Development and Usability Evaluation of an mHealth Application for Symptom Self-Management in Underserved Persons Living with HIV

Effective symptom management is essential to decrease symptom severity and improve health-related quality of life for persons living with HIV (PLWH). A mobile health (mHealth) application (app) has the potential to be an effective delivery mode of an existing paper-based symptom management manual with self-management strategies for underserved PLWH. The quality of the mHealth app requires a thorough understanding of the needs of the intended end-users and ensuring the app’s usability. The purpose of this study was to translate paper-based health information into an mHealth app for symptom self-management in underserved PLWH, entitled mVIP (mobile Video Information Provider), and assess its usability. To achieve this goal, usability was evaluated rigorously throughout the development process of mVIP. Based on a stratified view of health information technology (IT) usability evaluation framework, usability evaluation was sequentially conducted with the following three levels: 1) user-task, 2) user-task-system, and 3) user-task-system-environment. At level 1 (user-task), we applied a user-centered design method to guide the information architecture of mVIP. Using a reverse in-person card sorting technique, symptoms and self-management strategies from a paper-based HIV/AIDS symptom management manual were ranked. The rank order of the 13 symptoms and 151 self-management strategies determined the order of appearance to end-users of the mVIP app, with higher-ranked symptoms and strategies appearing first. Based on the findings, we developed a prototype of mVIP as following: 1) once users log in, they are guided by an avatar through a series of 13 symptom questions ascertaining the nature and severity of their symptoms, and 2) the avatar recommends three self-management strategies for each symptom reported. At level 2 (user-task-system), we conducted a usability evaluation of the mVIP prototype in a laboratory setting through end-user usability testing and heuristic evaluation. In end-user usability testing, we used an eye-tracking and retrospective think-aloud method to examine task performance by 20 PLWH. For the heuristic evaluation, five usability experts in informatics assessed the user interface. In the two usability evaluations conducted in a laboratory setting, we found strong user acceptance of the mVIP prototype while identifying a number of usability issues with this prototype. Based on the recommendations from the end-users and heuristic evaluators, we iteratively refined the app’s content, functionality, and interface. We then inserted videos of the finalized symptom self-management strategies into the refined mVIP prototype. At level 3 (user-task-system-environment), the usability of the refined mVIP prototype was evaluated in a real-world setting. Through 10 in-depth interviews and four focus groups conducted at the conclusion of a three-month randomized controlled trial, we explored in-depth understandings of users’ experiences, perceptions, and satisfaction of mVIP use. Findings from the study showed that first, mVIP is useful for HIV-related symptom self-management and has the potential for being used as a communication tool with healthcare providers; and second, mVIP is easy to use to monitor symptom experience over time. At the same time, participants suggested mVIP be more sensitively tailored based on years from initial diagnosis of HIV, an individuals’ age, and conditions. The overall user satisfaction with the mVIP prototype was high, which reflects strong user acceptance of mVIP. Integral to the findings from the three-level usability evaluation, we assessed the quality of the mVIP prototype in use and found the prototype was highly accepted by PLWH with high user satisfaction. This study will add to the body of literature on translation of evidence-based health information into an mHealth app and its usability assessment, which highlights the importance of the use of mobile technology for PLWH, specifically racial and ethnic minorities and those from low-socioeconomic groups who have limited health literacy and low level of education

Perceived symptom manageability - synthesis of a new use of a known concept based on a sample of HIV outpatients

