Benefits, barriers and recommendations for youth engagement in health research: combining evidence-based and youth perspectives.

BACKGROUND: Youth engagement refers to the collaboration between researchers and youth to produce research. Youth engagement in health research has been shown to inform effective interventions aimed at improving health outcomes. However, limited evidence has identified promising practices to meaningfully engage youth. This synthesis aims to describe youth engagement approaches, frameworks, and barriers, as well as provide both evidence-based and youth-generated recommendations for meaningful engagement. MAIN BODY: This review occurred in two stages: 1) a narrative review of existing literature on youth engagement and 2) a Youth Advisory Council (YAC) to review and supplement findings with their perspectives, experiences, and recommendations. The terms 'youth engagement' and 'health research' were searched in Google Scholar, PubMed, Web of Science, Scopus, and PsycINFO. Articles and non-peer reviewed research works related to youth engagement in health research were included, reviewed, and summarized. The YAC met with research team members and in separate youth-only forums to complement the narrative review with their perspectives. Types of youth engagement include participation as research participants, advisors, partners, and co-investigators. Barriers to youth engagement were organized into youth- (e.g., time commitments), researcher- (e.g., attitudes towards youth engagement), organizational- (e.g., inadequate infrastructure to support youth engagement), and system-level (e.g., systemic discrimination and exclusion from research). To enhance youth engagement, recommendations focus on preparing and supporting youth by offering flexible communication approaches, mentorship opportunities, diverse and inclusive recruitment, and ensuring youth understand the commitment and benefits involved. CONCLUSIONS: To harness the potential of youth engagement, researchers need to establish an inclusive and enabling environment that fosters collaboration, trust, and valuable contributions from youth. Future research endeavors should prioritize investigating the dynamics of power-sharing between researchers and youth, assessing the impact of youth engagement on young participants, and youth-specific evaluation frameworks.

Engaging and partnering with youth in research related to healthcare is important, but often not done well. As researchers, we recognize that youth perspectives are needed to make sure we are asking the right questions, using appropriate research methods, and interpreting the results correctly. We searched the literature to identify challenges researchers have faced engaging youth in health research, as well as strategies to partner with youth in a meaningful way. We worked closely with 11 youth from across Canada with experience in healthcare, who formed a Youth Advisory Council. The youth advisors reviewed the literature we found and discussed how it fit with their own experiences and perspectives through group meetings with the research team. Youth advisors divided into four groups to co-author parts of this paper, including identifying the importance, benefits, and challenges of engaging in research and providing reflections on their positive and negative previous experiences as youth advisors. This paper provides an overview of recommendations for researchers to engage with youth in a meaningful way, including how they communicate and meet with youth, recognize their contributions, and implement feedback to improve the experiences of youth partners.

The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa.

Female genital schistosomiasis (FGS) and male genital schistosomiasis (MGS) are gender-specific manifestations of urogenital schistosomiasis. Morbidity is a consequence of prolonged inflammation in the human genital tract caused by the entrapped eggs of the waterborne parasite, Schistosoma (S.) haematobium. Both diseases affect the sexual and reproductive health (SRH) of millions of people globally, especially in sub-Sahara Africa (SSA). Awareness and knowledge of these diseases is largely absent among affected communities and healthcare workers in endemic countries. Accurate burden of FGS and MGS disease estimates, single and combined, are absent, mostly due to the absence of standardized methods for individual or population-based screening and diagnosis. In addition, there are disparities in country-specific FGS and MGS knowledge, research and implementation approaches, and diagnosis and treatment. There are currently no WHO guidelines to inform practice. The BILGENSA (Genital Bilharzia in Southern Africa) Research Network aimed to create a collaborative multidisciplinary network to advance clinical research of FGS and MGS across Southern African endemic countries. The workshop was held in Lusaka, Zambia over two days in November 2022. Over 150 researchers and stakeholders from different schistosomiasis endemic settings attended. Attendees identified challenges and research priorities around FGS and MGS from their respective countries. Key research themes identified across settings included: 1) To increase the knowledge about the local burden of FGS and MGS; 2) To raise awareness among local communities and healthcare workers; 3) To develop effective and scalable guidelines for disease diagnosis and management; 4) To understand the effect of treatment interventions on disease progression, and 5) To integrate FGS and MGS within other existing sexual and reproductive health (SRH) services. In its first meeting, the BILGENSA Network set forth a common research agenda across S. haematobium endemic countries for the control of FGS and MGS.

"If I chose to listen to people, I possibly wouldn't be using family planning": Impact of external influences on women's contraceptive autonomy in rural Northwest Tanzania.

