HIV感染者/AIDS患者的社会支持状况及影响因素分析

目的了解HIV感染者/AIDS患者(PLWHAS)的社会支持现状,并分析相关影响因素。方法采用社会支持评定量表(SSRS)进行社会支持测量,自制调查表收集相关影响因素,采用多元逐步回归方法分析社会支持的影响因素。结果 294名PLWHAS的社会支持平均总分为(27.16±8.04)分,低于常模。社会支持得分随年龄增加而下降(β=-0.119),随文化程度的增加而增加(β=0.108);家庭人均年收入≥3000元者社会支持得分高于<3000元者(β=0.141);无业(β=-0.166)和独居(β=-0.305)是社会支持的危险因素,而与家里人维持良好的关系(β=0.356)和稳定的婚姻(β=0.252)是社会支持的有利因素。结论 PLWHAS的社会支持水平不高,影响因素包括年龄、就业状况、教育程度、收入水平、居住方式及与家里人的关系等。     

Social networks of HIV-positive women and their association with social support and depression symptoms

Social support is important to the mental health and well-being of HIV-positive women. Limited information exists about the specific structure and composition of HIV-positive women’s support networks or associations of these network properties with mental health outcomes. In this pilot study, the authors examine whether support network characteristics were associated with depressive symptoms. Survey and network data were collected from HIV-positive women (N = 46) via a web-based survey and an iPad application in August 2012. Data were analyzed using multivariate linear regression models in SAS. Depressive symptoms were positively associated with a greater number of doctors in a woman’s network; having more HIV-positive network members was associated with less symptom reporting. Women who reported more individuals who could care for them had more family support. Those who reported feeling loved were less likely to report disclosure stigma. This work highlighted that detailed social network data can increase our understanding of social support so as to identify interventions to support the mental health of HIV-positive women. Most significant is the ongoing need for support from peers.     

河南省艾滋病病毒感染者和艾滋病患者社会支持状况研究

目的了解艾滋病病毒感染者和艾滋病患者社会支持状况,探索改善该人群生存环境的途径。方法采用多阶段随机整群抽样方式抽取河南省艾滋病高发的8个县（区）1200人（HIV／AIDS组）进行问卷调查,内容包括社会交往、工作和婚姻受影响情况及受资助情况等。并抽取同生活区非感染者1200人（非HIV／AIDS组）进行对照分析。结果HIV／AIDS组中与亲戚很少来往的比例占47．6％,认为就业受影响很大的占66．1％,生活困难者得到过政府在生活上的帮助的占64．5％。在与亲戚的来往频度、与朋友来往频度、对就业的影响程度、本人或家庭其他人员婚姻受影响程度、受亲朋好友资助、受政府及社会救助、生活困难者是否得到过政府在生活上的帮助等方面,HIV／AIDS组和非HIV／AIDS组之间有统计学差异。结论艾滋病对艾滋病病毒感染者和艾滋病患者的社会交往、家庭和生活有较大影响,需要各个方面给予他们更多的支持。     

深圳市HIV阳性男男性行为者的社会网络和社会支持现况研究

目的 分析HIV阳性男男性行为者(men who have sex with men, MSM)的社会网络特征和社会支持现况及其影响因素,为改善该人群的社会支持提供依据。 方法 收集2017—2018年在深圳市宝安区疾病预防控制中心转介治疗的HIV阳性的MSM的相关资料,采用描述性流行病学方法进行分析。 结果 110例HIV阳性MSM中,报告105个核心社会网络,提名249个网络成员,网络大小(3.37±1.43),网络密度(0.86±0.21)。社会支持总分为(26.42±7.74)分,主观支持得分(15.24±4.88)分,客观支持得分(4.98±2.62)分,支持利用度得分(6.20±1.98)分。方差或t检验分析显示,不同社会网络大小,网络成员的性别、社会关系种类、文化程度构成、性取向构成以及是否和网络成员有性行为的HIV阳性MSM社会支持得分差异有统计学意义。多重线性回归分析显示,网络成员的文化程度构成、性取向构成、关系亲密度和网络成员有性行为是社会支持得分的影响因素。 结论 应尽可能提高HIV阳性MSM的社会支持。     

Online support for transgender people: an analysis of forums and social networks

Transgender people face a range of personal and social conflicts that strongly influence their well‐being. In many cases, the Internet can become the main resource in terms of finding support. The aim of this study was to understand how transgender people give and receive help online. Between 2013 and 2015, 122 online community conversations were collected on Italian forums and Facebook groups involving transgender people, and online interviews were conducted with 16 users of these communities. A qualitative content analysis was conducted by using the software package, NVivo10. The main categories that emerged were: motivations to join an online community, online help, differences between online and offline interactions, status, conflicts and professional help. Results indicate that participation in online communities often derives from the users’ need for help. This help can be given by peers who have had similar experiences, and by professionals who participate in the discussions as moderator. The need to test one's own identity, to compare oneself with others and to share one's personal experiences made online communities at risk of exposing users to invalidation and transphobic messages. Administrators and moderators try to ensure the safety of users, and suggest that they ask for professional help offline and/or online when over‐specific medical advice was sought. This study confirms that transgender people might find benefit from an online platform of help and support and might minimise distance problems, increase financial convenience and foster disinhibition.     

