Unmet needs of symptom management and associated factors among the HIV-positive population in Shanghai, China: A cross-sectional study.

BACKGROUND: People living with HIV/AIDS (PLWHA) are a vulnerable group who experience multiple physiological and psychological symptoms. A better understanding of unmet symptom management needs will allow researchers to design interventions that are more reflective of deficits in care and more effective at improving patient care. Few studies have focused on unmet needs for symptom management in PLWHA particularly in China. Factors influencing Chinese PLWHA symptom management needs are rarely discussed. AIM: The purpose of this study was to investigate the unmet needs for symptom management of PLWHA and how their symptom burden, HIV perceived stigma, and self-management capacity contributes to HIV-related self-management practices in Shanghai, China. DESIGN: Study participants were recruited from the outpatient and inpatient HIV/AIDS wards in an infectious hospital in Shanghai, China. Self-administered questionnaires were implemented and medical charts were reviewed. RESULTS: A total of 367 participants was recruited from April to September 2017. The results show that 53.1% (195 of 367) of participants presented at least one unmet symptom management need and that symptom burden, as well as perceived stigma, reduced self-management capacity, and no employment significantly affected unmet symptom management needs. CONCLUSION: The findings indicate that there is room for improvement in symptom management for Chinese PLWHA. Culturally appropriate interventions focusing on improving symptom burden, decreasing HIV perceived stigma, and enhancing self-management capacity can enhance symptom management in this population.

Reducing distress and promoting resilience: a preliminary trial of a CBT skills intervention among recently HIV-diagnosed MSM in China.

People living with HIV/AIDS (PLWHA) in China experience significant psychological distress, due to high rates of stigma and low availability of mental health resources. Recently diagnosed Chinese PLWHA who are men who have sex with men (MSM) are particularly vulnerable to distress, facing both HIV and sexual orientation stigma. Reducing distress and enhancing psychological resilience is critical in promoting wellbeing. However, no research to date has examined evidence-based interventions to reduce psychological symptoms and improve resilience in this population. Based on qualitative research on their mental health needs, we developed a culturally tailored, brief 3-session CBT skills-based intervention for integration into primary care [Yang, J. P., Simoni, J., Cheryan, S., Shiu, C., Chen, W., Zhao, H., & Lu, H. (2018). The development of a brief distress reduction intervention for individuals recently diagnosed with HIV in China. Cognitive Behavioral Practice, 25(2), 319-334. doi: 10.1016/j.cbpra.2017.08.002 ]. The intervention includes cognitive restructuring to address depressive thought patterns, behavioral activation to decrease isolation, and paced breathing to reduce anxiety. We conducted a pilot Type 1 hybrid effectiveness-implementation trial assessing pre-post mental health outcomes as well as feasibility, acceptability, and appropriateness information. Ten recently diagnosed MSM completed the research protocol of three individual weekly sessions. Paired-samples t tests demonstrated significant reduction in HIV-related distress, depression, problems with adjustment, as well as improvements in resilience, and perceived social support. Participants and community advisory board members found the intervention highly acceptable, appropriate, and feasible. Preliminary data from the first known study examining a psychological intervention with evidence-based components for recently diagnosed Chinese MSM suggests that this brief intervention may be useful for reducing distress and promoting resilience.

A structural equation model of patient-healthcare provider relationships and HIV-infected patient outcomes in Chinese populations.

Obtaining maximum antiretroviral therapy (ART) adherence is critical for maintaining a high CD4 count and strong immune function in PLWHA. Key factors for achieving optimum adherence include good medication self-efficacy, decreased medication-taking difficulties, and positive patient-healthcare provider (HCP) relationships. Limited studies have analyzed the correlation of these factors and ART adherence in Chinese population. In this paper, structural equation modeling was performed to assess the proposed model of relations between patient-HCP relationships and adherence. Audio Computer-Assisted Self-Interview (ACASI) software was used to collect data on ART adherence and patient variables among 227 PLWHA in Shanghai and Taipei. Participants completed a one-time 60-minute ACASI survey that consisted of standardized measures to assess demographics, recent CD4 counts, self-efficacy, patient-HCP relationship, adherence, and medication-taking difficulties. The data shown the relationship between patient-HCP relationships and adherence was significantly consistent with mediation by medication self-efficacy. However, patient-HCP interaction did not directly influence medication-taking difficulties, and medication-taking difficulties did not significantly affect CD4 counts. Furthermore, patient-HCP interactions did not directly impact CD4 counts; rather, the relation was consistent with mediation (by either better medication self-efficacy or better adherence) or by improved adherence alone. Future interventions should be designed to enhance self-management and provide better patient-HCP communication. This improved communication will enhance medication self-efficacy and decrease medication-taking difficulties. This in turn will improve medication adherence and immune function among PLWHA.

