scholarly journals A randomised feasibility trial of an intervention to support sharing of HIV status for 18–25-year olds living with perinatally acquired HIV compared with standard care: HIV Empowering Adults’ Decisions to Share—UK/Uganda Project (HEADS-UP)

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Michael Evangeli ◽  
Caroline Foster ◽  
Victor Musiime ◽  
Sarah Fidler ◽  
Janet Seeley ◽  
...  
Keyword(s):  
Young Adults ◽  
Young People ◽  
Standard Of Care ◽  
Hiv Prevalence ◽  
Feasibility Trial ◽  
Hiv Status ◽  
Post Intervention ◽  
Perinatally Acquired ◽  
The Uk

Abstract Background Young adults with perinatally acquired HIV (PAH) face several challenges, including adhering to antiretroviral therapy (ART), managing the risk of onward HIV transmission and maintaining positive well-being. Sharing one’s HIV status with others (onward HIV disclosure) may assist with these challenges by facilitating emotional and practical support. Rates of HIV status sharing are, however, low in this population. There are no existing interventions focused on sharing one’s HIV status for young adults living with PAH. The HEADS-UP study is designed to develop and test the feasibility of an intervention to help the sharing of HIV status for young adults with PAH. Methods The study is a 30-month multi-site randomised feasibility study across both a high-income/low-HIV prevalence country (UK) and a low-income/high-HIV prevalence country (Uganda). Phase 1 (12 months) will involve developing the intervention using qualitative interviews with 20 young people living with PAH (ten in the UK—18 to 29 years; ten in Uganda—18 to 25 years), 20 of their social network (friends, family, sexual partners as defined by the young person; ten in the UK, ten in Uganda) and ten professionals with experience working with young adults with PAH (five in the UK, five in Uganda). Phase 2 (18 months) involves conducting a randomised feasibility parallel group trial of the intervention alongside current standard of care condition in each country (main study) with 18- to 25-year olds with PAH. A sample size of 94 participants per condition (intervention or standard of care; 188 participants in total: 47 in each condition in each country) with data at both the baseline and 6-month follow-up time points, across UK and Ugandan sites will be recruited. Participants in the intervention condition will also complete measures immediately post-intervention. Face-to-face interviews will be conducted with ten participants in both countries immediately post-intervention and at 6-month follow-up (sub-study). Discussion This study will be the first trial that we are aware of to address important gaps in understanding acceptable and feasible ways of delivering HIV status sharing support for young people living with PAH. Trial registration ISRCTN Registry, ISRCTN31852047, Registered on 21 January, 2019. Study sponsor: Royal Holloway University of London. Sponsor contact: [email protected]. Date and version: April 2020. Protocol version 3.5.

scholarly journals ‘We’re touching the topic, but we’re not opening the book:’ A grounded theory study of sibling relationships in young people with perinatally acquired HIV

2020 ◽  
pp. 135910532096227
Author(s):  
Hannah Deakin ◽  
Graham Frize ◽  
Caroline Foster ◽  
Michael Evangeli
Keyword(s):  
Young Adults ◽  
Grounded Theory ◽  
Young People ◽  
Sibling Relationships ◽  
Structured Interview ◽  
Sibling Relationship ◽  
Hiv Disclosure ◽  
Hiv Status ◽  
Patterns Of Communication ◽  
Perinatally Acquired

HIV-related stressors affecting young adults with perinatally acquired HIV (PHIV+) and their siblings include parental and sibling ill-health and death, own ill-health, HIV disclosure, and stigma. Young people with PHIV+ typically share their HIV status with family members. We explored sibling relationships in young people with PHIV+. Ten participants (six females, 17–23 years old) with PHIV+ took part in a semi-structured interview, analysed using Grounded Theory. The data were condensed into three theoretical codes: (1) HIV disclosure in sibling relationship; (2) Patterns of communication about HIV between siblings; and (3) Patterns of coping and support in sibling relationship.