Symptom management issues are regularly discussed in medical follow-up appointments, however, despite the integration of patients' perspectives in symptom management negotiations, traditional-ly used measures (i.e., symptom severity and frequency) to identify symptoms that need management do not seem to capture the patient's needs and, consequently, patients' expectations are frequently unmet 141. Although symptom frequency, symptom severity, and associated distress or bother are considered core indicators of the patient's individual experience of perceived symptoms 13,60,75,142,143, they do not truly cap-ture the wholeness of PLWHs' lived experience associated with symptoms in the chronic phase of the HIV trajectory. Therefore, they only allow the identification of a limited number of symptoms that need man-agement due to symptom expression and associated distress. Moreover, symptom lists that were invented before cART was widely available may not have been adapted to new symptom profiles, and are of limited value to capture symptoms of concern to patients in a chronic phase. Subjective illness theories, such as the Common sense Theory by Leventhal et al. (1992) support the assumption that objective measures may be of limited importance to patients, as illness perception is greatly determined by individual concepts and interpretations. Patients, according to this model, base the assessment of symptoms that need management not only on symptom expression, but rather on a combination of their own interpretation of perceived symptoms, illness representation (e.g., cause, time-line, control), personal (such as demographic and cul-tural) factors, and social support. Moreover, these factors are mutually influential and individual weighted. Symptom severity or frequency, thus, may or may not be the most important aspects when pa-tients express concern about a symptom. Moreover, to our knowledge, there is no instrument or concept currently used which integrates dimensions of daily living with HIV to identify symptoms that need man-agement in the chronic phase of HIV. The most promising approach to caring for patients with chronic diseases is to approach the illness as a collaborative endeavor, acknowledging the patient as an expert of his condition, living context, and emotional situation. Health care providers and patients not only exchange information but also are partners for negotiating approaches to symptom self-management in every-day life. Comparing the parameters used to identify symptoms that need management and those important for patient self-management in daily life, it becomes clear that the patient perspective on consequences of a symptom for daily life are often neglected. In order to assess a patient's unique and individual perception of symptoms that need management, and in the future, the success of symptom management interventions, we therefore propose to use a meas-ure representing this individuality and uniqueness. As in clinical encounters, patients often describe their life with symptoms using sentences like "I can't manage symptom x or y anymore", or "well, yes, symp-toms are well manageable," thus directly referring to their ability to influence the impact of the symptoms on their life, we suggest "perceived symptom manageability" to meet this condition: the patient is the only person who is able to assess the perceived manageability of a symptom in the context of his or her lived experience

AIDS Behav

Mobile health (mHealth) technology can be a valuable tool in the management of chronic illnesses, including HIV. Qualitative research methods were used to identify the desired content and features of a mobile app for meeting and improving the healthcare needs of persons living with HIV (PLWH). We conducted six focus group sessions with 50 English-or Spanish-speaking PLWH in New York City. To inform data analysis and to illustrate how mHealth technology can be used as a persuasive strategy for improving the health of PLWH, we integrated Fogg's functional role triad for computing technology model with the self-determination theory to illustrate how mHealth technology can be used as a persuasive strategy for improving the health of PLWH. Participants suggested several tools for meeting their healthcare needs, including: reminders/alerts, lab results tracking, and notes on health status. mHealth technology can function as a social actor by providing chat boxes/forums, testimonials of lived experiences, and personal outreach. Examples of media that can be used as a persuasive technology include games/virtual rewards, coding of health tasks, and simulations on how to connect with PLWH. Findings from these focus groups can be used to design a mobile app for PLWH\uc2\ua0that is targeted to meet their healthcare needs.1U01PS00371501/PS/NCHHSTP CDC HHS/United StatesK12 RR017648/RR/NCRR NIH HHS/United States2016-06-01T00:00:00Z25572830PMC449793

Understanding respiratory illness in an HIV positive population with a high uptake of antiretroviral therapy