BACKGROUND: There is an increasing emphasis on promoting women's autonomy in reproductive decision-making, particularly given global efforts to increase contraceptive access and uptake. Scales to quantify autonomy have inconsistently included the effect of external influences and focused primarily on influences of partners. OBJECTIVES: This study aimed to gain greater depth in understanding how influences including and beyond a woman's partner affect her contraceptive decision-making, as well as how external influences can overlap and further complicate contraceptive decision-making. DESIGN: A phenomenological, qualitative study in which in-depth interviews were conducted in three phases from May 2021 to February 2022 with women living in northwest Tanzania who had varying histories of contraceptive use or non-use. METHODS: One-on-one, in-depth interviews were conducted in Swahili, the national language of Tanzania, by trained female interviewers. Interviews were digitally recorded, transcribed, translated into English, and independently coded by three investigators. Analysis was conducted using NVivo. The codes developed from the transcripts were grouped into overarching themes with supporting illustrative quotes. RESULTS: A total of 72 women were interviewed. Partners were the most influential in women's family planning decision-making, followed by friends, relatives, community religious leaders, and healthcare providers. Out of the 52 women with a partner who had ever used family planning, 76.9% had discussed their desire to use family planning with their partner and nearly all reported strong pressures to use or not to use family planning from partners, family, and friends. Rarely, participants stated that they were devoid of any influence. CONCLUSION: In rural Tanzania, women's decision-making about family planning was highly impacted by external influences, including not only partners but also family, friends, and community. Indicators of women's reproductive autonomy and measurements of interventions to promote contraceptive use should incorporate measures of these external influences.

Biological sex influences the contribution of sign-tracking and anxiety-like behavior toward remifentanil self-administration.

Most people sample addictive drugs, but use becomes disordered in only a small minority. Two important factors that influence susceptibility to addiction are individual differences in personality traits and biological sex. The influence of traits on addiction-like behavior is well-characterized in preclinical models of cocaine self-administration, but less is understood in regards to opioids. How biological sex influences trait susceptibility to opioid self-administration is likewise less studied than psychostimulants. Thus, we sought to elucidate how biological sex and several addiction-relevant traits interact with the propensity to self-administer the opioid remifentanil. We first screened female (n = 19) and male (n = 19) rats for four addiction-relevant traits: impulsivity, novelty place-preference, anxiety-like behavior, and attribution of incentive value to reward cues. Rats were then trained to self-administer remifentanil in a "conflict model" of drug self-administration. Rats had to endure an electric shock to access the response manipulandum that triggered an intravenous infusion of remifentanil. In male rats, high anxiety-like behavior was positively correlated with the number of drug infusions if the shock level was low or completely absent. In females, sign-tracking was predictive of greater resistance to punishment during drug seeking; an effect that was mediated by anxiety-like behavior. Females consumed more remifentanil under all conditions, and their drug seeking persisted in the face of significantly greater current than males. These findings demonstrate that the influence of behavioral traits over the propensity to self-administer opioids is dependent upon biological sex. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Correction: "We know about schistosomiasis but we know nothing about FGS": A qualitative assessment of knowledge gaps about female genital schistosomiasis among communities living in Schistosoma haematobium endemic districts of Zanzibar and Northwestern Tanzania.

[This corrects the article DOI: 10.1371/journal.pntd.0009789.].

Healthcare Workers' Low Knowledge of Female Genital Schistosomiasis and Proposed Interventions to Prevent, Control, and Manage the Disease in Zanzibar.

Objectives: This study was conducted to explore healthcare workers' knowledge of female genital schistosomiasis (FGS) and describe proposed interventions to raise awareness about FGS and strengthen healthcare facilities' capacity to manage FGS cases. Methods: We conducted four cross-sectional focus group discussions and 16 key informant interviews with purposively selected healthcare workers in Zanzibar. Discussions and interviews were digitally recorded, transcribed, and analyzed using NVivo software. Results: Most participants had limited or no knowledge of FGS and lacked skills for managing it. They confused FGS with urogenital schistosomiasis and thought it was sexually transmitted. A few participants knew about FGS and associated it with Human Immunodeficiency Virus (HIV), ectopic pregnancy, cervical cancer, and infertility. To prevent and control FGS, participants proposed interventions targeting communities (including community-based health education) and the healthcare system (including training healthcare workers on FGS). Conclusion: Healthcare workers lacked knowledge of and skills for managing FGS. Besides, healthcare facilities had no diagnostic capacity to manage FGS. Along with on-going interventions to break S. haematobium transmission and eventually eliminate urogenital schistosomiasis in Zanzibar, we recommend training healthcare workers on FGS and equip healthcare facilities with medical equipment and supplies for managing FGS.

"Female genital schistosomiasis is a sexually transmitted disease": Gaps in healthcare workers' knowledge about female genital schistosomiasis in Tanzania.

