Networks of the World of Life.

IntroductionCare involves unequal relationships between gender, corporal conditions and responsibilities. This is especially sensitive for the participation and socio-community inclusion of people with disabilities and their caregivers.AimTo analyze the perceptions of caregivers regarding the construction of socio-community care for people with disabilities in the south-central Zone of Chile.MethodQualitative study from a situated feminist perspective. Ten semi-structured interviews were conducted with women caregivers of people with disabilities during the years 2021–2022. The interviews were based on qualitative thematic analysis.ResultsThe analysis revealed two central categories and six emerging subcategories: a) The world of the system; a.1) Health and rehabilitation, a.2) Education, a.3) Work, and b) The world of life; b.1) Family, b.2) Neighbors and friends, b.3) Community organizations. Socio-community care is a system of action and links that are woven between “The world of the system” and “The world of life” to sustain existence. They are a provision of support and assistance from public institutions and communities.ConclusionsSocio-community care is built with a lot of effort and exhaustion on the part of the families of people with disabilities, especially by women. Of particular importance is the responsibility and self-organization of communities to meet the needs and care of persons with disabilities. Hence the urgency to develop comprehensive care systems where the State takes greater and better responsibility.引言：照护涉及性别、身体状况与责任之间的不对等关系。这一点对于残疾人及其照护者的参与及社会社区融入而言尤为敏感。 研究目的：分析智利中南部地区残疾人社会社区照护（socio-community care）体系构建相关的照护者认知情况。 研究方法：本研究采用情境化女权主义视角（situated feminist perspective）开展定性研究，于2021至2022年间对10名残疾人女性照护者开展半结构化访谈（semi-structured interviews），访谈分析采用定性主题分析（qualitative thematic analysis）。 研究结果：分析结果显示两大核心类别及六个衍生子类别：a）‘制度体系世界’；a.1）健康与康复，a.2）教育，a.3）就业；b）‘日常生活世界’；b.1）家庭，b.2）邻里与亲友，b.3）社区组织。社会社区照护是在‘制度体系世界’与‘日常生活世界’之间编织而成的行动与联结体系，用以维系个体生存，其支撑力量来自公共机构与社区所提供的支持与帮扶。 研究结论：社会社区照护的构建，离不开残疾人家庭（尤其是女性照护者）付出的大量辛劳与身心耗竭。尤为关键的是，社区需承担起相应责任并开展自我组织，以满足残疾人的需求并为其提供照护。因此，亟待建立健全综合性照护体系，让国家承担起更充分、更完善的主体责任。