Cultural adaption, translation, preliminary reliability and validity of psychological and behavioural measures for adolescents living with HIV in Botswana: A multi-stage approach.

Human immunodeficiency virus (HIV) remains a significant public health issue among young people living in Botswana. There is a need for reliable and valid psychological and behavioural measures of causally important constructs for this population. We developed a new HIV knowledge measure for use with 10-19-year-olds living with HIV and translated and adapted additional tools measuring HIV adjustment, HIV disclosure cognitions and affect, HIV communication beliefs, antiretroviral (ART) adherence, and self-esteem, using a multi-step process. This included (1) item generation for the HIV knowledge questionnaire, (2) translation including back-translation and expert review, (3) cognitive interviewing, (4) reliability testing (5) preliminary validity analysis. The HIV Knowledge Questionnaire for Adolescents living with HIV, the Illness Cognition Questionnaire, the Adolescent HIV Disclosure Cognition and Affect Scale, the HIV Communication Beliefs Scale, and the Rosenberg Self-Esteem Scale showed acceptable or good reliability and some evidence of validity for adolescents living with HIV in Botswana.

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.

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.

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.

How is Aging Perceived to Affect Well-being in Women Older than 50 Years Living With HIV? A Qualitative Systematic Review.

ABSTRACT: Advances in HIV treatment have led to more people with HIV living to 50 years and older. No reviews have qualitatively analyzed and synthesized the literature relevant to theory and practice for well-being specifically in Women living with HIV (WLWH) aged 50 years and older. Sixteen eligible qualitative studies were critically appraised and thematically synthesized to investigate how aging was perceived to affect well-being in WLWH aged 50 years and older. Six themes demonstrated how HIV-related stigmas negatively affected social well-being, and how adjusting to living and aging with HIV negatively affected psychological and physical well-being of older WLWH. Holding caring roles also negatively affected physical well-being of WLWH. Globally, majority women aging with HIV were found to experience additional stigmas. Further research could elucidate how HIV-related stigma affects the well-being of global majority women living and aging with HIV. Recommendations are made for future HIV-related clinical practice and theory development.

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.

'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.

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.

Health-related guilt in chronic primary pain: A systematic review of evidence.

PURPOSE: Chronic primary pain conditions are characterized by significant functional disability, emotional distress, and diagnostic uncertainty. Health-related guilt associated with coping and living with chronic pain is poorly understood. There had been no attempts to synthesize findings on health-related guilt across studies. Therefore, the aim of this study was to conduct a systemic review of evidence, to enable an understanding of the role of health-related guilt in chronic primary pain, and to provide directions for future research. METHOD: A search strategy was developed based on our eligibility criteria. Four databases (PsycINFO, Scopus, PubMed, and Web of Science) were searched for relevant papers from inception to 8 July 2020. Data from 12 qualitative and six quantitative studies were synthesized narratively. RESULTS: The review of qualitative studies resulted in three themes, relating to the management of pain, diagnostic uncertainty/legitimizing pain, and how participants' actions or inactions affect others. These findings were integrated with evidence from quantitative studies, which showed that higher levels of guilt were associated with more pain and pain interference, functional impairment, and poorer psychological and social functioning. CONCLUSIONS: The findings demonstrate that health-related guilt is an important psychological factor associated with more pain and poorer function in people with chronic primary pain conditions. Future research should examine health-related guilt as a potential mediating/moderating factor leading to more distress and suffering in this population and as a potential target for interventions.

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).

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: alicen.nickson@rhul.ac.uk. Date and version: April 2020. Protocol version 3.5.

Factors Associated With Nonadherence to Antiretroviral Therapy Among Young People Living With Perinatally Acquired HIV in England.

Young people living with perinatally acquired HIV may be at risk of poor adherence to antiretroviral therapy; identification of predictors, using a conceptual framework approach proposed previously by others, is important to identify those at higher risk. In 261 young people with perinatally acquired HIV in England, 70 (27%) reported 3-day nonadherence, 82 (31%) last month nonadherence, and 106 (41%) nonadherence on either measure. Of those reporting nonadherence on both measures, 52% (23/44) had viral load of <50 copies/ml, compared with 88% (127/145) of those reported being fully adherent. In multivariable analysis, young person and medication theme factors were associated with nonadherence. The main predictors of 3-day nonadherence were antiretroviral therapy containing a boosted protease inhibitor and poorer quality of life. Predictors of last month nonadherence were having told more people about one's HIV status, worse self-perception about having HIV, and boosted protease inhibitor-based regimens. The consistency of individual young person and medication factors in predicting nonadherence gives insight into where interventions may best be targeted to improve adherence.

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.