scholarly journals Uncertainty and Fertility in a Generalized AIDS Epidemic

2011 ◽  
Vol 76 (6) ◽  
pp. 935-954 ◽  
Author(s):  
Jenny Trinitapoli ◽  
Sara Yeatman
Keyword(s):  
Decision Making ◽  
Young Adults ◽  
Young People ◽  
Hiv Prevalence ◽  
Hiv Status ◽  
Aids Epidemic ◽  
And Behaviors ◽  
Using Data ◽  
Insight Into

Sociologists widely acknowledge that uncertainty matters for decision making, but they rarely measure it directly. In this article, we demonstrate the importance of theorizing about, measuring, and analyzing uncertainty as experienced by individuals. We adapt a novel probabilistic solicitation technique to measure personal uncertainty about HIV status in a high HIV prevalence area of southern Malawi. Using data from 2,000 young adults (ages 15 to 25 years), we demonstrate that uncertainty about HIV status is widespread and that it expands as young adults assess their proximate and distant futures. In conceptualizing HIV status as something more than sero-status itself, we gain insight into how what individuals know they don’t know influences their lives. Young people who are uncertain about their HIV status express desires to accelerate their childbearing relative to their counterparts who are certain they are uninfected. Our approach and findings show that personal uncertainty is a measurable and meaningful phenomenon that can illuminate much about individuals’ aspirations and behaviors.

scholarly journals Treating sleep problems in young people at ultra-high-risk of psychosis: study protocol for a single-blind parallel group randomised controlled feasibility trial (SleepWell)

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e045235
Author(s):  
Felicity Waite ◽  
Thomas Kabir ◽  
Louise Johns ◽  
Jill Mollison ◽  
Apostolos Tsiachristas ◽  
...  
Keyword(s):  
Mental Health ◽  
High Risk ◽  
Young People ◽  
Sleep Problems ◽  
Qualitative Interviews ◽  
Feasibility Trial ◽  
Psychotic Experiences ◽  
Post Intervention ◽  
Ultra High Risk ◽  
Randomised Controlled

BackgroundEffective interventions, targeting key contributory causal factors, are needed to prevent the emergence of severe mental health problems in young people. Insomnia is a common clinical issue that is problematic in its own right but that also leads to the development and persistence of psychotic experiences. The implication is that treating sleep problems may prevent the onset of psychosis. We collected initial case series data with 12 young people at ultra-high-risk of psychosis. Post-intervention, there were improvements in sleep, depression and psychotic experiences. Now we test the feasibility of a randomised controlled trial, with a clinical aim to treat sleep problems and hence reduce depression, psychotic experiences, and prevent transition to psychosis.Methods and analysisA randomised controlled feasibility trial will be conducted. Forty patients aged 14 to 25 years who are at ultra-high-risk of psychosis and have sleep disturbance will be recruited from National Health Service (NHS) mental health services. Participants will be randomised to receive either a novel, targeted, youth-focussed sleep intervention in addition to usual care or usual care alone. Assessor-blinded assessments will be conducted at baseline, 3 months (post-intervention) and 9 months (follow-up). The eight-session psychological intervention will target the key mechanisms which disrupt sleep: circadian rhythm irregularities, low sleep pressure, and hyperarousal. To gain an in-depth understanding of participants’ views on the acceptability of the intervention and study procedures, 16 participants (n=10 intervention, n=6 control) will take part in qualitative interviews. Analyses will focus on feasibility outcomes (recruitment, retention, and treatment uptake rates) and provide initial CI estimates of intervention effects. Thematic analysis of the qualitative interviews will assess the acceptability of the intervention and trial procedures.Ethics and disseminationThe trial has received ethical approval from the NHS Health Research Authority. Findings will be disseminated through peer-reviewed publications, conference presentations, and lay networks.Trial registration numberISRCTN85601537.

