Knowlton Amy R
Faculty of Social and Behavioral Sciences, Department of Health Policy and Management, Johns Hopkins School of Hygiene and Public Health, 624 North Broadway, Baltimore, MD 21205, USA.
Soc Sci Med. 2003 Mar;56(6):1307-20. doi: 10.1016/s0277-9536(02)00130-2.
For the impoverished and often stigmatized communities most affected by HIV/AIDS, needs for informal caregiving present tremendous demands on already limited resources. Traditional theoretical frameworks emphasize care needs as driving informal caregiving. The proposed theoretical framework emphasizes microsocial processes that may affect informal caregiving among economically disadvantaged populations. The study examined: (1) network structural factors (homophily) that may affect availability of ties and local sociocultural expression of ties (social roles, behavioral norms) and (2) the role of financial resources in enabling informal caregiving. Low income, African American injection drug using persons living with HIV/AIDS (PLHAs) and their primary HIV supporters were interviewed. Supporters were predominantly female (71%), consanguineal kin (59%) and partners or friends (41%). Compared to the general US population, supporters were disproportionately HIV-infected, drug using, African Americans of poor health and low socioeconomic status. Supporters who perceived their PLHA tie needed informal care, compared to those who perceived no care need, were more than twice as likely to report a history of drug use, functional limitation (IADLs), higher income, and PLHA's financial reliance. Supporters' reported care provision was associated with their financial resources, but not PLHAs' health status. PLHAs' reported care receipt was associated only with their health status.HIV supporters' reported care provision was affected by financial factors, consistent with the proposed theoretical framework, while PLHAs' perceptions of care receipt conformed to traditional "needs"-based frameworks of caregiving. Results suggest that programs are needed to bolster network financial resources of disadvantaged populations affected by HIV to promote and sustain their informal HIV caregiving. Findings may aid in the understanding of informal caregiving as a social process. Network resource-oriented research may allow for ascertainment of community caregiving capacity, and guide the development of interventions to promote HIV caregiving in disadvantaged populations.
对于受艾滋病毒/艾滋病影响最严重的贫困且常常受到污名化的社区而言，非正式照料的需求给本就有限的资源带来了巨大压力。传统理论框架强调照料需求是推动非正式照料的因素。本文提出的理论框架则强调可能影响经济弱势群体中非正式照料的微观社会过程。该研究考察了：（1）可能影响关系可及性以及关系的当地社会文化表现形式（社会角色、行为规范）的网络结构因素（同质性），以及（2）财政资源在促成非正式照料方面的作用。研究对低收入、感染艾滋病毒/艾滋病的非裔美国注射吸毒者及其主要的艾滋病毒照料者进行了访谈。照料者主要为女性（71%）、血缘亲属（59%）以及伴侣或朋友（41%）。与美国普通人群相比，照料者中艾滋病毒感染者、吸毒者、健康状况不佳且社会经济地位较低的非裔美国人比例过高。与那些认为其艾滋病毒感染者不需要非正式照料的照料者相比，那些认为其艾滋病毒感染者需要非正式照料的照料者报告有吸毒史、功能受限（工具性日常生活活动能力）、收入较高以及艾滋病毒感染者存在经济依赖的可能性要高出两倍多。照料者报告的照料提供情况与其财政资源相关，但与艾滋病毒感染者的健康状况无关。艾滋病毒感染者报告的照料接受情况仅与其健康状况相关。艾滋病毒照料者报告的照料提供情况受财政因素影响，这与所提出的理论框架一致，而艾滋病毒感染者对照料接受情况的认知符合传统的基于“需求”的照料框架。结果表明，需要实施相关项目来增强受艾滋病毒影响的弱势群体的网络财政资源，以促进并维持其非正式的艾滋病毒照料。研究结果可能有助于将非正式照料理解为一种社会过程。以网络资源为导向的研究可能有助于确定社区的照料能力，并指导制定干预措施以促进弱势群体中的艾滋病毒照料。