Quality of life in HIV-infected Chinese women and their family caregivers: an intervention study.

China is experiencing a rapid increase in the number of HIV-infected women. In this study, we describe the development and preliminary evaluation of an intervention tailored for Chinese HIV-infected women and caregivers to improve their self- and family management, with goals of enhancing their physical quality of life (QOL) and decreasing their depressive symptomatology. Forty-one HIV-infected women and their caregivers were recruited from two premier Chinese hospitals from July 2014 through March 2016. Participants were randomized to either the control or intervention arm for the Self- and Family Management Intervention (SAFMI). Each study dyad in the intervention arm received three counseling sessions with a nurse interventionist. At baseline, immediate post-intervention (month 1) and follow-up (month 3), the participants were assessed by a self-reported survey. Generalized Hierarchical Linear Modeling was used to evaluate the efficacy of the intervention. Chinese HIV-infected women in the intervention arm had significantly higher probability of higher physical QOL at month 1 and lower probability of clinically meaningful depressive symptomatology at month 3 compared with women in the control arm. In contrast, the effects of the intervention were less salient for caregivers. This study represents one of the first in China to include family caregivers in HIV management. Feasibility and acceptability were high, in that family members were willing to join the study, learn about HIV, and practice new skills to support the HIV-infected women in their lives. A larger trial is needed to fully evaluate this intervention which shows promising preliminary effects in promoting physical QOL and decreasing depressive symptomatology among Chinese HIV-infected women.

Substance use, anxiety, and self-management efficacy in HIV-positive individuals: A mediation analysis.

CONTEXT: In China, the social stigma of both substance use and HIV remains major barriers. HIV+ individuals have been demonstrated to have higher psychosocial distress in the literature. To ensure quality of life among HIV+ Chinese individuals, self-efficacy in HIV-related management including substance use and anxiety is the key to suppress viral load and maintain healthy lives. OBJECTIVES: We examine the mediation relationship among substance use, anxiety, and self-management efficacy. METHOD: A cross-sectional study design was used. 137 HIV+ individuals were recruited from two premier Chinese hospitals: Beijing's Ditan Hospital and Shanghai's Public Health Clinic Center (SPHCC). RESULTS: HIV+ substance users had significantly lower HIV-management efficacy and higher anxiety scores. About a third of the relations between substance use and anxiety was mediated by HIV-management self-efficacy. Those who used substances in the previous week had higher anxiety levels suggesting the presence of a recent effect. Their higher levels of anxiety could be largely explained by their lower HIV-management efficacy. CONCLUSION: It is useful for healthcare providers to assess substance use behaviors in HIV+ individuals as well as provide support in managing anxiety in this population. Meanwhile, enhancing self-management efficacy to ensure healthy lifestyles may support achieving optimal lives with HIV.

Early hypercytokinemia is associated with interferon-induced transmembrane protein-3 dysfunction and predictive of fatal H7N9 infection.