Psychotic disorders in young adults with perinatally acquired HIV: a UK case series

2020 ◽  
pp. 1-7
Author(s):  
I. Mallik ◽  
T. Pasvol ◽  
G. Frize ◽  
S. Ayres ◽  
A. Barrera ◽  
...  
Keyword(s):  
Mental Health ◽  
Young Adults ◽  
Young People ◽  
Case Series ◽  
Psychotic Episode ◽  
Published Data ◽  
Growing Up ◽  
Term Care ◽  
Perinatally Acquired

Abstract Background Increasing numbers of children with perinatally acquired HIV (PaHIV) are transitioning into adult care. People living with behaviourally acquired HIV are known to be at more risk of psychosis than uninfected peers. Young adults living with PaHIV face numerous risk factors; biological: lifelong exposure to a neurotrophic virus, antiretroviral medication and immune dysfunction during brain development, and environmental; social deprivation, ethnicity-related discrimination, and migration-related issues. To date, there is little published data on the prevalence of psychotic illness in young people growing up with PaHIV. Methods We conducted a retrospective case note review of all individuals with PaHIV aged over 18 years registered for follow up at a dedicated clinic in the UK (n = 184). Results In total, 12/184 (6.5%), median age 23 years (interquartile range 21–26), had experienced at least one psychotic episode. The presentation and course of the psychotic episodes experienced by our cohort varied from short-lived symptoms to long term illness and nine (75%) appear to have developed a severe and enduring mental illness requiring long term care. Conclusion The prevalence of psychosis in our cohort was clearly above the lifetime prevalence of psychosis in UK individuals aged 16–34 years, which has been reported to be 0.5–1.0%. This highlights the importance of clinical vigilance regarding the mental health of young people growing up with PaHIV and the need to integrate direct access to mental health services within the HIV centres providing medical care.

PP24 Time: take-home naloxone in multicentre emergency settings: protocol for a feasibility study

2019 ◽  
Vol 36 (1) ◽  
pp. e10.1-e10
Author(s):  
Matthew Jones ◽  
Helen Snooks ◽  
Jenna Bulger ◽  
Alan Watkins ◽  
Chris Moore ◽  
...  
Keyword(s):  
Feasibility Study ◽  
Linked Data ◽  
Cost Effective ◽  
Feasibility Trial ◽  
Adverse Event Rate ◽  
Opioid Overdose ◽  
Opioid Agonist ◽  
Data Matching ◽  
The Uk

BackgroundOpioids such as heroin kill more people worldwide than any other drug. Death rates associated with opioid poisoning in the UK are at record levels. Naloxone is an opioid agonist which can be distributed in take home ‘kits’. This intervention is known as Take Home Naloxone (THN).MethodsWe propose to carry out a randomised controlled feasibility trial (RCT) of THN distributed in emergency settings clustered by Emergency Department (ED) catchment area, and local ambulance service; with anonymised linked data outcomes. This will include distribution of THN by paramedics and ED staff to patients at risk of opioid overdose. Existing linked data will be used to develop a discriminant function to retrospectively identify people at high risk of overdose death based on observable predictors of overdose to include in outcome follow up.ResultsWe will gather outcomes up to one year including; deaths (and drug related); emergency admissions; intensive care admissions; ED attendances (and overdose related); 999 attendances (and for overdose); THN kits issued; and NHS resource usage. We will agree progression criteria following consultation with research team members related to sign up of sites; successful identification and provision of THN to eligible participants; successful follow up of eligible participants and opioid decedents; adverse event rate; successful data matching and data linkage; and retrieval of outcomes within three months of projected timeline.ConclusionsTHN programmes are currently run by some drug services in the UK. However, saturation is low. There has been a lack of experimental research in to THN, and so questions remain: Does THN reduce deaths? Are there unforeseen harms associated with THN? Is THN cost effective? This feasibility study will establish whether a fully powered cluster RCT can be used to answer these questions.

scholarly journals HIV prevalence and determinants of loss-to-follow-up in adolescents and young adults with tuberculosis in Cape Town

PLoS ONE ◽  
2019 ◽  
Vol 14 (2) ◽  
pp. e0210937 ◽  
Author(s):  
Pancho Mulongeni ◽  
Sabine Hermans ◽  
Judy Caldwell ◽  
Linda-Gail Bekker ◽  
Robin Wood ◽  
...  
Keyword(s):  
Young Adults ◽  
Cape Town ◽  
Hiv Prevalence ◽  
Adolescents And Young Adults ◽  
Loss To Follow Up

