be taken to achieve these changes, as well as the difficulties and facilitators to enhance the sustainability of the program.ResultsThe identified changes were classified into four themes: 1) changes in physical and social health (improved physical condition, healthy habits, self-esteem and perceived well-being); 2) organizational and relational changes (better coordination between institutions); 3) specific changes to the program (incorporation of more “assets” and local associations, especially male participants, more trails and schedules); and 4) changes in the environment (improved trails’ infrastructures and safety).ConclusionsThe theory of change allows to identify and classify the changes that are expected, the actions to be carried out and the links between elements of the program. This will serve as the basis for its evaluation. This methodology could be applied to other programs interested in incorporating intersectorality and community engagement in their design and evaluation.     

天津市中老年社区居民性活跃现状及相关因素分析

目的 了解天津市中老年社区居民性活跃现状及其相关因素。方法 2020年6月至2022年12月,通过多阶段抽样方法,对天津市≥50岁中老年社区居民开展横断面调查。样本量估计数为735名。通过调查员面对面收集问卷,包括社会人口学特征、健康特征以及性生活方式有关特征等相关信息。采用多因素logistic回归模型分析性活跃状态的相关因素。结果 共纳入776名研究对象（男性和女性分别为510名和266名）,年龄以50~59岁（45.9%）为主。总体性活跃率为45.6%。年龄更大（60~69岁：aOR=0.67,95%CI：0.45~0.99;≥70岁：aOR=0.12,95%CI：0.07~0.21）、男性（aOR=1.93,95%CI：1.32~2.82）、城镇居民（aOR=0.18,95%CI：0.12~0.28）、同居/已婚（aOR=2.80,95%CI：1.41~5.58）、独居（aOR=0.51,95%CI：0.27~0.96）、爬楼或行走困难（aOR=0.55,95%CI：0.31~0.97）、现患慢性病（1种：aOR=0.55,95%CI：0.36~0.85;≥2种：aOR=0.53,95%CI：0.33~0.84）与性活跃状态有关。结论 相当比例的中老年社区居民仍然保持性活跃。身体健康状况与中老年社区居民的性活跃状态存在关联。应将性健康服务纳入中老年社区居民卫生保健服务范围,加强社区卫生服务人员的性健康相关服务意识和技能。     

宁波市建设新农村健康素质评价研究

目的：探讨宁波市建设新农村健康素质实现状况及其对策。方法：以线性综合加权法对建设新农村健康素质进行评价,并以宁波市2003-2007年新农村健康素质进行验证。结果：设计出以健康素质效果、健康投入与可持续发展支撑、健康公平与效率为＂度＂,包含22个基本指标为＂级＂的三度二级指标体系,实评结果表明宁波市2003-2007年建设新农村健康素质呈现出不均衡性,与实际情况基本相符。结论：文章提出的建设新农村健康素质评价体系是一种实用、有效的评价方法,并认为构建新农村公共健康保障机制,应具体问题具体分析,强化＂公共医疗卫生＂理念,加大政府卫生投入,预防控制影响农民健康的重大疾病,提高农民健康水平。     

成都市某社区卫生服务机构健康教育工作现状

目的了解社区卫生服务机构健康教育工作现状及工作人员对健康教育知识能力水平的掌握和对健康教育培训的需求。方法对社区卫生服务机构人员进行专题小组讨论与深入访谈。结果参与专题小组讨论的人员中以临床医生为主,占总人数的35.8%,其次为防保人员,占29.9%。调查对象的职称分布为初级及初级以下占80%,中级职称占19.4%。13名中心主任中,中级以上职称的有9人。该区13个社区卫生服务机构均已开展健康教育工作,主要针对慢性病、常见病与多发病。13组专题讨论结果显示,社区卫生服务中心工作人员对健康教育这一概念模糊甚至完全不清楚。结论加强社区卫生服务中心健康教育工作,提高社区卫生服务中心工作人员知识更新,制定适合全科医生的健康教育培训计划是非常有必要的。     

Nutritional status evaluation in critical care: A study of clinical practices

Background & aimsMalnutrition is a common consequence in critically ill patients admitted to the intensive care unit (ICU).ObjectiveThe aim of this study was to assess the current clinical practices concerning nutritional screening and assessment in multiple Tunisian intensive care units.MethodsThe study was conducted through a survey. It was intended for all intensivists: certified specialists and residents. The content of the questionnaire was guided by literature review and latest Clinical Practice Guidelines.ResultsThis study involved 105 physicians. Concerning the nutritional status screening: the clinical history and disease related effects were considered by 70% of physicians and weight changes were considered in 60%. Screening a recent and unintentional weight loss before hospital or ICU admission was done by 90% of intensivists. While only 45% screened the reduced dietary intake. Physical signs of malnutrition (loss of subcutaneous fat or muscle mass, oedema, ascite) were assessed by 52% of respondents. Using scores to evaluate the risk of malnutrition was considered by 26% of physicians. Weight evaluation based on actual body weight and BMI calculation were practiced by 59% of respondents. In order to evaluate the energy expenditure, indirect calorimetry (IC) was performed in 20% and predictive equations were used in 27%. Only 7% of respondents used VO2/VCO2 (VO2 (oxygen consumption) from pulmonary arterial catheter or VCO2 (carbon dioxide production) derived from the ventilator) measurement method. Over the half of the respondents (54%) had fixed a caloric target of 20 to 25 Kcal/day. Whereas, 16% of respondents reported that they did not consider the correct optimal calorie target. Albumin was prescribed by the majority of respondents (99%) to assess the nutritional state. Other biochemical parameters as Prealbumin and Transferrin were only known and prescribed in 8% and 7% respectively.ConclusionResults have shown that physicians responded differently regarding nutritional evaluation and that they were globally not sensibilized by the importance of this step. We highlight the necessity of an appropriate nutrition screening and assessment that will set the basis of an effective nutritional management.     

Evaluating the outcomes of rural health policy

With the development of policies specifically relating to rural health and health care provision, it seems apposite to consider evaluating their outcomes. Although little has apparently been done that specifically studies policy or processes, much of rural health research implicitly 'measures' policy effects; for example, study of the effects of rural medical education. Given what is known about the policy-making process, rural health researchers should beware of thinking that policy outcome evaluation might be straightforward or that evidence produced from evaluation will seamlessly influence future or evolving policy. Nonetheless, as rural health research and policy mature, it is worth adopting some of the complex approaches to health policy outcome measurement and applying them to understand our field – to find out the extent that policy, and indeed our role and research, have effects on rural health and care provision. In this paper, we identify some of the quirks of policy and policy evaluation and provide examples.     

卫生应急管理模块化培训效果定性评价

目的 定性评价卫生应急管理模块化培训的效果,探索卫生应急管理人员适宜的培训模式.方法 通过管理人员过程记录及监控、培训前后问卷调查以及学员访谈座谈进行评价.结果 培训过程完整,组织管理到位,学员依从性好,学员普遍认为本次培训设计新颖,效果好,对自身的知识、技能、态度等方面产生了影响,可在时间安排、教师点评、案例设计方面进行改善.结论 本次培训提高了学员的知识、技能、态度,进而影响了学员的思维和行为,同时,为卫生应急管理培训提供了适宜的培训模式.