A unique avian-origin A/H7N9 influenza virus has so far caused 134 cases with 44 deaths. Probing the host factors contributing to disease severity, we found that lower levels of plasma inflammatory cytokines on hospital admission correlated with faster recovery in 18 patients with A/H7N9 influenza virus, whereas high concentrations of (in particular) IL-6, IL-8, and macrophage inflammatory protein-1ß were predictive of a less favorable or fatal outcome. Analysis of bronchoalveolar lavage samples showed up to 1,000-fold greater cytokine/chemokine levels relative to plasma. Furthermore, patients with the rs12252-C/C IFN-induced transmembrane protein-3 (IFITM3) genotype had more rapid disease progression and were less likely to survive. Compared with patients with the rs12252-T/T or rs12252-T/C genotype of IFITM3, patients with the C/C genotype had a shorter time from disease onset to the time point when they sought medical aid (hospital admission or antiviral therapy) and a shorter interval to development of the acute respiratory distress syndrome stage (reflected by shorter intervals between clinical onset and methylprednisolone treatments and higher rates of mechanical ventilator use), as well as experiencing elevated/prolonged lung virus titers and cytokine production and higher mortality. The present analysis provides reported data on the H7N9 influenza-induced "cytokine storm" at the site of infection in humans and identifies the rs12252-C genotype that compromises IFITM3 function as a primary genetic correlate of severe H7N9 pneumonia. Together with rs12252 sequencing, early monitoring of plasma cytokines is thus of prognostic value for the treatment and management of severe influenza pneumonia.

Facilitators of and barriers to HIV self-management: Perspectives of HIV-positive women in China.

AIMS: The aim is to explore perceived facilitators of and barriers to HIV self-management for HIV-positive Chinese women. BACKGROUND: Little is known about self-management among HIV-positive Chinese women in China. Understanding the experiences of this population is needed to promote self-management. METHODS: 27 in-depth interviews were conducted in Beijing and Shanghai. Facilitators included families being supportive after disclosure, patients learning how to live with HIV, antiretroviral therapy (ART) adherence, and rediscovering the meaning of life. Several barriers were also identified, including lack of support, stigma, fatigue, and financial difficulty. RESULTS: HIV disclosure is essential to obtaining necessary support. Ironically, disclosing to family members who stigmatize the disease may invite unwelcome responses. Helping HIV-positive women to decrease self-stigma and develop an effective way to disclose, if they choose to, is important. CONCLUSION: Future interventions should focus on disclosure strategies development and self-management to prevent isolation, enhance social support, and decrease self-stigma.

Fatigue and sleep disturbance in HIV-positive women: a qualitative and biomedical approach.

AIMS AND OBJECTIVES: This study explores how sleep and energy levels were affected in Chinese women diagnosed with HIV in China employing the Actiwatch actigraphy system to collect data on the women's sleep characteristics. BACKGROUND: The worldwide AIDS pandemic, a major impetus behind the recent focus on global aspects of health, is one area in which the behavioural and biomedical expertise of nursing science is sorely needed. In particular, few studies of HIV+ women have examined the association of HIV-related stress with sleep disturbance and fatigue. Especially, fatigue and sleep disturbances are a common complaint among people with HIV. DESIGN: A qualitative study with actigraphy device used. METHODS: In-depth interviews were conducted with 19 HIV+ women in Shanghai, China, from December 2009-March 2010 and within this group, nine of the women agreed to wear an Actiwatch actigraphy device for 72 hours. RESULTS: Two major themes emerged from the in-depth interviews are as follows: sleep disturbance and fatigue. Participants presented varying amounts of sleeplessness, and fatigue resulting from nightmares, worrying about whether to disclose their diagnosis, and whether they might transmit the disease to their partners or children. Among the nine Actiwatch study participants, data shown that those who experienced fragmented sleep also slept more during the daytime. CONCLUSIONS: In this study, Chinese HIV+ women described how stress had caused them to become sleepless. The objective data collected via Actiwatch showed that these women required longer nap times, which indicates they did not have refreshing nocturnal sleep. Designing a culturally acceptable stress management intervention for these women is urgently needed. RELEVANCE TO CLINICAL PRACTICE: Sleep and fatigue level should be evaluated in each visit with HIV care. Nurses need to be trained in evaluating the HIV+ patients' sleep and fatigue status and refer them to psychologist and/or relaxation technique accordingly. Self-management intervention for HIV+ individuals should also include the sleep hygiene into consideration.

Challenges of cross-cultural research: lessons from a U.S.-Asia HIV collaboration.

