Psychological and Behavioural Within-participant Predictors of Adherence to Oral HIV Pre-Exposure Prophylaxis (PrEP).

Oral PrEP's effectiveness relies on adequate adherence during periods of substantial HIV risk. Since most PrEP users will miss doses, understanding predictors within participants can help to explain adherence. We used a cross-sectional, within-participant design with 67 gay, bisexual, and other men who have sex with men taking PrEP daily. Using a questionnaire, informed by the Information Motivation Behavioral Skills Model, participants were asked about an adherent and a non-adherent episode. PrEP non-adherence was associated with non-normality of the day (p < .001), being out of the home (p < .001), weekend days (p = .01), having company (p = .02), using substances (p = 0.02), not using reminders (p = .03), lower PrEP information (p = .04), lower behavioural skills (p < .001) and less positive affect (p = .002). PrEP adherence assessment could focus on situational variations, supporting the construction of alternative strategies to facilitate adherence in these situations.

Cultural Adaption, Translation, Preliminary Reliability and Validity of Key Psychological and Behavioural Measures for 18 to 25 Year-Olds Living with HIV in Uganda: A Multi-Stage Approach.

HIV remains a significant public health issue among young adults living in Uganda. There is a need for reliable and valid measures of key psychological and behavioural constructs that are related to important outcomes for this population. We translated, adapted and tested the psychometric properties of questionnaires measuring HIV stigma, HIV disclosure cognitions and affect, antiretroviral therapy (ART) adherence, social support, personal values, and hope, using a multi-step process. This included: translation, back-translation, expert review, cognitive interviewing, readability and assessments of internal consistency with 93 young adults (18-25 years) living with perinatally acquired HIV in Uganda. Preliminary criterion validity was assessed by examining relationships between the adapted measures and wellbeing, HIV disclosure behaviour, HIV disclosure intention and viral load suppression. The measures all showed acceptable reliability and every questionnaire apart from the Agentic and Communal Value Scale was easy to read. Those scales measuring HIV disclosure affect and cognitions, social support, HIV stigma and hope showed relationships with other constructs suggestive of validity. There is preliminary evidence to support the use of these measures in research and clinical contexts for young adults living with perinatally acquired HIV in Uganda.

The HIV Empowering Adults' Decisions to Share: UK/Uganda (HEADS-UP) Study-A Randomised Feasibility Trial of an HIV Disclosure Intervention for Young Adults with Perinatally Acquired HIV.

Young adults with perinatally acquired HIV (PAH) face numerous challenges, including antiretroviral therapy (ART) adherence, managing onward HIV transmission risks and maintaining wellbeing. Sharing one's HIV status with others (onward HIV disclosure) may assist with these challenges but this is difficult. We developed and tested the feasibility of an intervention to help HIV status sharing decision-making for young adults with PAH. The study used a randomised parallel group feasibility design with 18-25-year-olds in Uganda and 18-29 year-olds in the UK. Participants were randomly assigned to intervention or standard of care (SOC) condition. The intervention consisted of four sessions (3 group, 1 individual) with follow-up support, delivered in person in Uganda and remotely in the UK. Assessments were carried out at: Pre-intervention /baseline; Post-intervention (intervention group only); Six-month follow-up. 142 participants were recruited (94 Uganda, 48 UK; 89 female, 53 male). At six-month follow-up, 92/94 (98%) participants were retained in Uganda, 25/48 (52%) in the UK. Multivariate analysis of combined data from both countries, showed a non-significant effect of intervention condition on HIV disclosure cognitions and affect (p = 0.08) and HIV disclosure intention (p = 0.09). There was a significant intervention effect on well-being (p = 0.005). This study addressed important gaps in understanding acceptable and feasible ways of delivering HIV status sharing support for young people living with PAH across two very different settings. The intervention was acceptable in both countries and feasible in Uganda. In the UK, retention may have been affected by its remote delivery.Trial registration: ISRCTN Registry, ISRCTN31852047, Registered on 21 January 2019.

Priorities for HIV and chronic pain research: results from a survey of individuals with lived experience.