The availability of effective antiretroviral therapy (ART) means that HIV infection is now a manageable chronic condition. However, although AIDS-related conditions are now rare in people living with HIV (PLWH) using ART, this population may be at greater risk of some non-AIDS conditions (such as cardiovascular disease) than the general population. The respiratory health of PLWH using ART has been less well explored. This thesis provides novel insights into respiratory illness among PLWH in a population with a high uptake of antiretroviral therapy. I have summarised existing evidence in a narrative literature review of respiratory illness in PLWH and systematic review of studies comparing respiratory symptoms in people with and without HIV. I have evaluated the prevalence of respiratory illness and carriage of respiratory bacterial and viral pathogens in cross-sectional data. I used molecular microbiology techniques to explore the carriage of pathogenic respiratory bacteria in PLWH. I have completed a 12-month prospective study of a cohort of HIV positive and negative participants to determine the frequency of acute respiratory illness and factors associated with illness incidence and severity in this population. I found that respiratory symptoms are more common among HIV positive than negative people despite ART and that this difference is only partly explained by established risk factors such as tobacco smoking. In the population studied, the frequency of objective respiratory impairment as measured by spirometry was lower than that reported in many other HIV positive populations. I found no difference in the frequency of acute respiratory illnesses between HIV positive and negative individuals, however PLWH reported more severe symptoms and were more likely to seek healthcare when these illnesses occurred. In collaboration with colleagues, I have assessed interventions to improve or maintain respiratory health among PLWH. We evaluated the uptake of influenza immunisation and referral to smoking cessation services and identified barriers to these cost-effective interventions. In summary, PLWH remain at greater risk of respiratory illness than the general population despite ART. In part this is due to greater exposure to known risk factors such as tobacco smoking, but even after adjustment for these, an independent effect of HIV status remains. We need a better understanding of the causes of this and interventions to improve the respiratory health of this population

Insomnia and mechanistic pathways to atherosclerotic CVD in HIV

Indiana University-Purdue University Indianapolis (IUPUI)Study 1: Background: Insomnia may be a risk factor for cardiovascular disease in HIV (HIV-CVD); however, mechanisms have yet to be elucidated. Methods: We examined cross-sectional associations of insomnia symptoms with biological mechanisms of HIV-CVD (immune activation, systemic inflammation, and coagulation) among 1,542 people living with HIV from the Veterans Aging Cohort Study (VACS) Biomarker Cohort. Past-month insomnia symptoms were assessed by the item, “Difficulty falling or staying asleep?,” with the following response options: “I do not have this symptom” or “I have this symptom and…” “it doesn’t bother me,” “it bothers me a little,” “it bothers me,” “it bothers me a lot.” Circulating levels of the monocyte activation marker soluble CD14 (sCD14), inflammatory marker interleukin-6 (IL-6), and coagulation marker D-dimer were determined from blood specimens. Demographic- and fully-adjusted (CVD risk factors, potential confounders, HIV-related factors) regression models were constructed, with log-transformed biomarker variables as the outcomes. We present the exponentiated regression coefficient (exp[b]) and its 95% confidence interval (CI). Results: For sCD14 and D-dimer, we observed no significant associations. For IL-6, veterans in the “bothers a lot” group had 15% higher IL-6 than veterans in the “I do not have this symptom” group in the demographic-adjusted model (exp[b]=1.15, 95%CI=1.02-1.29, p=.03). This association was nonsignificant in the fully-adjusted model (exp[b]=1.07, 95%CI=0.95-1.19, p=.25). Conclusion: We observed little evidence of relationships between insomnia symptoms and markers of biological mechanisms of HIV-CVD. Other mechanisms may be responsible for the insomnia-CVD relationship in HIV; however, future studies with comprehensive assessments of insomnia symptoms are warranted. Study 2: Background: While insomnia has been identified as a potential risk factor for cardiovascular disease in HIV (HIV-CVD), research on the underlying pathophysiological mechanisms is scarce. Methods: We examined associations between 0-to-12-week changes in sleep disturbance and the concurrent 0-to-12-week changes and the subsequent 12-to-24-week changes in markers of systemic inflammation, coagulation, and endothelial dysfunction among people living with HIV (n = 33-38) enrolled in a depression clinical trial. Sleep disturbance was measured using the Pittsburgh Sleep Quality Index. Inflammatory markers interleukin-6 (IL-6) and C-reactive protein (CRP) and coagulation marker D-dimer were determined from blood specimens; endothelial dysfunction marker brachial flow-mediated dilation (FMD) was determined by ultrasound. 0-to-12-week variables were calculated as 12-week visit minus baseline, and 12-to-24-week variables were calculated as 24-week minus 12-week. We constructed multivariate linear regression models for each outcome adjusting for age, sex, race/ethnicity, Framingham risk score, and baseline depressive symptoms. Results: We did not observe statistically significant associations between 0-to-12-week changes in sleep disturbance and 0-to-12-week or 12-to-24-week changes in IL-6, CRP, D-dimer, or FMD. However, we did observe potentially meaningful associations, likely undetected due to low power. For 0-to-12-weeks, every 1-standard deviation (SD) increase, or worsening, in the sleep disturbance change score was associated with a 0.41 pg/mL and 80 ng/mL decease in IL-6 and D-dimer, respectively. For 12-to-24-weeks, every 1-SD increase in sleep disturbance change score was associated with a 0.63 mg/L, 111 ng/mL, and 0.82% increase in CRP, D-dimer, and FMD, respectively. Conclusion: We observed potentially meaningful, though not statistically significant, associations between changes in sleep disturbance and changes in biological mechanisms underlying HIV-CVD over time. Some associations were in the expected direction, but others were not. Additional studies are needed that utilize larger samples and validated, comprehensive assessments of insomnia