Many Asian countries have scaled up their research to combat human immunodeficiency virus (HIV). HIV experts from the West have teamed up with these countries to assist in designing research protocols and providing necessary training. In this paper, we document the formation and maintenance of international and interdisciplinary HIV research collaboration among cross-disciplinary researchers working in the United States, Taiwan, and China. We conducted international social-behavioral HIV studies in several major metropolitan areas in Asia. Culturally sensitive issues that could be attributed to social and disciplinary differences have emerged throughout the collaboration process, including questions of who should be the research leader, where should resources be allocated, how should tasks be shared, which topics are valuable for investigation, and what survey questions are allowable. There is now a window of opportunity for greater international and interdisciplinary collaboration; however, for such collaboration to flourish, team dynamics in international research collaboration should be carefully identified and managed before studies are begun.

Concerns of Parental HIV Disclosure in China.

Although parental HIV disclosure has benefits for parents and children, the disclosure rate among parents remains low. This study aims to qualitatively examine parental concerns regarding disclosure of their HIV status to their children. Eighty parents were enrolled in a randomized controlled trial of a three-session disclosure-support intervention, with forty receiving the intervention and forty receiving treatment as usual. Intervention sessions were audio recorded, and transcriptions were qualitatively coded for content related to concerns of disclosure. Four themes emerged: Intention to disclose, disclosure approach, indicators for disclosure, and fears about disclosure. These themes reveal struggles that parents experience when considering HIV disclosure suggesting that an effective disclosure intervention must help parents assess pros and cons, discuss the emotions of the children after the disclosure, and monitor the impact on children's lives after disclosure over time. Future research is needed to implement interventions supporting HIV-positive parents' disclosure decision-making and actions.

Self-Management Behaviors Among Patients With Liver Cirrhosis in Shanghai, China: A Cross-Sectional Study.

Effective self-management of liver cirrhosis requires medication adherence and lifestyle modifications. The purpose of this study was to investigate the self-management behaviors of liver cirrhosis patients and how their knowledge of cirrhosis, psychological status, and self-efficacy contributes to self-management practices in Shanghai, China. Subjects were recruited from the hepatology units in an infectious hospital in Shanghai, China. Self-administered questionnaires were collected and medical charts were reviewed by the research staff. A total of 134 subjects were enrolled from November 2016 to March 2017. The results indicate that the self-management behaviors mean score was 2.51 out of 4 and that depression, severity of cirrhosis, and self-efficacy significantly affected self-management behaviors and explained 22.9% of the total variance. The findings also indicate that psychological stress, disease severity, and self-efficacy affected self-management behaviors in liver cirrhosis patients. Interventions focusing on decreasing depression and enhancing self-efficacy according to disease severity should improve self-management behaviors in this population.

The implementation and evaluation of HIV symptom management guidelines: A preliminary study in China.

OBJECTIVE: The overarching objective of this study was to examine the effectiveness of HIV symptom management guidelines in China in reducing the incidence and severity of symptoms and improving patients' quality of life. METHODS: We conducted a controlled, pre- and post-implementation design in the HIV/AIDS inpatient unit in Shanghai. Patients recruited from November 2014 to February 2015 were in the intervention group and those from October 2013 to February 2014 were in the control group. There were 74 patients in each group. Participants in the intervention group received interventions based on the HIV symptom management guidelines. Overall symptom severity, depression, and quality of life were measured in two groups at baseline, week 4, and week 8. RESULTS: Totally 126 patients completed the research, 65 in the intervention group and 61 in the control group. The total symptom severity scores showed a statistically significant difference between groups across time (P < 0.05). It showed that frequencies of fatigue (36.9% vs. 44.3%), fever (6.2% vs. 11.5%), loss in weight (9.2% vs. 16.4%), mouth ulcers (12.3% vs. 16.4%), headaches (9.2% vs. 19.7%) and depression (F = 1.09, P > 0.05) in the intervention group were lower than those in the control group in week 8 without statistical significance. The multilevel growth mixture model indicated a greater increase in the total score of quality of life for the group treated according to the symptom management guidelines (P = 0.04). CONCLUSION: The evidence-based HIV symptom management guidelines can improve a patient's quality of life and relieve negative symptoms. The guidelines can be applied in a similar context to other HIV/AIDS units or clinics.

Disclosing Parental HIV Status to Children in China: Lessons Learned Through an Intervention Study.