The Global Task Force on Chronic Pain in HIV published seven research priorities in the field of HIV-associated chronic pain in 2019: (1) causes; (2) management; (3) treatment individualization and integration with addiction treatment; (4) mental and social health factors; (5) prevalence; (6) treatment cost effectiveness; and (7) prevention. The current study used a web-based survey to determine whether the research topics were aligned with the priorities of adults with lived experiences of HIV and chronic pain. We also collected information about respondents' own pain and treatment experiences. We received 311 survey responses from mostly US-based respondents. Most respondents reported longstanding, moderate to severe, multisite pain, commonly accompanied by symptoms of anxiety and/or depression. The median number of pain treatments tried was 10 (IQR = 8, 13), with medications and exercise being the most common modalities, and opioids being viewed as the most helpful. Over 80% of respondents considered all research topics either "extremely important" or "very important". Research topic #2, which focused on optimizing management of pain in people with HIV, was accorded the greatest importance by respondents. These findings suggest good alignment between the priorities of researchers and US-based people with lived experience of HIV-associated chronic pain.

Slow and Steady But Not Related to HIV Stigma: Physical Activity in South Africans Living with HIV and Chronic Pain.

HIV stigma may influence physical activity in people living with HIV (PLWH) and chronic pain. We prospectively examined the relationship between stigma, activity and chronic pain in a convenience sample of PLWH initiating antiretroviral therapy in an inner-city clinic in Johannesburg, South Africa. Participants wore accelerometers to measure daily duration and intensity of activity for 2 weeks. Stigma was assessed with the Revised HIV Stigma Scale. Participants [n = 81, 89% female, age mean (SD) 42 (8)] were active for a median of 7 h daily (IQR 5.2, 9.2), but at very low intensity, equivalent to a slow walk [median (IQR): 0.39 m s-1 (0.33, 0.50)]. Duration and intensity of activity was not associated with stigma, even after controlling for age, self-assessed wealth, pain intensity and willingness to engage in physical activity (p-values > 0.05). As stigma did not associate with greater activity, drivers of sustained activity in South African PLWH remain unclear.

RESUMEN: El estigma del VIH puede influir en la actividad física de las personas que viven con el VIH (PVVS) y el dolor crónico. Se examinó prospectivamente la relación entre el estigma, la actividad y el dolor crónico en una muestra de conveniencia de PVVS que iniciaba la terapia antirretroviral en una clínica del centro de la ciudad en Johannesburgo, Sudáfrica. Los participantes usaron acelerómetros para medir la duración diaria y la intensidad de la actividad durante dos semanas. El estigma se evaluó con la escala revisada de estigma del VIH. Los participantes [n = 81, 89% mujeres, media de edad (SD) 42 (8)] tenían una actividad de intensidad muy baja, para una mediana de siete horas diarias (IQR 5.2, 9.2), pero, equivalente a una marcha lenta [mediana (IQR): 0.39 m s−1 (0.33, 0.50)]. La duración y la intensidad de la actividad no se asociaron con los niveles de estigma, incluso después de controlar la edad, la riqueza autoevaluada, la intensidad del dolor y la voluntad de participar en la actividad física (valores de p > 0.05). Como el estigma no se asoció con una mayor actividad, los impulsores de la actividad sostenida en las PVVS sudafricanas siguen sin estar claros.

Mechanisms of Motivational Interviewing for Antiretroviral Medication Adherence in People with HIV.

Antiretroviral therapy (ART) for HIV requires strict regimen adherence. Motivational interviewing (MI) can improve ART adherence. MI process studies have rarely focussed on ART adherence. Such studies may facilitate MI modifications to improve outcomes. This study employed a single group pre and post-test design with 62 adults with HIV (16 female; mean age 40 years). Therapist use of MI-consistent (MICO) methods, MI spirit, and client change and sustain talk were coded from an MI session. Relationships were assessed with ART schedule adherence. MICO methods positively correlated with change and sustain talk and were negatively associated with proportion of change talk. No variables were associated with ART adherence change. Mediation analysis did not support the MI model of change. This may be due to the fact that ART adherence is determined by both motivational and non-motivational factors. It may also be that bidirectional relationships exist between therapist and client speech.