Role of employment-related inequalities in young adults’ life satisfaction: A comparative study in five European welfare state regimes

2019 ◽  
Vol 47 (3) ◽  
pp. 357-365 ◽  
Author(s):  
Mihaela Vancea ◽  
Jennifer Shore ◽  
Mireia Utzet
Keyword(s):  
Life Satisfaction ◽  
Young Adults ◽  
Czech Republic ◽  
Young People ◽  
Welfare State ◽  
Social Protection ◽  
Cross Sectional Survey ◽  
The Czech Republic ◽  
The Uk ◽  
Welfare State Regimes

Aims: There is evidence that young people are less satisfied with their lives when they are unemployed or working in precarious conditions. This study aims to shed light on how the life satisfaction of unemployed and precariously employed young people varies across welfare states with different labour market policies and levels of social protection. Methods: The analyses are based on representative cross-sectional survey data from five European countries (Denmark, the UK, Germany, Spain and the Czech Republic), corresponding to five different welfare state regimes. For economically active young adults ( N=6681), the prevalence ratios of low life satisfaction were estimated through multivariate logistic regressions. Results: In all five countries, unemployed young adults presented a higher prevalence of low life satisfaction. When we compared employees with people with permanent and temporary contracts, the former were more satisfied with their lives only in Germany and the UK, examples of conservative and liberal welfare regimes, respectively. Experience of unemployment decreased young adults’ life satisfaction only in Germany and the Czech Republic, examples of a conservative and an eastern European welfare regime, respectively. In almost all countries, young adults with low economic self-sufficiency presented a higher prevalence of low life satisfaction. Conclusions: There are nuanced patterns of employment type and life satisfaction across European states that hint at welfare state regimes as possible moderators in this relationship. The results suggest that the psychological burdens of unemployment or work uncertainty cannot be overlooked and should be addressed according to different types of social provisions.

Online-Streamed Yoga As a Non-Pharmacologic Symptom Management Approach in Myeloproliferative Neoplasms

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5478-5478 ◽  
Author(s):  
Jennifer Huberty ◽  
Ryan Eckert ◽  
Krisstina L. Gowin ◽  
Brenda Ginos ◽  
Heidi E. Kosiorek ◽  
...  
Keyword(s):  
Research Funding ◽  
Myeloproliferative Neoplasms ◽  
Symptom Burden ◽  
Self Report ◽  
Feasibility Trial ◽  
Post Intervention ◽  
Yoga Intervention ◽  
Home Based ◽  
Anxiety Depression

