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Background The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network. Methods In this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. Results A total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM’s support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents’ experiences in partnering with them and how to improve engagement. Conclusions We highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners. Plain English summary In this paper, we add new insights into the complementary role of the Parent Peer Mentor (PPM) in promoting optimal patient engagement practices in a national patient-oriented research network. The PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. We analyzed the recorded interactions between the PPM and the network’s parent-partners of children with brain-based disabilities as well as an interview with the PPM. The PPM’s liaison role contributed to establishing reciprocal connections with parent-partners in a nation-wide research network. The perceived impacts at the individual level included: (1) parents felt more connected to the PPM and were comfortable sharing their experiences and emotions, and (2) researchers learned more about parents’ experiences in partnering with them and were able to address the issues raised such as adjustment of the meeting schedule and clarification of roles within the research team. At the Network level, adjustments were made based on feedback from the PPM to include structural adaptations to the compensation guidelines and use of lay language in our communications to patient-partners. Community-building and authentic partnerships were enhanced by the increased understanding of the experiences of patient-partners.

It is becoming more common for parents of children with chronic conditions to join research teams as partners. Parent partnerships can help align research with what is relevant and important to families. It is also common for parent partners to be asked to share information about a study through their personal networks, which supports study recruitment. In this parent-led study, we explored parents' experiences when working together with researchers in patient-oriented research studies, in relation to study recruitment. Demographic data were collected through a brief online survey (SurveyMonkey®) and analysed descriptively (n, %, median (interquartile range; IQR)). Qualitative data were collected through focus groups and interviews (July to October 2021), transcribed verbatim, and analysed thematically. Parent co-leads were involved in every stage of the study, including study design, recruitment, data collection, analysis, interpretation, and knowledge mobilization. Fifteen parents (n = 14 women) who had research partnership experience participated in this study. Most (n = 13) participants self-identified as White or of European descent. The majority (n = 10) had partnered in 1-3 research projects, while five participants had partnered in 4 + projects. Parents had a median of 3 years (IQR: 5) of partnership experience. We identified the following three themes: motivations, authentic partnerships, and learned decision making. Each theme included reflections about recruitment, and about research partnership in general. Motivations included a personal connection to the research topic, a connection to the community impacted by the research topic, and a desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participant's willingness and ability to share study materials. Learned decision making reflected parents' evolving decisions and practices related to sharing study information or personal information to support research. We provide a summary of participants' recommendations for researchers who work with parent partners, and recommendations for parents as they approach research partnerships. Experiences shared by parents who have partnered in research provide valuable information to inform recruitment methods and improve team functioning. Parent partners expressed a willingness to support recruitment and valued a strong research team working together for a common outcome. This study yields a set of recommendations guiding future research that engages parents as team members.

Background Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. Methods A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. Discussion This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

Caregivers of children with chronic conditions face daily challenges and a lower quality of life, which may be improved through peer support. This scoping review explored the literature on formal caregiver-to-caregiver mentorship programs, identifying strategies to inform future programs. Using Arskey and O’Malley’s framework, we searched five databases for peer-reviewed literature on caregiver-to-caregiver mentorship programs for adult caregivers caring for children (≤18 years) with chronic conditions. Thematic analysis was performed on relevant articles. Of the 10 064 search hits, 109 were included after full-text screening. Theme 1, “Mentorship adds to medical support”, reflected how mentorship can complement medical care provided by healthcare teams. Theme 2, “Successful mentorship requires the right mentors”, highlighted the qualities of mentors crucial for effective mentorship, mentor-matching practices, and training areas for mentors. Theme 3, “Mentorship programs should balance structure and flexibility”, emphasized the importance of allowing for flexibility to accommodate diverse family needs. Theme 4, “Mentorship programs face common challenges”, summarized the challenges frequently faced when implementing mentorship programs. The study findings suggest that the success of mentorship programs hinge on factors including a flexible program structure, knowledgeable and dedicated mentors, and an infrastructure in place for supporting both the mentors and the financial needs of the program.

Miller and Costello discuss a study by Udry, who claims to have established that sex dimorphic behavior is produced by prenatal exposure to varying levels of testosterone. Udry's work is part of a long scientific tradition--that of biological determinism, which seeks to anchor patterns of gendered behavior to immutable biological roots.

To be successful in their chosen careers, professional students must internalize appropriate professional identities. In studying this process, I have found that students who are female and/or of color encounter greater difficulties because they frequently suffer from a problem I term identity dissonance. I engaged in intensive ethnographic and interview-based research at a law school and school of social work. In this paper, I describe how identity dissonance was evident in gendered and raced differences in wardrobe alterations among the professional students I observed.

Costello reviews The Starting Gate: Birth Weight and Life Chances by Dalton Conley, Kate W. Strully, and Neil G. Bennett.