Heerings Marjolijn, van de Bovenkamp Hester, Cardol Mieke, Bal Roland
Erasmus School of Health Policy & Management, Erasmus University Rotterdam, The Netherlands.
Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.
Disabil Soc. 2022 Jun 22;39(3):743-766. doi: 10.1080/09687599.2022.2087490. eCollection 2024.
Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users' experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users ( = 20), experts-by-experience ( = 8), family members ( = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden.
社区住房服务采用康复、以康复为导向的护理和以人为本的规划等护理模式,以提高有智力或精神残疾的服务使用者的生活质量。然而,这些护理模式的实施和实践方式可能会对服务使用者的服务体验产生负面影响,因为他们的复杂需求未得到满足。在本文中,我们通过构建支持负担的反叙事来概念化这些体验。为此,我们借鉴了治疗负担理论。我们在荷兰的一个社区服务组织中进行了人种志实地研究。这包括参与观察(84小时)、对服务使用者(n = 20)、有经验的专家(n = 8)、家庭成员(n = 10)的访谈以及摄影发声工作坊。我们的分析确定了四种支持负担:自决负担;重新认同;责任化和重新安置。结果表明,支持负担在很大程度上是一个关系概念:通过他们的支持,专业人员可以加重或减轻负担。