Abstract Introduction: Polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) are Philadelphia-negative myeloproliferative neoplasms (MPNs) leading to risk of vascular events, splenomegaly and cytopenias in advanced disease as well as disease-originating symptoms, including (but not limited to) fatigue, depressive symptoms, insomnia, inactivity, sexual problems, and pruritis. Current therapy with JAK inhibition has improved MPN symptom burden, yet even in responders, unmet needs remain for alleviating fatigue, mood related symptoms, and insomnia. Yoga used as non-pharmacologic therapy has been shown to be efficacious for improving anxiety, depression, sleep quality, and fatigue in other cancer populations, including hematological malignancies. Due to a lack of this type of research in MPN patients, we undertook the first yoga study in this population as a feasibility trial (i.e., acceptability, demand, practicality) of home-based, online-streamed yoga for improving MPN patient symptom burden. Methods: MPN patients were recruited nationally using social media. Participants were asked to complete 60 minutes of online-streamed yoga weekly for 12 weeks. The yoga video selection included MPN-specific videos as well as others chosen specifically with potential splenomegaly in mind. Additionally, participants were asked to complete online self-report surveys administered via Qualtrics. Survey measures included demographics, total symptom burden and fatigue (MPN Symptom Assessment Form [MPN SAF]) as well as NIH PROMIS measures of pain, anxiety, depression, sleep, and sexual function. Surveys were administered at baseline (week 0), mid-point (week 7), post-intervention (week 12), and follow-up (week 16). Weekly yoga minutes were collected through online self-report. Results:Patients: Two hundred and forty-four MPN patients completed the eligibility survey, 134 were eligible, 55 completed the informed consent, and 38 MPN patients completed the 12-week intervention. The majority of participants were diagnosed with either PV (n=16) or ET (n=16), with MF being less common (n=6). Additionally, the majority of participants were female (n=34), Caucasian (n=37), married (n=30) of a normal BMI category (n=26), and had attained a Bachelor's degree or higher (n=25). Median age of those participating was 56 years (range 29-72). Yoga Participation & Safety:Approximately 37% (n=14) of study participants averaged ≥60 min/week of yoga. Yoga participation averaged 50.8±36.2 min/week. Additionally, 75% of participants felt safe from injury while participating in online yoga. Only one adverse event was reported (irritated enlarged spleen). Feasibility:Overall, 68% of participants were either satisfied or very satisfied with online yoga and 75% felt that is was helpful for coping with MPN-related symptoms (i.e., acceptability, practicality). However, only 43% of participants reported that they were likely or very likely to continue their online yoga practice (i.e., demand). Impact of Yoga Intervention: From baseline (week 0) to post-intervention (week 12, n=30), there were significant improvements in total symptom burden (effect size [ES] in standard deviation units=-0.36, p=0.004), anxiety (ES=-0.67, p=0.002), depression (ES=-0.41, p=0.049), sleep (ES=-0.58, p<0.001), and fatigue (ES=-0.33, p=0.04). These improvements remained significant at follow-up (week 16, n=28) for all outcome measures with a trend for maintained fatigue improvement (ES=-0.34, p=0.06). There were no significant differences in outcomes between those that averaged <60 min/week of yoga compared to those that averaged ≥60 min/week of yoga. Conclusions: A 12-week, home-based, online-streamed yoga intervention is feasible (i.e., accepted, practical) for MPN patients. Although the sample size was small and there was no control group, the results suggest that online yoga may be effective for improving MPN symptom burden, with statistically significant improvements observed in total symptom burden, fatigue, anxiety, depression, and sleep. A randomized, controlled trial is warranted to evaluate home-based, online-streamed yoga on MPN patient outcomes. If effective, yoga may represent a unique non-pharmacologic complement to standard therapies in a population with a heterogeneous symptom profile and significant symptom burden. Disclosures Gowin: Incyte: Membership on an entity's Board of Directors or advisory committees. Mesa:Ariad: Consultancy; Galena: Consultancy; Incyte: Research Funding; Gilead: Research Funding; Novartis: Consultancy; Promedior: Research Funding; CTI Biopharma: Research Funding; Celgene: Research Funding.

Chaplaincy as a Reframing and Expansion of Youth Ministry – Initiating and Developing an Occupational Standards Ecumenical Project in the UK for Chaplaincy with Ages 5–25

2020 ◽  
Vol 19 (2) ◽  
pp. 124-138
Author(s):  
Sally Nash ◽  
Paul Nash ◽  
Nigel Roberts
Keyword(s):  
Young Adults ◽  
Young People ◽  
Common Core ◽  
Youth Ministry ◽  
Children And Young People ◽  
Training Development ◽  
Occupational Standards ◽  
The Uk

Abstract Sometimes churches and Christian groups encounter scepticism or even hostility when they seek to engage with children, young people or young adults (cypya) within their community and have sought models and approaches that would be both accepted and understood. Chaplaincy is one way that some have sought to reframe mission and ministry. Chaplaincy is a distinctive ministry with a long history across many sectors but with no common core understanding. The Centre for Chaplaincy with Children and Young People embarked on a project to develop occupational standards for chaplaincy with cypya through convening a group consisting of chaplaincy leaders from denominations and organizations. The reason for developing occupational standards is to address issues of definition, credibility, measurement, accountability, training, development and audit framework. This article describes the process, underpinning values and theology and presents the twelve standards.

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