What is the best way to share an HIV diagnosis with an intimate partner? An experimental study of assertive disclosure communication.

Living with HIV presents challenges to wellbeing and managing one's own and others' health. Sharing an HIV positive diagnosis can increase social support and antiretroviral adherence and reduce onward HIV transmission. However, HIV disclosure anxiety is common with concerns about partner responses. There is limited research on whether the way HIV is shared affects partners' responses. We assessed whether communication style influences hypothetical partner responses in intimate relationships. Two hundred and four participants (83% female; median age 20, IQR 19-23) were shown four vignettes (high assertion regular partner, low assertion regular partner, high assertion casual partner, low assertion casual partner). Participants responded as the intimate partner to questions addressing affective and cognitive reactions to HIV diagnosis sharing. Assertive compared to non-assertive communication led to intimate partner responses with lower negative affect, warmer feelings toward the character and greater intentions to provide support and to continue a sexual relationship. Participants responded with more global negative affect and shock, and greater intention to provide support and to continue a sexual relationship if the character was a regular compared to a causal partner. Future work could explore whether people with HIV should be assisted to share their diagnosis assertively for greater benefits.

A longitudinal evaluation of an intensive residential intervention (camp) for 12-16 year olds living with HIV in the UK: evidence of psychological change maintained at six month follow-up.

There are large numbers of young people with HIV globally, the majority of whom have perinatally acquired HIV (PAH). Despite evidence of lower levels of wellbeing in young people with PAH compared to HIV unaffected peers, there are few psychosocial interventions for this population. Residential interventions (camps) for young people with HIV have the potential for enhancing well-being and improving HIV-related outcomes. There have not been any quantitative evaluations of camps for young people with HIV. This study evaluated a week-long intensive residential intervention for 12-16 year olds living with HIV in the UK. A quantitative repeated measures design was used. Forty nine participants completed assessments before and immediately after the intervention (post-intervention) and at six month follow-up (73% retention rate; 28 (57%) female; median age 14 years, IQR 13-15 years). Self-report measures suggested improvements in both HIV knowledge and pro HIV disclosure affect and cognitions post-intervention, maintained at six month follow-up. There were improvements in antiretroviral adherence beliefs from baseline to six month follow-up, and in self-perception from baseline to post-intervention. These changes are important in their own right but may also be mediators of other outcomes such as increased ART adherence and reduced onward HIV transmission risk. The study suggests that brief residential interventions have the potential to facilitate sustained change in psychological outcomes. Research and practice implications are outlined.

Coding Client Language in Motivational Interviewing for HIV Medication Adherence Using Self-Determination Theory.

BACKGROUND: Both motivational interviewing (MI) and self-determination theory (SDT) emphasise the importance of an individual's autonomy. SDT proposes that motivation is on a continuum with autonomous motivation (AM) at the self-determined end of the spectrum. Whether client speech reflects AM is not coded in MI process studies, however, as it is subsumed under the broader category of change talk (CT). We aimed to code naturalistic speech within MI sessions for HIV medication (antiretroviral) adherence according to whether expressed motivation was autonomous or controlled. We then assessed relationships between adherence and both autonomous/controlled motivational speech (AM/CM) and CT. METHODS: We developed a new coding tool (the SDT coding system: SDTCS) to measure naturally occurring AM speech and CM speech expressed during an MI session targeting antiretroviral (ART) adherence with 62 adults living with HIV (16 female; mean age 40 years). We coded the same sessions using the motivational interviewing skills code (MISC) 2.5 and then examined relationships with on-time ART adherence. RESULTS: The SDTCS was developed using a combined inductive and deductive approach. Adequate reliability estimates were achieved and the measure possessed good content validity. Naturally occurring AM speech had a stronger relationship to ART adherence in the week after the MI session than CM speech. There was also some evidence that the relationship between AM speech and adherence was stronger than between CT and adherence. CONCLUSION: Future refinement and extension of the SDTCS could allow for a more nuanced understanding of client motivational speech that is currently provided by existing coding tools.

A systematic review of psychological correlates of HIV testing intention.

