Conducting a Community "Street Survey" to Inform an Obesity Intervention: The WE Project.

Using a community-based participatory research approach, a citywide survey was conducted to explore perceptions of obesity and interventions to reduce obesity within an African American urban community. More than 1300 surveys were collected within 3 months; 92.9% of respondents agreed or strongly agreed that obesity was an important health issue in the community and the majority indicated that family-based interventions were the preferred pathway for improving physical activity (86.0%) and nutrition (85.2%). Engaging community members in survey development and implementation was an effective approach to build local research capacity and establish a shared agenda of reaching a diverse sample of community residents.

Authorization of tissues from deceased patients for genetic research.

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.

Upward communication about cancer screening: adolescent daughter to mother.

Substantial breast and cervical cancer disparities exist in the United States, particularly among African American women with low socioeconomic status. There is considerable potential for discussions about cancer prevention between mothers and daughters. However, upward communication, from child to parent, remains a relatively novel research area, and it remains unclear how receptive mothers would be to messages from their daughter about cancer, a topic that may be considered culturally inappropriate for daughters to initiate. In this study, the authors simulated cancer message delivery to daughters and then conducted direct observation of daughters as they recalled and shared the message with their mother or female elder. The authors found that daughters were able to successfully recall and deliver a cancer appeal to their mother and mothers were generally receptive to this message. Not only did mothers listen to their daughters' appeals, but also daughters' knowledge of cancer was considerably improved by the opportunity to educate her female elder. Moreover, daughters' nonverbal communication suggested a surprisingly relaxed demeanor. The potential of young people to have an effect on the screening behavior of their female elders is very promising in terms of reducing cancer disparities.

Health promotion and cervical cancer in South Africa: why adolescent daughters can teach their mothers about early detection.

The notion that adolescent daughters can provide their mothers with health information that could actually impact the mothers' behavior is a novel area of health promotion research. The goal of this study is to explore the reasons why adolescent daughters would give their mothers cervical cancer information, and why mothers would have the intent to listen to advice to obtain a Pap smear. We randomly selected and interviewed 157 mother and daughter dyads in Cape Town, South Africa. Almost one-fourth of mothers (22%) indicated never having had a Pap smear, while 92% of their daughters said their mother has never talked to them about cervical cancer or a Pap smear. Willingness of daughters to ask their mothers to obtain a Pap smear was high (80%). Motivations included the important health benefit and the sense of responsibility to share life saving information. Most mothers said they would definitely obtain a Pap smear when advised by their daughter (74%), while 25% said they would have to think about it and 1% said they would not listen. Mothers' main motivations included the direct health benefit and a strong sense of duty and responsibility to listen to her daughter. This study provides important information about the reasons why an upward (child to parent) health intervention may be feasible. The values of duty and responsibility, especially as it manifests within the family, hold promise for informing health promotion interventions directed at multiple generations.

Needs of low-income african american cancer survivors: multifaceted and practical.

This study aimed to identify the needs of low-income, African American cancer survivors in an urban setting. Data were collected from semi-structured interviews conducted with cancer survivors (n = 12), caregivers (n = 10), professionals (n = 10), and surveys from town hall meetings (n = 80). The major needs identified, across all groups, included a diverse array of practical needs including transportation, financial and job assistance, childcare, self-care assistance, more education and lifestyle information when diagnosed as well as after diagnosis, better post treatment plan, and more need for social support. They identified the ideal resource center as being located within the survivor's neighborhood and would provide a range of medically specific support as well as recreational services. Being of limited economic means has a host of implications for those diagnosed with cancer and for their family members. Participants suggested that needs for cancer survivors have to take into account a complexity of factors including culture, family, and especially economic implications.

Community researchers conducting health disparities research: Ethical and other insights from fieldwork journaling.

Lay persons who are trained to conduct research in their own communities form an essential part of many research projects. However, the effects of conducting research in their own communities have not been adequately explored. This paper examines the experiences, perceptions, and challenges faced by a group of community researchers during their involvement in a research project that examined if, and how, the relationships between mothers and their adolescent daughters could be harnessed to develop a daughter-initiated cervical cancer intervention. Seven community researchers interviewed 157 mother-daughter pairs in Cape Town, South Africa. We examine the use of journaling as a tool to document the experiences of community researchers, and we consider how journaling may help the community-based researcher grapple with the research process, and, more broadly, what such journal content illustrates with respect to the nature and challenges of community-engaged health research. An analysis of the content of the journals provides a strong indication of how personal and intimate the research process can be for community researchers by virtue of the background that they bring into the process as well as the additional weight of the research process itself. The complexities of navigating dual and somewhat oppositional roles - the role of impartial scientist or researcher and the role of invested community person - has been both underestimated and insufficiently researched.

