BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency (...) as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

IntroductionAdolescent connectedness, a key component of positive youth development, is associated with various positive health outcomes. Several measures have been developed to assess this construct. However, no study has summarized data on the existing measures of adolescent connectedness. We conducted this scoping review to fill this gap. We specifically aimed to: identify the existing measures of adolescent connectedness, determine the most frequently used measures among the identified measures, and summarize the psychometric properties of these measures with a keen interest in (...) highlighting their cross-cultural utility and validity.MethodsWe searched CINAHL, Embase, PsycInfo, PubMed, and Web of Science databases for relevant articles published since database inception to 7th February 2021. Our search structure contained the key words “Adolescents”, “Connectedness”, and “Measures”. We also searched Open Gray for potentially relevant gray literature.ResultsWe identified 335 measures from 960 eligible studies assessing various domains of adolescent connectedness, including school, family, community, peer, ethnic, racial, cultural, religious/spiritual, and self-connectedness. Most of the included studies were from North America and Europe. Most of the measures were measures of school connectedness among adolescents. Of the identified measures, 60 of them met our criteria of frequently used measures. These frequently used measures were used across 481 of the included studies with 400 of them reporting their psychometric properties. The reported reliability of these measures was adequate in 89.8% of these studies. These measures also appeared to be valid in terms of their face, content, construct, criterion, convergent, discriminant, concurrent, predictive, measurement invariance, and cross-cultural validity.ConclusionsThere exists a wide array of measures of adolescent connectedness. Sixty of these measures have been frequently used across studies and appear to be reliable and/or valid. However, this evidence is mostly from North America and Europe. This is a reflection of the limitation of this review where only studies published in English were considered. It might also reflect the paucity of research in other regions of the world. More research is needed for clearer insights. (shrink)