Undiagnosed HIV infection is associated with onward HIV transmission and delays in accessing HIV care and treatment. As a significant proportion of HIV tests are self-initiated, it is important to assess correlates of the intention to test for HIV. Psychological correlates of HIV testing intention are more likely to be the feasible target of interventions than structural determinants. A systematic review of psychological correlates of HIV testing intention was conducted. Twenty studies were included in the review, covering a range of populations and geographical regions. The most commonly assessed variables were HIV risk perception and HIV knowledge rather than HIV test-specific psychological factors. There was evidence that HIV risk perception and pro-testing attitudes were consistently associated with HIV testing intention across a number of studies. There is a need for longitudinal designs, including experimental studies, allowing for more confident casual inferences to be made. Theoretical, research and practice implications are outlined.

Anxiety and depression symptoms in young people with perinatally acquired HIV and HIV affected young people in England.

Adolescents with perinatal HIV (PHIV) may be at higher risk of anxiety and depression than HIV negative young people. We investigated prevalence of anxiety and depression symptoms in 283 PHIV and 96 HIV-affected (HIV-negative) young people in England recruited into the Adolescents and Adults Living with Perinatal HIV (AALPHI) cohort. We used Hospital Anxiety and Depression Scale (HADS) scores and linear regression investigated predictors of higher (worse) scores.115 (41%) and 29 (30%) PHIV and HIV-affected young people were male, median age was 16 [interquartile range 15,18] and 16 [14,18] years and 241 (85%) and 71 (74%) were black African, respectively. There were no differences in anxiety and depression scores between PHIV and HIV-affected participants. Predictors of higher anxiety scores were a higher number of carers in childhood, speaking a language other than English at home, lower self-esteem, ever thinking life was not worth living and lower social functioning. Predictors of higher depression scores were male sex, death of one/both parents, school exclusion, lower self-esteem and lower social functioning. In conclusion, HIV status was not associated with anxiety or depression scores, but findings highlight the need to identify and support young people at higher risk of anxiety and depression.

Psychological Factors Associated with Episodic Chelation Adherence in Thalassemia.

ß-Thalassemia major (ß-TM) is a life-long genetic hemoglobin (Hb) disorder requiring intensive treatment regimens, including frequent blood transfusions and daily chelation therapy. Understanding psychosocial correlates of chelation adherence is important for developing interventions to improve adherence. This study investigated within-participant correlates of oral chelation adherence on a daily (episodic) basis. Thirty-seven adult participants with ß-TM were recruited from clinics at two hospitals (22 males, 9 females, mean age 34.5 years, range 19-54 years). A structured interview was used to assess behavioral and psychological situational variables related to an adherent and a nonadherent episode for each participant. Positive outcome expectancies and higher self-efficacy were both significantly associated with adherent episodes. Behavioral variables, including difficulty in accessing medication, location, and whether alone or with others, were also associated with nonadherent episodes. Findings suggested that situational psychological factors are important for chelation adherence. Adherence interventions should consider focusing on potentially modifiable situational variables (psychological and behavioral).

HIV Disclosure Anxiety: A Systematic Review and Theoretical Synthesis.

HIV disclosure can help people living with HIV to access social support, enhance antiretroviral adherence, facilitate engagement in care and reduce unprotected sex. Given interpersonal risks associated with HIV disclosure, however, anxiety about sharing one's status is common. To investigate anxiety about HIV disclosure in HIV-positive populations, we conducted a systematic review of qualitative and quantitative studies, with 119 studies included. The review demonstrated that perceived interpersonal risks are associated with HIV disclosure and outlined evidence of associations with anxiety, fear and worry. We present a new cognitive model of HIV disclosure anxiety adapted from clinical theories of health and social anxiety, consistent with evidence from the review. The model attempts to explain the development and maintenance of anxiety in individuals whose functioning is most affected by concerns about sharing their status. Implications for helping people living with HIV struggling with significant levels of anxiety about HIV disclosure are discussed.

The Adolescent HIV Disclosure Cognition and Affect Scale: Preliminary Reliability and Validity.