Female Genital Schistosomiasis is a gynecological disease that is a complication of parasitic Schistosoma haematobium infection and affects at least 40 million girls and women, mostly in sub-Saharan Africa. Little is known about how healthcare workers in endemic areas perceive and manage (diagnose and treat) Female Genital Schistosomiasis. We conducted cross-sectional focus group discussions and key informant interviews among healthcare workers in northwestern Tanzania. Healthcare workers, particularly those working in areas where S. haematobium is highly endemic, were purposively sampled to participate in the study. Discussions and interviews were digitally recorded, transcribed, and analyzed using NVivo version 12. Most healthcare workers lacked knowledge and skills to manage Female Genital Schistosomiasis. They also had multiple misconceptions about its aetiology, modes of transmission, symptoms, and management. Healthcare workers did not consider Female Genital Schistosomiasis in differential diagnoses of women presenting with gynecologic symptoms except sometimes in patients who did not respond to the initial therapy for sexually transmitted infections. Healthcare facilities had limited capacity to manage Female Genital Schistosomiasis. Our findings show critical gaps in both the knowledge of healthcare workers to manage Female Genital Schistosomiasis and in the capacity of healthcare facilities to manage it. To fill these gaps, two urgent needs must be fulfilled: first, training healthcare workers (particularly those working in schistosomiasis-endemic settings) on Female Genital Schistosomiasis, and second, stocking healthcare facilities with necessary medical equipment and supplies for managing this disease.

"We know about schistosomiasis but we know nothing about FGS": A qualitative assessment of knowledge gaps about female genital schistosomiasis among communities living in Schistosoma haematobium endemic districts of Zanzibar and Northwestern Tanzania.

BACKGROUND: Schistosoma haematobium causes urogenital schistosomiasis and is widely distributed in Tanzania. In girls and women, the parasite can cause Female Genital Schistosomiasis (FGS), a gynecological manifestation of schistosomiasis that is highly neglected and overlooked by public health professionals and policy makers. This study explored community members' knowledge, attitudes and perceptions (KAP) on and health seeking behavior for FGS. METHODS/PRINCIPAL FINDINGS: Using qualitative research methods-including 40 Focus Group Discussions (FGDs) and 37 Key Informant Interviews (KIIs)-we collected data from 414 participants (Males n = 204 [49.3%] and Females n = 210 [50.7%]). The study engaged 153 participants from Zanzibar and 261 participants from northwestern Tanzania and was conducted in twelve (12) purposively selected districts (7 districts in Zanzibar and 5 districts in northwestern Tanzania). Most participants were aware of urogenital schistosomiasis. Children were reported as the most affected group and blood in urine was noted as a common symptom especially in boys. Adults were also noted as a risk group due to their involvement in activities like paddy farming that expose them to infection. Most participants lacked knowledge of FGS and acknowledged having no knowledge that urogenital schistosomiasis can affect the female reproductive system. A number of misconceptions on the symptoms of FGS and how it is transmitted were noted. Adolescent girls and women presenting with FGS related symptoms were reported to be stigmatized, perceived as having a sexually transmitted infection (STI), and sometimes labeled as "prostitutes". Health seeking behavior for FGS included a combination of traditional medicine, self-treatment and modern medicine. CONCLUSION/SIGNIFICANCE: Community members living in two very different areas of Tanzania exhibited major, similar gaps in knowledge about FGS. Our data illustrate a critical need for the national control program to integrate public health education about FGS during the implementation of school- and community-based mass drug administration (MDA) programs and the improvement of water, sanitation and hygiene (WASH) facilities.

Early life adversity potentiates expression of addiction-related traits.

Many individuals sporadically and circumstantially sample addictive drugs, yet few become addicted. The individual vulnerabilities underlying the development of addiction are not well understood. Correlational findings show that early life adversity is associated with a greater propensity to develop drug addiction. However, the mechanisms by which early life adversity increases addiction vulnerability are unknown. Separate lines of research have found that several traits are associated with addiction. Here, we examined the effects of early life adversity on addiction-related traits in adulthood. We weaned male and female Sprague-Dawley rats (postnatal day - PND21) and randomly assigned them to either a non-adversity group (N-ADV) or an adversity group (ADV). ADV rats experienced adversity from PND 21-35, they were: a) singly housed, b) food restricted for 12h/day, c) subjected to forced-swim sessions, and d) restrained and exposed to predator odour (1h). As adults, rats were tested for impulsivity, anxiety-like behaviour, novelty preference, and attribution of incentive salience to a reward cue. ADV rats showed enhanced novelty preference and attributed greater incentive value to a reward cue. Compared to N-ADV rats, a greater proportion of ADV rats expressed multiple addiction risk traits. Furthermore, fewer ADV rats expressed no addiction risk traits. This effect was most evident in female ADV rats.