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

BackgroundThere 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.ObjectiveThis paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE.DesignA 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 sourcesEnglish‐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 extractedStudy 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.ResultsOverall, 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 ConclusionsEfforts 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.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/113737/1/hex12090.pd

African-American and Latino Parents’ Attitudes and Beliefs Regarding Adolescent Fighting and Its Prevention

Adolescent fighting affects 25% of youth, with the highest rates among African-Americans and Latinos but little is known about parental views on youth fighting. The purpose of this study was to examine African-American and Latino parents’ perspectives on adolescent fighting and methods to prevent fighting. We conducted four focus groups with parents of African-American and Latino urban adolescents. Focus groups were stratified by race/ethnicity and fighting status. Groups were audiotaped, transcribed, and analyzed by three independent coders using thematic content analysis. Seventy-six percent of the 17 participants were female. Latino parents condoned fighting only as a last resort, and taught children about consequences of fighting, emotional regulation, and non-violent conflict-resolution strategies. African-American parents endorsed teaching non-violent strategies, but expressed some doubts about their effectiveness. African-American parents also suggested corporal punishment, but acknowledged that this may not be an optimal long-term strategy. Positive role modeling and involvement by teachers and other adults were cited as having important roles in fighting prevention. Suggested interventions included teaching adolescents non-violent conflict-resolution skills, anger management, and alternatives to fighting. Parents recommended that violence prevention programs incorporate the experiences of former fighters and be tailored to community needs. Study findings suggest that youth violence-prevention programs may benefit from addressing parental attitudes towards fighting and parent-child communication about fighting, teaching adolescents non-violent conflict-resolution skills, and tailoring programs by race/ethnicity. Promoting positive modeling and involvement by teachers and other adults also may be beneficial