Marcenko M O, Smith L K
Department of Mental Health Sciences, Hahnemann University, Philadelphia, PA 19102-1192.
Soc Work Health Care. 1992;17(1):87-100. doi: 10.1300/J010v17n01_06.
Two urban programs of family-centered case management services were established for families of children with both a developmental disability and a chronic health condition. These are children who present significant caregiving demands due to the long-term and severe nature of their disabilities. Thirty-two mothers were interviewed within the family's first month in the project and reinterviewed approximately one year later. The results indicate that more families received respite care, nursing services, training in the care of the child, educational services and transportation to school at follow-up than had been receiving those services at baseline. However, families still indicated high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy at follow-up. Mothers indicated that program services were helpful in obtaining services, financing, information, support, and advocacy. Although maternal life satisfaction improved with program participation, non-handicapped siblings continued to have difficulties coping. The model employed is described and the practice and policy implications of the findings discussed.
为患有发育障碍和慢性健康问题的儿童家庭设立了两个以家庭为中心的个案管理服务城市项目。这些儿童因其残疾的长期性和严重性而产生了重大的照料需求。在家庭参与项目的第一个月内，对32位母亲进行了访谈，并在大约一年后进行了再次访谈。结果表明，与基线时相比，更多家庭在随访时获得了喘息照顾、护理服务、儿童照料培训、教育服务以及上学交通服务。然而，家庭在随访时仍表示对娱乐活动、生活规划、正规日托、法律服务和言语治疗有很高的服务需求。母亲们表示，项目服务在获取服务、资金、信息、支持和宣传方面很有帮助。尽管母亲的生活满意度随着参与项目而提高，但非残疾兄弟姐妹在应对方面仍存在困难。文中描述了所采用的模式，并讨论了研究结果对实践和政策的影响。