Comput Inform Nurs

R01 NR015737/NR/NINR NIH HHS/United StatesU01 PS003715/PS/NCHHSTP CDC HHS/United States2017-05-01T00:00:00Z27153226PMC494452

The burden of poor mental health on parenting in mothers living with HIV in Zimbabwe

Background Mothers living with HIV are at increased risk of comorbidities, including mental health conditions. Mental health condition rates may be high yet often undiagnosed and untreated. This study aimed to assess the prevalence and factors associated with mental health conditions in mothers living with HIV and their association with parenting behaviour. Methods Firstly, the 8-item Shona Symptom Questionnaire (SSQ-8), which identifies the risk of common mental disorders (CMD), was validated in a sample of 264 primary care clinic attendees compared to a gold standard, using a receiver operating characteristic curve to identify the optimal cut point of 6. The next phase used data from 485 mothers living with HIV, participating in a cluster-randomised controlled trial evaluating parenting and income interventions, to explore the prevalence of and risk factors for CMD, defined as a 3-category ordinal variable (no CMD, CMD at one timepoint, CMD at both timepoints). I also investigated the association of CMD with parenting stress, parenting sense of competence and discipline. Lastly, a comprehensive parenting intervention was evaluated using mixed methods and guided by the MRC guidance to evaluate complex interventions. Results The SSQ-8 was found to have good validity when compared to the clinical assessments conducted by psychologists using the gold standard, Structured Clinical Interview for DSM-V (SCID). In the sample living with HIV, the optimal cut-off was ≥6 with an area under the curve of 89% (95% CI: 83%–93%). A quarter (N=127, 25.7%) of the 495 mothers in our sample experienced repeat CMD symptoms and a further 33.5% experienced CMD symptoms at one timepoint, with no difference by trial arm. Associated risk factors for CMD included food insecurity (aOR=2.23 (1.32, 3.78) p=0.003); domestic violence (aOR=3.12 (95% CI: 1.71, 5.70) p<0.001); mobility problems (aOR=2.71 (1.55, 4.72) p<0.001); increased pain and discomfort (aOR=1.61 (0.19, 2.43) p=0.015), low resilience (aOR=0.61 (0.42, 0.89) p=<0.010) and low postpartum bonding (aOR=3.13 (1.78, 5.52) p<0.001). CMD was associated with increased parenting stress. Mean parenting stress (total score) standard deviation scores (SD) were higher among mothers with repeat CMD symptoms (97.1, SD 15.0) compared to those with CMD symptoms at one timepoint (84.8, SD 14.8) and those without CMD symptoms (78.0, SD 12.8). Children of parents with repeat CMD were almost three times as likely to have been spanked >20 times as opposed to children with no CMD symptoms (14.2% vs 5.0%). A multivariate model found no association between repeat CMD symptoms and harsh discipline after adjusting for parenting stress. The process evaluation provided evidence that complex parenting interventions are feasible, but there is a need to foresee and address potential contextual and individual barriers to uptake. A major learning point was that future interventions targeting mothers living with HIV should consider lessons learnt from the CHIDO intervention and seek to comprehensively address risk factors not only affecting their parenting outcomes but their mental health. Conclusion The SSQ-8 has been shown to be valid for the use of screening common mental disorders in a population with high HIV prevalence. There is a high burden of mental health conditions in mothers living with HIV. These mothers have been shown to be at risk of experiencing depressive symptoms at different trajectories of their parenting journey, with several risk factors identified. Therefore, there is a need for interventions aimed at improving parenting and child outcomes and also to target addressing the risk factors associated with poor maternal mental health