Getting personal: ethics and identity in global health research.

'Researcher identity' affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen's (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns.

Photovoice: a needs assessment of African American cancer survivors.

The goal of this research was to understand the barriers and challenges that African American cancer survivors experience after being diagnosed with cancer. The authors provided 20 cancer survivors and caregivers with cameras to take pictures of their needs right after they were diagnosed with cancer. Most importantly, a major theme that arose from the participants' responses was the lack of culturally-specific support services located within their neighborhoods. Other needs included lack of social support, a lack of resources related to appearance, a lack of resources for continued care, and especially a lack of support services for children of survivors.

Community members as recruiters of human subjects: ethical considerations.

Few studies have considered in detail the ethical issues surrounding research in which investigators ask community members to engage in research subject recruitment within their own communities. Peer-driven recruitment (PDR) and its variants are useful for accessing and including certain populations in research, but also have the potential to undermine the ethical and scientific integrity of community-based research. This paper examines the ethical implications of utilizing community members as recruiters of human subjects in the context of PDR, as well as the authors' experience with a variant of PDR in a research project in South Africa. The importance of situating PDR in a comprehensive community engagement process that is responsive to the constraints of science and local needs and interests is emphasized. The paper will have relevance to bioethicists, health researchers, and research regulators concerned about the appropriate use of peer-driven recruitment strategies in health research.

Exploratory Health Disparities Research: The Need to Provide a Tangible Benefit to Vulnerable Respondents.

This article examines the responsibilities of researchers who conduct exploratory research to provide a service to vulnerable respondents. The term "service" is used to denote the provision of a tangible benefit in relation to the research question that is apart from the altruistic research benefits. This article explores what this "service" could look like, who might be responsible for providing it, and the challenges associated with such a service. The article argues that not providing a tangible benefit to vulnerable research participants is inconsistent with the principle of social justice that undergirds much of the rationale for conducting health disparities research.

The mother-daughter relationship: what is its potential as a locus for health promotion?

In this article we examine the potential influence of adolescent girls on mothers' health-related knowledge and behaviors. Surveys were conducted with 131 mothers and 145 daughters to explore the extent of shared social activities between mothers and their adolescent daughters in a low-income South African community, and the degree to which mothers are receptive to advice from daughters. Eighty-six percent of daughters reported that their mothers had asked them for advice, and 93% of mothers indicated that they would listen to health advice from their daughters. This analysis suggests that the mother-daughter relationship may be a potential asset for culturally viable, community-based health promotion.

Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question.

Community engagement is an on-going, arduous, and necessary process for developing effective health promotion programs. The challenges are amplified when the particular health issue or research question is not prominent in the consciousness of the targeted community. In this paper, we explore the community-based participatory research (CBPR) model as a means to negotiate a mutual agenda between communities and researchers. The paper is focused on the (perceived) need for cervical cancer screening in an under-resourced community in Cape Town, South Africa. Cervical cancer is a significant health problem in this community and elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South Africans have not been educated about cervical cancer and the importance of obtaining screening. Many may not consider screening a priority in their lives. Our research included extensive consultations and informal interviews with diverse community and regional stakeholders. Following these, we conducted 27 focus groups and 106 demographic surveys with randomly selected youth, parents, local health care personnel, educators and school staff. Focus group data were summarized and analyzed cross-sectionally. Community stakeholders were involved throughout this research. Our consultations, interviews, and focus group data were key in identifying the concerns and priorities of the community. By engaging community stakeholders, we developed a research framework that incorporated the community's concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members' health and wellbeing. Community members helped to refocus our research from cervical cancer to 'cervical health,' a concept that acknowledged the impact on women's bodies and lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple social problems. We conclude that the research agenda and questions in community-based health research should not be considered immutable. They need to be open to negotiation, creativity, and constant reinvention.