Objectives: Globally, there are 2 million HIV-positive 10-19-year-olds. One challenge for this population is sharing their HIV status with others (onward HIV disclosure). There are no multi-item, multidimensional scales of HIV disclosure cognitions and affect for young people living with HIV. An 18-item measure of HIV disclosure cognition and affect was developed, administered to 65 adolescents living with HIV (aged 12-16 years). Data were explored using principal component analysis and preliminary construct and criterion validity assessed. Three factors were revealed: negative disclosure attitudes and feelings, self-efficacy, and positive disclosure attitudes and feelings. The full scale and its subscales were internally consistent. The total score showed statistically significant positive relationships with HIV disclosure in the past 6 months, HIV disclosure intention and self-perception. Preliminary evidence of the measure's good psychometric properties suggests it may be helpful in future clinical and research work.

Which Psychological Factors are Related to HIV Testing? A Quantitative Systematic Review of Global Studies.

Deciding to test for HIV is necessary for receiving HIV treatment and care among those who are HIV-positive. This article presents a systematic review of quantitative studies on relationships between psychological (cognitive and affective) variables and HIV testing. Sixty two studies were included (fifty six cross sectional). Most measured lifetime testing. HIV knowledge, risk perception and stigma were the most commonly measured psychological variables. Meta-analysis was carried out on the relationships between HIV knowledge and testing, and HIV risk perception and testing. Both relationships were positive and significant, representing small effects (HIV knowledge, d = 0.22, 95 % CI 0.14-0.31, p < 0.001; HIV risk perception, OR 1.47, 95 % CI 1.26-1.67, p < 0.001). Other variables with a majority of studies showing a relationship with HIV testing included: perceived testing benefits, testing fear, perceived behavioural control/self-efficacy, knowledge of testing sites, prejudiced attitudes towards people living with HIV, and knowing someone with HIV. Research and practice implications are outlined.

Intimate relationships in young adults with perinatally acquired HIV: a qualitative study of strategies used to manage HIV disclosure.

An increasing number of children born with perinatally acquired HIV (PAH) are surviving into late adolescence and early adulthood. At this developmental stage, forming and sustaining intimate relationships is important. Young adults with PAH face both normative challenges and additional, HIV-related, relationship stressors. One key issue is the decision about whether and how to share their HIV status with others. Being able to disclose one's HIV status to sexual partners may reduce the risk of onward HIV transmission but is associated with the fear of rejection. There has been little research on how young people with PAH manage such disclosure-related stressors in intimate relationships. This study examined how disclosure challenges are managed by young adults with PAH in the UK within their intimate relationships. Seven participants (five females and two males) currently or previously in an intimate relationship, aged 18-23 years, were recruited from a UK hospital clinic. The majority of participants were of sub-Saharan African origins. They took part in in-depth interviews, with data analysed according to the principles of interpretative phenomenological analysis. Four themes were elicited: (1) decisions about starting, continuing or resuming relationships shaped by disclosure, (2) disclosing early to avoid the pain of future rejection, (3) using condoms to avoid disclosure and (4) testing likely partner reactions to disclosure. The study revealed the significant extent to which HIV disclosure affected the experience of relationships in this population. Interventions to support adolescents and young adults with PAH to disclose to their partners should be developed alongside guidance for professionals. Future research should include older samples of adults with PAH and studies in sub-Saharan African settings.

What leads some people to think they are HIV-positive before knowing their diagnosis? A systematic review of psychological and behavioural correlates of HIV-risk perception.