冠心病患者领悟社会支持与实际社会支持调查

目的了解冠心病患者领悟社会支持和实际社会支持情况。方法对宁夏回族自治区3所城市10家综合性医院心内科的冠心病患者503人,采用领悟社会支持量表(PSSS)和社会支持评定量表(SSRS)进行调查。结果冠心病患者实际社会支持总分(39.94±7.31)分、客观支持为(8.86±2.81)分、对支持的利用度为(6.87±2.04)分;均低于全国常模(均P0.01);大部分冠心病患者实际社会支持为(69.7%),有76.0%的冠心病患者领悟社会支持系统正常,领悟社会支持和实际社会支持呈正相关。结论冠心病患者领悟社会支持、实际社会支持程度不高,应引起重视。     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

Service use and needs of people with motor neurone disease and their carers in Scotland

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.     

Volunteer peer support and befriending for carers of people living with dementia: An exploration of volunteers’ experiences

With ageing populations and greater reliance on the voluntary sector, the number of volunteer‐led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers. Using in‐depth semi‐structured interviews with 10 volunteer peer supporters and befrienders, this exploratory study investigated volunteers’ experiences of delivering the support, the types of relationships they form with carers and their perceptions of its impact upon them and on carers. Data were analysed using framework analysis. Findings showed that volunteers benefitted from their role due to the ‘two‐way’ flow of support. Experiential similarity and having common interests with carers were considered important to the development of mutually beneficial relationships. Volunteers perceived that carers gained emotional and social support, which in turn improved the carers’ coping ability. Being able to see positive changes to carers’ lives was important for volunteers to gain enjoyment and satisfaction from their role. However, volunteers also identified challenges with their role, such as dealing with carers’ emotions. Future research should investigate ways of reducing potential burden on volunteers and explore the impact of volunteering specifically on former carers of people with dementia.     

Sociodemographic and substance use characteristics associated with typologies and composition of social support networks among youth experiencing homelessness in Los Angeles,USA

Youth experiencing homelessness are a vulnerable population with increased behavioural health risks. Social networks are a consistent correlate of youths’ substance use behaviours. However, less is known about the reciprocal relationships among these constructs. This study classified youth experiencing homelessness according to their social support network type (e.g. instrumental, emotional, service) and composition (e.g. family, peers, service staff) and linked their membership in these social network classes to sociodemographic and substance use characteristics. Four waves of cross‐sectional data were collected between October 2011 and June 2013 from youth experiencing homelessness, ages 14–29, at three drop‐in centres in Los Angeles, CA (N = 1,046). This study employed latent class analysis to identify subgroups of youth experiencing homelessness according to the type and composition of their social support networks. Multinomial logistic regression analyses were then conducted to identify the sociodemographic and substance use characteristics associated with social support network class membership. Five latent classes of youths’ social support networks were identified: (a) high staff emotional and service support; (b) high home‐based peer and family emotional, service and instrumental support; (c) moderate street‐ and home‐based peer emotional support; (d) low or no support and (e) high home‐based peer and family emotional and instrumental support. Multinomial logistic regression models indicated that race/ethnicity, gender, sexual orientation, literal homelessness, former foster care experience, depression, heroin and marijuana use were significant correlates of social support network class membership. Results indicate distinct classes of social support networks among youth experiencing homelessness, with certain sociodemographic and substance use characteristics implicated in youths’ social networks.     

Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method—Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.     

罕见病患者社会支持、社会保障与就医选择行为的关联研究

本文基于安德森卫生服务利用行为模型,构建罕见病患者就医行为影响因素的理论分析框架,利用2016年中国罕见病患者生存状况调查数据,重点考察社会支持、社会保障因素与罕见病患者就医选择行为的关联.实证分析结果表明,非正式社会支持与患者的卫生服务利用、就医选择行为呈显著正相关,社会支持水平越高,患者的就诊率、选择县级及以上医院...     

Social networks and social support among ball-attending African American men who have sex with men and transgender women are associated with HIV-related outcomes

The House Ball Community (HBC) is an understudied network of African American men who have sex with men and transgender women, who join family-like houses that compete in elaborate balls in cities across the United States. From 2011 to 2012, we surveyed 274 recent attendees of balls in the San Francisco Bay Area, focusing on social networks, social support, and HIV-related behaviours. Participants with a high percentage of alters who were supportive of HIV testing were significantly more likely to have tested in the past six months (p?=?.02), and less likely to have engaged in unprotected anal intercourse (UAI) in the past three months (p?=?.003). Multivariate regression analyses of social network characteristics, and social support, revealed that testing in the past six months was significantly associated with social support for safer sex, instrumental social support, and age. Similarly, UAI in the past three months was significantly associated with social support for safer sex, homophily based on sexual identity and HIV status. HIV-related social support provided through the HBC networks was correlated with recent HIV testing and reduced UAI. Approaches utilising networks within alternative kinship systems, may increase HIV-related social support and improve HIV-related outcomes.     

