Users’ Continued Usage of Online Healthcare Virtual Communities: An Empirical Investigation in the Context of HIV Support Communities

This study uses data from an online HIV/AIDS health support virtual community to examine whether users’ emotional states and the social support they receive influence their continued usage. We adopt grief theory to conceptualize the negative emotions that people living with HIV/AIDS could experience. Linguistic analysis is used to measure the emotional states of the users and the informational and emotional support that they receive. Results show that users showing a higher level of disbelief and yearning are more likely to leave the community while those with a high level of anger and depression are more likely to stay on. Users who receive more informational support are more likely to leave once they have obtained the information they sought, but those who receive more emotional support are more likely to stay on. The findings of this study can help us better understand users’ support seeking behavior in online support VCs

The miscarriage circle of care:towards leveraging online spaces for social support

BACKGROUND: Lack of social support during and after miscarriage can greatly affect mental wellbeing. With miscarriages being a common experience, there remains a discrepancy in the social support received after a pregnancy is lost. METHOD: 42 people who had experienced at least one miscarriage took part in an Asynchronous Remote Community (ARC) study. The study involved 16 activities (discussions, creative tasks, and surveys) in two closed, secret Facebook groups over eight weeks. Descriptive statistics were used to analyse quantitative data, and content analysis was used for qualitative data. RESULTS: There were two main miscarriage care networks, formal (health care providers) and informal (friends, family, work colleagues). The formal care network was the most trusted informational support source, while the informal care network was the main source of tangible support. However, often, participants’ care networks were unable to provide sufficient informational, emotional, esteem, and network support. Peers who also had experienced miscarriage played a crucial role in addressing these gaps in social support. Technology use varied greatly, with smartphone use as the only common denominator. While there was a range of online support sources, participants tended to focus on only a few, and there was no single common preferred source. DISCUSSION: We propose a Miscarriage Circle of Care Model (MCCM), with peer advisors playing a central role in improving communication channels and social support provision. We show how the MCCM can be used to identify gaps in service provision and opportunities where technology can be leveraged to fill those gaps

Key Topics on End-of-Life Care for African Americans

Racial classifications of human populations are politically and socially determined. There is no biological or genetic basis for these racial classifications. Health behaviors may be influenced by culture and poverty. Disparities in health outcomes, sometimes resulting in higher mortality rates for African-Americans appear to influence end of life decision-making attitudes and behaviors. To improve the quality of end of life care in African-American communities, health care professionals must better understand and work to eliminate disparities in health care, increase their own skills, knowledge and confidence in palliative and hospice care, and improve awareness of the benefits and values of hospice and palliative care in their patients and families

Health Promot Int

Mental health problems, including anxiety and depression, are a common comorbidity among gay, bisexual and other men who have sex with men (GBMSM) living with HIV. Informed by social support theory, health navigation is a strengths-based intervention that has been demonstrated to improve HIV care outcomes. The purpose of this study was to explore how health navigation influences the mental health of GBMSM living with HIV. We analyzed longitudinal qualitative in-depth interviews conducted with GBMSM (n = 29) in a 12-month multi-component intervention to improve HIV care outcomes, including health navigation. We used narrative and thematic analytic approaches to identify salient themes, including if and how themes changed over time. Participants described that navigator support helped them maintain good mental health, prevent crises and respond to crises. Navigator support included providing motivational messaging, facilitating participants' control over their health and improving access to care, which aided with supporting mental health. Navigators also responded to acute crises by providing guidance for those newly diagnosed with HIV and support for those experiencing critical life events. Participants emphasized the importance of feeling heard and valued by their navigators and gaining hope for the future as key to their wellbeing. In conclusion, health navigation may be an effective intervention for promoting mental health among GBMSM living with HIV. Additional research is needed to examine mediating pathways between navigation and mental health, including informational support, or if navigator support moderates the relationship between stressors and mental health outcomes for GBMSM.U01GH001003/ACL/ACL HHSUnited States/D43 TW009343/TW/FIC NIH HHSUnited States/1U01GH001003-05/Cooperative Agreement with the Universidad del Valle de Guatemala/U01 GH001003/GH/CGH CDC HHSUnited States/D43TW009343/Fogarty International Center of the National Institutes of Health/University of California Global Health Institute/2023-05-28T00:00:00Z34849870PMC923317811624vault:4289

Support Sought and Received Online for Miscarriage: Content Analysis of a Facebook Support Group

This item is only available electronically.Miscarriage is the loss of a baby prior to 20 weeks’ gestation and is the outcome of one in four confirmed pregnancies. It can be a source of significant psychological distress. Women who miscarry frequently report inadequate support from family and health professionals, turning to online support groups to meet their needs. However, there is limited knowledge about the categories of support that women who experience miscarriage seek and receive online. The present study employed content analysis to examine 270 opening posts and 3489 responding comments within an ‘open’ Facebook support group for miscarriage. Posts and comments were coded into five categories of social support in relation to Cutrona and Suhr’s (1992) framework. Consistent with the literature on health-related online support groups, Informational Support was most commonly sought. In response to posts seeking support, Emotional Support was predominantly offered, followed by Informational Support and Esteem Support. Network Support and Tangible Assistance were least commonly offered. When seeking one support category, women usually received what they were seeking. The present study provides valuable insight into the benefits of online support groups as a solution to the sense of isolation commonly reported amongst those who have miscarried.Thesis (B.PsychSc(Hons)) -- University of Adelaide, School of Psychology, 201