For HIV-infected parents, deciding whether and how to disclose their illness to their children is a major stressor. In China, due to significant HIV stigma, disclosure distress is acute. Our objective was to understand HIV-infected parents' concerns regarding disclosure of their HIV status to their children. HIV-infected parents (N = 10) were recruited to attend a three-session nursing intervention. In our post hoc analysis, progress notes from each session were analyzed for themes to illuminate parental decision-making processes. By the end of the intervention, all parents had considered the importance of HIV disclosure and stated that they felt somewhat prepared to disclose. Primary themes included (a) severe stigma experienced by fathers who were sexually active with men, (b) need for both parents to agree on plans for disclosure, and (c) parents' fears about the consequences of disclosure. Parents living with HIV can benefit from nurse-delivered interventions during parental HIV disclosure decision-making.

Nurse-delivered counselling intervention for parental HIV disclosure: results from a pilot randomized controlled trial in China.

OBJECTIVE: The objective of this study was to design and conduct a preliminary evaluation of an intervention to assist parents in decision-making about disclosure of their HIV diagnosis to their children. DESIGN: This was a pilot randomized controlled trial (RCT) with blinded assessment. Participants were randomized to intervention or treatment-as-usual (TAU) arms. SETTING: The study occurred at an outpatient HIV primary care centre in Shanghai, China. PARTICIPANTS: Participants were 20 HIV-positive outpatients with at least one child (13-25 years old) who was unaware of the parent's HIV diagnosis. INTERVENTION: The nurse-delivered intervention involved three, hour-long, individual sessions over 4 weeks. Intervention content comprised family assessment, discussion of advantages and disadvantages of disclosure, psycho-education about cognitive, social and emotional abilities of children at different developmental stages, and disclosure planning and practicing via role-plays. MAIN OUTCOME MEASURE(S): Primary study outcomes for intervention versus TAU arms were self-reported disclosure distress, self-efficacy, and behaviours along a continuum from no disclosure to full disclosure and open communication about HIV. RESULTS: In all cross-sectional (Wald tests) and longitudinal (general estimating equations) analyses, at both postintervention (4 weeks) and follow-up (13 weeks), effects were in the hypothesized directions. Despite the small sample size, most of these between-arm comparisons were statistically significant, with at least one result for each outcome indicating a 'large' effect size. CONCLUSION: Our results suggest that nurses are able to deliver a counselling intervention in a clinic setting with the potential to alleviate parental distress around HIV disclosure to their children. Findings warrant future trials powered for efficacy.

Fatigue and Sleep Disturbance Related to Perceived Stress in Chinese HIV-Positive Individuals: A Mixed Methods Study.

BACKGROUND: Few studies of HIV+ individuals in China have examined the associations between HIV-related stress with sleep disturbance and fatigue, which are common complaints among people living with HIV/AIDS (PLWHA). We carried out this study to examine the relationships among perceived stress, sleep disturbance, and fatigue in PLWHA in China. METHODS: A mixed methods study design was used during data collection in Shanghai, China, from December 2009 to March 2010. Qualitative in-depth interviews were conducted with 19 HIV+ females. Additionally, cross-sectional audio computer-assisted self-interviews (ACASI) were conducted to collect quantitative data from a convenience sample of 107 HIV+ patients (84% were male) including the following scales: 1) Perceived Stress Scale for PLWHA, 2) General Sleep Disturbance Scale, and 3) Fatigue Scale. RESULTS: The major themes that emerged from the in-depth interviews were around life stress with HIV, sleep disturbance, and fatigue. Participants presented varying amounts of stress around worrying about whether to disclose their diagnosis and whether they might transmit the disease to their family. In addition, in the cross-sectional data, 40% of the participants reported clinically significant sleep disturbances (GSDS > 3) with an average of 3 nights of disturbed sleep in the past week (M=2.87, SD=1.21) and moderate fatigue severity (M=5.24, SD=2.27). In mediation analyses, the data suggests that the relationship between perceived stress and fatigue was largely (53%) mediated through sleep disturbance. CONCLUSIONS: Chinese PLWHA described how stress had caused them to become sleepless and fatigued. The quantitative data also demonstrated significant levels of sleep disturbance and fatigue, where were due to perceived stress with HIV disease. A systematic self-management intervention to decrease perceived stress should be designed and implemented in mental health resource-limited settings such as China in order to reduce sleep disturbance and fatigue.