HIV/AIDS病人生活质量及社会支持调查

目的 了解皖北农村地区人类免疫缺陷病毒（HIV）感染者／艾滋病（AIDS）病人的生活质量和社会支持现状，分析其相关的影响因素。方法 通过典型抽样法采用一般情况问卷、感染史本底资料调查表、生活质量综合评定问卷（GQOLI-74）和社会支持评定量表（SSS）对85名HIV感染者／AIDS病人进行调查。采用单因素方差和多元线性回归方法对调查结果进行分析。结果 单因素分析显示，不同性别、不同文化程度的HIV感染者／AIDS病人GQOLI-74总分差异有统计学意义（P〈0．05）；不同乡镇的HIV感染者／AIDS病人SSS总分差异有统计学意义（P〈0．05）。多元线性回归分析结果表明，负性生活事件是影响HIV感染者／AIDS病人社会支持的不利因素。而好的邻里关系、烦恼诉说是影响HIV感染者／AIDS病人生活质量的有利因素。结论 诸多因素影响皖北农村地区HIV感染者／AIDS病人的生活质量和社会支持，农村应加强艾滋病社区关爱、社会支持工作，建立以家庭、邻里为依托的社区关爱模式。     

流动儿童社会支持和社会融合对社会资本与生活满意感的链式中介作用

目的 分析流动儿童社会资本影响生活满意感的内在机制。方法 采用自陈问卷调查1 229名流动儿童,通过bootstrap法考察了社会支持和社会融合在社会资本与生活满意感关系中的中介作用。结果 1)社会支持(effect=0.19,60.55%)、社会融合(effect=0.05,16.51%)分别在社会资本与生活满意感之间起显著的中介作用;2)社会支持和社会融合在社会资本与生活满意感的影响中起链式中介作用。结论 流动儿童社会资本通过社会支持和社会融合的链式中介作用影响生活满意感,社会支持的中介效果比社会融合的中介效果强。     

Loneliness and social support of older people living alone in a county of Shanghai,China

China has an ageing population with the number of older people living alone increasing. Living alone may increase the risk of loneliness of older people, especially for those in China where collectivism and filial piety are emphasised. Social support may fill the need for social contacts, thereby alleviating loneliness. However, little is known about loneliness and social support of older people living alone in China. This study investigated loneliness and social support of older people living alone, by conducting a cross‐sectional questionnaire survey with a stratified random cluster sample of 521 community‐dwelling older people living alone in a county of Shanghai. Data were collected from November 2011 to March 2012. The instruments used included the UCLA Loneliness Scale version 3 and the Social Support Rate Scale. The participants reported a moderate level of loneliness. Their overall social support level was low compared with the Chinese norm. Children were the major source of objective and subjective support. Of the participants, 53.9% (n = 281) and 47.6% (n = 248) asked for help and confided when they were in trouble, but 84.1% (n = 438) never or rarely attended social activities. The level of loneliness and social support differed among the participants with different sociodemographic characteristics. There were negative correlations between loneliness and overall social support and its three dimensions. The findings suggest that there is a need to provide more social support to older people living alone to decrease their feelings of loneliness. Potential interventions include encouraging more frequent contacts from children, the development of one‐to‐one ‘befriending’ and group activity programmes together with identification of vulnerable subgroups.     

Young people supporting parents with mental health problems: experiences of assessment and support

The explosion of interest in young people as carers over the last decade and a half conceals the fact that there are still no reliable estimates of the number of young people with caregiving responsibilities. This is even more problematic in circumstances where the 'looked after' person has a mental health problem. In this study, we reflect on what can be done to identify, assess and support young people in these circumstances. We draw on selected findings from a study that has been examining the constituents of good assessment practice in work with family carers supporting relatives with mental health problems. The study embraces different carer groups but this paper concentrates on the experiences of young carers at one study site where Barnardo's and partner organisations had developed a joint initiative targeting young people who are looking after parents and relatives with mental health problems. Following a review of the literature about young people as carers, the paper describes how Barnardo's worked to support them through its young carers projects. Based on face-to-face interviews with the young people (N = 10) caring for a mother with mental health problems, the main part of the paper provides an account of how they talk about, make sense of and evaluate the support they have received through this combined initiative. The findings underscore the value of one particular young carers project, and provide clues about what lessons may be transferable to other similar projects.