'I don't even know how to start that kind of conversation': HIV communication between mothers and adolescents with perinatally acquired HIV.

Young people with perinatally acquired HIV are now surviving into late adolescence and adulthood. We explored HIV communication within mother/adolescent dyads following naming of the adolescents' HIV. Five adolescents with perinatally acquired HIV (14-16 years) and their biological mothers were interviewed separately. HIV communication between mothers and children was rare. Discussion most commonly related to biomedical aspects of HIV. Onward HIV disclosure was discouraged by mothers, which often contrasted with adolescents' beliefs. Discussing emotional and sexual aspects of HIV was mutually avoided. Culturally sensitive support and guidance should be offered to families about discussing HIV, considering potentially differing perspectives.

A preliminary analysis of the association between perceived stigma and HIV-related pain in South Africans living with HIV.

BACKGROUND:  Stigma related to the human immunodeficiency virus (HIV) remains common and has been associated with severity of HIV-related symptoms. Associations between HIV stigma and HIV-related pain, one of the most common symptoms in HIV, have however not been investigated. Data from low back pain populations suggest that stigma is associated with worse pain intensity and so we hypothesised that the same would be the case in HIV. AIM:  The goal of this study was to assess the association between HIV stigma and pain intensity in people living with HIV (PLWH) with chronic pain whilst controlling for depression, a well-established correlate of pain. SETTING:  The study took place at an HIV clinic in Johannesburg, South Africa. METHODS:  Mediation analysis was used to assess the effect of depression on the relationship between stigma and pain intensity in a cross-sectional cohort of 50 PLWH and chronic pain (pain most days of the week for > 3 months). All participants were assessed using the HIV/AIDS Stigma Instrument - PLWA, an 11-point numerical pain rating scale and the Beck Depression Inventory II. RESULTS:  In all, 88% (44/50) of participants reported experiencing some form of HIV stigma (HIV stigma scale score ≥ 1). Worst pain intensity and depressive symptoms individually correlated with total stigma score (Spearman's r = 0.33, p = 0.02 for both). The mediation analysis highlighted that mediation of the relationship by depression was equivocal (b = -0.002, bootstrapped confidence interval -0.02 to 0.00). CONCLUSION:  Whilst these preliminary data are marginal, they do suggest that associations between HIV stigma and HIV-related pain warrant further investigation. Future study should also include potential mechanisms, which may include mediation through depression.

"The People That I Think Are Not Going to React Good, I Am Not Going to Tell": Onward Disclosure to Friends by Young Adults With Behaviorally Acquired HIV.

Sharing their HIV status with friends may help young people diagnosed with behaviorally acquired HIV access social support. Our qualitative study used constructivist grounded theory to explore onward HIV disclosure decisions within friendships of young adults living with behaviorally acquired HIV. Semistructured interviews were conducted with 10 participants (ages 22-26 years). Three themes were identified: (a) personal factors influencing disclosure decisions; (b) social factors influencing disclosure decisions; and (c) disclosure decision outcomes. The relational context seemed to be particularly important in deciding whether or not to disclose. Participants who had shared their status reported no negative and some positive consequences. Anticipated stigma was influential in situations where participants chose not to disclose; however, friendships were not adversely affected by nondisclosure. Key clinical implications are discussed.

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 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.

The Adolescent HIV Communication Belief Scale: Preliminary Reliability and Validity.

Globally, there are nearly 2 million HIV positive children, many of whom are adolescents. The majority have perinatally acquired HIV. A key challenge for this population is communicating about HIV to meet emotional and practical needs. Despite evidence of its benefits, HIV communication in adolescents with HIV is rare. To enhance HIV communication, individuals' beliefs may need to be taken into account. There is no measure of beliefs about HIV communication for adolescents living with HIV. A seven-item measure of HIV communication beliefs was developed and administered to 66 adolescents with HIV in the UK (39 female; aged 12-16 years). Data were explored using principal component analysis. Preliminary criterion-related validity was assessed by examining relationships between the measure and communication occurrence, frequency and intention. Preliminary construct validity was assessed by examining relationships between the measure and HIV stigma, HIV disclosure cognition and affect, quality of life and self-perception. Two factors were revealed: communication self-efficacy and normative beliefs; and communication attitudes. The full scale and its subscales were internally consistent. The total score showed statistically significant positive relationships with HIV communication intention, HIV disclosure cognitions and affect, and HIV stigma but not with other variables. Preliminary evidence of the measure's good psychometric properties suggests it may be helpful in outlining relationships between HIV communication beliefs and other constructs. It may also be useful in testing interventions that aim to enhance HIV communication in this population. Further work needs to be done to establish the scale's psychometric properties.