The complexity of many urban health problems often makes them ill suited to traditional research approaches and interventions. The resultant frustration, together with community calls for genuine partnership in the research process, has highlighted the importance of an alternative paradigm. Community-based participatory research (CBPR) is presented as a promising collaborative approach that combines systematic inquiry, participation, and action to address urban health problems. Following a brief review of its basic tenets and historical roots, key ways in which CBPR adds value to urban health research are introduced and illustrated. Case study examples from diverse international settings are used to illustrate some of the difficult ethical challenges that may arise in the course of CBPR partnership approaches. The concepts of partnership synergy and cultural humility, together with protocols such as Green et al.’s guidelines for appraising CBPR projects, are highlighted as useful tools for urban health researchers seeking to apply this collaborative approach and to deal effectively with the difficult ethical challenges it can present.

Community-based research partnerships: challenges and opportunities.

Although community-based participatory research (CBPR) shares many of the core values of health education and related fields, the outside researcher embracing this approach to inquiry frequently is confronted with thorny ethical challenges. Following a brief review of the conceptual and historical roots of CBPR, Kelly’s ecological principles for community-based research and Jones’s three-tiered framework for understanding racism are introduced as useful frameworks for helping explore several key challenges. These are (a) achieving a true “community-driven” agenda; (b) insider-outsider tensions; (c) real and perceived racism; (d) the limitations of “participation”; and (e) issues involving the sharing, ownership, and use of findings for action. Case studies are used in an initial exploration of these topics. Green et al.’s guidelines for appraising CBPR projects then are highlighted as an important tool for helping CBPR partners better address the challenging ethical issues often inherent in this approach.

Ethical Challenges for the “Outside” Researcher in Community-Based Participatory Research

Background
There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.

Objective
This paper utilizes a systematic review and environmental scan to derive an evidence-based framework for PSUE.

Design
A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).

Eligible sources
English-language studies, commentaries, grey literature and other sources (including systematic and non-systematic reviews) pertaining to patient and public involvement in biomedical and health services research.

Data extracted
Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE-related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.

Results
Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two-part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re-assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.

Discussion and Conclusions
Efforts at developing a solid evidence base on PSUE are limited by the non-standard and non-empirical nature of much of the literature. Our proposed two-part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12090

Patient and service user engagement in research: a systematic review and synthesized framework

A much-discussed finding of the 1990 Census was the dramatic 44% increase over the preceding decade in the number of children living with grandparents or other relatives. Five percent of all American children were living with grandparents or other relatives by 1990, and in an estimated one third of these homes, neither parent was present (Saluter, 1992), often making the grandparent the sole or primary caregiver. Substance abuse, teen pregnancy, AIDS, incarceration, emotional problems, and parental death are among the factors that have been found to contribute to this phenomenon (Burton, 1992; Dressel & Barnhill, 1994; Feig, 1990; Jendrek, 1994; Joslin &

/pdf/a-profile-of-grandparents-raising-grandchildren-in-the-56fwcxm1jz.pdf

A Profile Of Grandparents Raising Grandchildren In The United States

Objectives. The purpose of this study was to examine the effects of caring for grandchildren on health behaviors and mental and physical health among older adults. Methods. Using a sample of 12,872 grandparents aged 50 through 80 from the Health and Retirement Study, we examined the relationship between stability and change in various types of grandchild care and subsequent health, controlling for covariates and earlier health. Results. We found no evidence to suggest that caring for grandchildren has dramatic and widespread negative effects on grandparents’ health and health behavior. We found limited evidence that grandmothers caring for grandchildren in skipped-generation households are more likely to experience negative changes in health behavior, depression, and selfrated health. We also found some evidence of benefits to grandmothers who babysit. Discussion. Our findings suggest that the health disadvantages found previously among grandparent caregivers arise from grandparents’ prior characteristics, not as a consequence of providing care. Health declines as a consequence of grandchild care appear to be the exception rather than the rule. These findings are important given continuing reliance on grandparents for day care and increasing reliance on grandparents for custodial care. However, the findings should be tempered by the recognition that for a minority of grandparents, coresidential grandchild care may compromise health.

http://www-news.uchicago.edu/releases/07/pdf/070530.grandparent.pdf

All in the Family: The Impact of Caring for Grandchildren on Grandparents' Health

OBJECTIVESApproximately 3.2 million children live with their grandparents or other relatives—a 40% increase in 10 years. This article presents selected findings from an exploratory study of the experience of 71 African-American women raising their grandchildren because of the crack epidemic.METHODST

Health of Grandmothers Raising Children of the Crack Cocaine Epidemic

This article presents a case study of the effective synergy of health education inquiry, community collaboration, and policy advocacy. Using the Grandparent Caregiver Study as the example, the authors focus on key methodological decisions that enabled them to incorporate research, education, and advocacy activities into an ever-growing project on a modest budget. The study itself centered on two in-depth interviews with each of 71 African American grandmothers raising young grandchildren due to the crack cocaine epidemic in Oakland, California. The case study demonstrates ways in which health education research can increase the efficacy of individuals and disenfranchised groups to define problems, voice their concerns, and advocate for more just and healthy public policies. Through discussion of the authors' methods and activities, they suggest strategies through which research participants, service providers, and policymakers can work together to bring a new issue to the policy arena through a collaborative and empowering research process.

Frances Fludd Saunders

Papers

Health of Grandmothers Raising Children of the Crack Cocaine Epidemic

Combining Research, Advocacy, and Education: The Methods of the Grandparent Caregiver Study