Psychology and people living with HIV/AIDS: a critical review of the literature

The implications of living with Human Immunodeficiency Virus (HIV) have evolved over the last 30 years. The view of HIV infection as an imminent death sentence has largely disappeared. From a practical perspective, HIV positive status is now medically treated as a chronic illness rather than as a terminal diagnosis. In response, the focus of psychological research and therapeutic practice has evolved to reflect the changing implications of living with HIV. This study documents how psychological literature regarding people living with HIV has changed over the course of the epidemic

A comprehensive review of the literature surrounding the adolescent experience of a parent's amyotrophic lateral sclerosis or familial amyotrophic lateral sclerosis diagnosis

Master's Project (M.Ed.) University of Alaska Fairbanks, 2016Amyotrophic lateral sclerosis (ALS) is a neuro-muscular disease causing progressive paralysis and eventual death of the patient. Adolescent children who have a parent with ALS or other terminal illnesses have ability to comprehend the course of the disease's processes, death and the suffering of others, which often leads to the teen experiencing existential issues including loneliness, meaninglessness, a lack of personal freedom or responsibility, and a fear of death. The following research paper provides a thorough review of the literature surrounding the effects of a parental ALS diagnosis on adolescent development, existential concerns and grief response. Suggestions for resolving existential concerns and grief are presented. The knowledge gained from the literature review was used to create a web-based resource for adolescent children of ALS patients. The application and product portions of this paper contain a thorough description of the web-based resource, the information it contains, and ways that it can be useful to adolescents and members of their support system

Predictors of Emotional Adjustment and Posttraumatic Growth Following Bereavement in the United States and China

abstract: Using an integrated perspective of the Grief Work Hypothesis and Posttraumatic Growth Theory, this study was designed to contribute to the sparse existing cross-cultural research by examining and comparing individuals' emotional adjustment and posttraumatic growth in the United States (US) and China. Another main goal was to unfold the predictive effects of different dimensions of locus of control, coping strategies and social support on the outcomes and further, to explore cultural differences in the underlying mechanisms. Web-based survey was disseminated and administered in the US and China. One thousand and seventy-eight participants completed the survey and met the criteria such that they were eighteen years old or older and experienced death of a loved one six to thirty-six months ago. As expected, US participants experienced higher levels of subjective well-being, lower levels of complicated grief and posttraumatic growth than Chinese participants. They also reported higher external yet lower internal locus of control, less frequent use of active and avoidance coping, and less informational support and negative social interactions than their Chinese counterparts. No difference in emotional support was evidenced between the two cultures. After controlling for demographic, loss-related information and the impact of post-bereavement life events, hierarchical regression analyses revealed that culture, external locus of control, avoidance coping and negative social interactions were unique predictors of complicated grief. Furthermore, the relation between external locus of control and complicated grief was weaker for US participants compared to that for Chinese participants. Culture, external and internal locus of control, active and avoidance coping, and negative social interactions significantly predicted individuals' subjective well-being after the loss. Additionally, culture, internal locus of control, active and avoidance coping, informational support, and negative social interactions were identified as unique predictors of posttraumatic growth. Specifically, an interaction effect of avoidance coping x culture emerged such that avoidance coping significantly predicted posttraumatic growth only for US participants. This study extracted the underlying mechanisms of predicting individuals' emotional adjustment and personal growth following bereavement. The influence of culture was also highlighted. Application of existing theories to the Chinese culture and clinical implications of the current study were discussed.Dissertation/ThesisM.S. Psychology 201

Positive Women: Emotion, Memory, and the Power of Narrative in Women Organized to Respond to Life-Threatening Diseases, 1991-2020

Note: In lieu of an abstract, this is the article\u27s first paragraph. By 1992, the AIDS epidemic in the United States had reached seemingly catastrophic proportions. Over ten years after the first published report of AIDS-related lung infection, the number of AIDS cases in the United States far exceeded 100,000. It would be four years until the FDA approval of the first protease inhibitor. Over ten thousand women had been diagnosed with the disease, and experts expected over ninety thousand more were already infected. The disease, lacking effective treatment, increasingly struck women and people of color in the early 1990s; cases rose 151 percent among women and by 105 percent among men in 1993. Without a cure in sight, women with HIV did not have much tangible reason for optimism. Nonetheless, in January 1992 Debra McCarthy cast her HIV diagnosis as the turning point in her journey towards personal fulfillment. “Even though I may be HIV positive,” she wrote, “I am more healed in my life than I ever have been.