The association of HIV-related stigma and psychosocial factors and HIV treatment outcomes among people living with HIV in the Volta region of Ghana:A mixed-methods study

Stigma and discrimination have been identified as significant barriers to HIV treatment among people living with HIV (PLWH). HIV stigma affects decision to seek HIV testing and early treatment. Evidence shows that HIV stigma undermines antiretroviral therapy (ART) adherence by affecting the psychological process such as adjusting and coping with social support. In Ghana, stigma toward PLWH occurs in many ways including rejection by their communities and family members, ostracism, and refusal to engage in social interactions such as eating, sharing a bed, or shaking hands. Therefore. we examined PLWH's experiences with different forms of HIV-related stigma and the impact on HIV treatment outcome in the Volta region of Ghana. We employed a convergent mixedmethod approach consisting of a survey with 181 PLWH, four focus group discussions with 24 survey respondents, and in-depth interviews with six providers. We performed independent samples t-test, ANOVA, and chi-square test to test associations in bivariate analysis and analyzed qualitative data using thematic analysis. In all, 49% of survey respondents reported experiencing high internalized stigma, which was associated with high social support and depression (p&lt;0.001). In qualitative interviews, anticipated stigma was the most salient concern of PLWH, followed by internalized and enacted stigma, which all negatively impacted HIV treatment and care. Stigma was experienced on multiple levels and affected psychosocial and treatment outcomes. Findings suggest urgent need for HIV-stigma reduction intervention among PLWH and their family, providers, and community members.</p

The association of HIV-related stigma and psychosocial factors and HIV treatment outcomes among people living with HIV in the Volta region of Ghana:A mixed-methods study

Stigma and discrimination have been identified as significant barriers to HIV treatment among people living with HIV (PLWH). HIV stigma affects decision to seek HIV testing and early treatment. Evidence shows that HIV stigma undermines antiretroviral therapy (ART) adherence by affecting the psychological process such as adjusting and coping with social support. In Ghana, stigma toward PLWH occurs in many ways including rejection by their communities and family members, ostracism, and refusal to engage in social interactions such as eating, sharing a bed, or shaking hands. Therefore. we examined PLWH's experiences with different forms of HIV-related stigma and the impact on HIV treatment outcome in the Volta region of Ghana. We employed a convergent mixedmethod approach consisting of a survey with 181 PLWH, four focus group discussions with 24 survey respondents, and in-depth interviews with six providers. We performed independent samples t-test, ANOVA, and chi-square test to test associations in bivariate analysis and analyzed qualitative data using thematic analysis. In all, 49% of survey respondents reported experiencing high internalized stigma, which was associated with high social support and depression (p&lt;0.001). In qualitative interviews, anticipated stigma was the most salient concern of PLWH, followed by internalized and enacted stigma, which all negatively impacted HIV treatment and care. Stigma was experienced on multiple levels and affected psychosocial and treatment outcomes. Findings suggest urgent need for HIV-stigma reduction intervention among PLWH and their family, providers, and community members.</p