Baumgardner D J, Burtea E D
Department of Family Medicine, University of Wisconsin Medical School, St. Luke's Family Practice Residency Program, Milwaukee 53215, USA.
WMJ. 1998 Sep;97(8):51-5.
This qualitative study explored quality-of-life (QL) issues among Wisconsin's technology-dependent children and their families.
Five semi-structured focus groups were held with parents, siblings and health care workers of home-dwelling children dependent upon technology such as tracheostomy, ventilator support and gastrostomy tube feedings. Focus group transcripts were analyzed using an editing style format, with each author as an independent analyst.
QL for the child was seen as a relative term, defined within the family, dependent upon the availability of services; and expressed in terms of physical comfort and function, and integration of the child into the family and community. Positive QL aspects for families include: growth as individuals, intrinsic rewards from the child and appreciation of others with handicaps. Negative impacts on family QL include: physical and mental anguish (e.g., exhaustion, suicidal ideation, back injuries), inhibitions of normal family functions, and isolation. Home nursing was highly valued despite lack of privacy. A number of ethical issues emerged including ineffective communication and lack of QL discussions during the child's acute treatment, end-of-life decisions, and potential cuts in Medicaid services. The latter issue prompted fear of poverty and divorce among siblings.
Technology appears to exceed the sociological and ethical components of the care of these children, and QL is defined in terms of physical comfort, functional status, adequate services, and family/community integration. Parents assume an ambiguous medical role with their child, and need respite care and advocacy from their health care team.
这项定性研究探讨了威斯康星州依赖技术的儿童及其家庭的生活质量（QL）问题。
与家中依赖气管切开术、呼吸机支持和胃造瘘管喂养等技术的儿童的父母、兄弟姐妹及医护人员举行了五次半结构化焦点小组讨论。焦点小组讨论记录采用编辑风格格式进行分析，每位作者作为独立分析师。
儿童的生活质量被视为一个相对概念，在家庭内部定义，取决于服务的可获得性；并体现在身体舒适度和功能、儿童融入家庭和社区等方面。家庭生活质量的积极方面包括：个人成长、来自孩子的内在回报以及对其他残疾人士的欣赏。对家庭生活质量的负面影响包括：身心痛苦（如疲惫、自杀念头、背部受伤）、正常家庭功能的受限以及孤立。尽管缺乏隐私，家庭护理仍受到高度重视。出现了一些伦理问题，包括在儿童急性治疗期间沟通不畅和缺乏生活质量讨论、临终决策以及医疗补助服务可能的削减。后一个问题引发了兄弟姐妹对贫困和家庭破裂的担忧。
技术似乎超出了这些儿童护理的社会学和伦理范畴，生活质量是根据身体舒适度、功能状态、充足的服务以及家庭/社区融合来定义的。父母在照顾孩子方面承担着模糊的医疗角色，需要医护团队提供临时护理和支持。