Current HIV-risk perception refers to the extent to which individuals think they might be HIV-positive. This belief, distinct from the perceived risk about being infected with HIV in the future, is likely to have a range of important consequences. These consequences may include both psychological effects (e.g., impacts on well-being) and behavioural effects (e.g., HIV testing uptake). Given these possible outcomes, and the suggested importance of risk perception in health behaviour models, understanding the behavioural and psychological antecedents of current HIV-risk perception is crucial. This systematic review investigates the relationship between behavioural and psychological factors and current HIV-risk perception (in individuals who are unaware of their actual HIV status). Eight studies were eligible for inclusion in the review (five quantitative and three qualitative studies). Drug risk behaviour and sexual risk behaviour (both self and partner) were often associated with current HIV-risk perception, although other studies failed to show a relationship between one's own sexual risk behaviour and risk perception. Psychological factors were only rarely assessed in relation to current HIV-risk perception. Where these variables were included, there was evidence that experiencing symptoms perceived to be consistent with HIV and prompts to test were associated with increased current HIV-risk perception. These findings are consistent with the Common-Sense Model (CSM) of illness representation and self-regulation. Methodological quality criteria were rarely met for the included studies. In addition, it was often difficult to ascertain whether potentially includable studies were eligible due to imprecise definitions of HIV-risk perception. Research and practice implications are discussed, with particular emphasis on the role of risk appraisals as a potential mediator of the relationship between HIV-risk behaviour, symptoms and current HIV-risk perception.

Episodic medication adherence in adolescents and young adults with perinatally acquired HIV: a within-participants approach.

Due to the success of antiretroviral (ART) medications, young people living with perinatally acquired HIV (PHIV+) are now surviving into adolescence and young adulthood. Understanding factors influencing ART non-adherence in this group is important in developing effective adherence interventions. Most studies of ART adherence in HIV-positive populations assess differences in adherence levels and adherence predictors between participants, over a period of time (global adherence). Many individuals living with HIV, however, including PHIV+ young people, take medication inconsistently. To investigate this pattern of adherence, a within-participants design, focussing on specific episodes of adherence and non-adherence, is suitable (episodic adherence). A within-participants design was used with 29 PHIV+ young people (17 female, median age 17 years, range 14-22 years), enrolled in the UK Adolescents and Adults Living with Perinatal HIV cohort study. Participants were eligible if they could identify one dose of medication taken and one dose they had missed in the previous two months. For each of the two episodes (one adherent, one non-adherent), behavioural factors (whom they were with, location, routine, day, reminders) and psychological factors at the time of the episode (information about medication, adherence motivation, perceived behavioural skills to adhere to medication - derived from the Information-Motivation-Behavioural Skills (IMB) Model - and affect) were assessed in a questionnaire. Non-adherence was significantly associated with weekend days (Friday to Sunday versus Monday to Thursday, p = .001), lack of routine (p = .004), and being out of the home (p = .003), but not with whom the young person was with or whether they were reminded to take medication. Non-adherence was associated with lower levels of behavioural skills (p < .001), and lower positive affect (p = .005). Non-adherence was not significantly associated with negative affect, information about ART, or ART motivation. The use of situationally specific strategies to enhance adherence in young people who take their medication inconsistently is proposed.

Social competence in children and young people treated for a brain tumour.

PURPOSE: The purposes of this study were to provide a multi-informant assessment of social competence in 8-16-year olds treated for a brain tumour (BT) and then to compare these assessment outcomes to peers. METHOD: A cross-sectional, mixed (within and between group) design was used to compare a paediatric BT survivor group (n = 33) with an age-matched control group (n = 34) on two multi-informant (self-report, parent, teacher) social competence questionnaires: Social Skills Improvement System (SSIS) and Social Responsiveness Scale (SRS). Demographic factors (age, gender, social economic status (SES), intellectual ability and emotional/behavioural difficulties were investigated as potential non-insult-related risk factors. RESULTS: Compared to controls, the BT group was reported to have difficulties in social adjustment, interactions and information processing, on both social competence questionnaire measures by parents and teachers, but not self-report. Social competence scores for the BT group were broadly distributed within the normal-severe clinical range, with 40 % of BT survivors scoring in the clinical range for social competence difficulties on the SRS. Lower intellectual ability and emotional/behavioural difficulties accounted for some of the group differences in social competence, but group effects remained once estimated IQ and emotional/behavioural difficulties were controlled for. CONCLUSIONS: Paediatric BT survivors were reported by parents and teachers to have significant difficulties at all three levels of social competence: adjustment, interaction and information processing. The results highlight the importance of routine assessment in clinic settings for social competence and emotional/behavioural difficulties in BT survivors, to promote early identification and to ensure that survivors are referred for appropriate services and intervention as part of their multi-disciplinary care package.