Department of Epidemiology and Health Policy Research, University of Florida, Gainesville, Florida 32604, USA.
J Palliat Med. 2010 Apr;13(4):421-6. doi: 10.1089/jpm.2009.0295.
CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs. OBJECTIVE: To determine how families are impacted and what factors are associated with greater impact. DESIGN: 2008 cross-sectional telephone survey. SETTING: Florida. PATIENTS: Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE: The Impact on Family (IOF) Scale. RESULTS: The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their children's illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family. CONCLUSION: Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.
背景:姑息治疗项目有机会进行干预,为其家庭受到子女疾病影响的父母提供支持性护理。通过了解家庭受到的影响,项目可以完善其服务提供并调查未满足的需求。
目的:确定家庭受到的影响以及哪些因素与更大的影响相关。
设计:2008 年横断面电话调查。
地点:佛罗里达州。
患者:85 名父母,其子女患有生命有限的疾病,并参加了佛罗里达州公共资助的儿科姑息治疗项目。
主要观察指标:家庭影响量表(IOF)。
结果:对调查做出回应的父母中,大多数是白人非西班牙裔(56%)、已婚(54%)、大学毕业(33%),并居住在双亲家庭(60%)。对于 IOF 的 15 个问题中的 11 个,结果表明 50%或以上的父母同意 IOF 上的项目。例如,71%的父母表示,他们的家庭因为子女的疾病不得不放弃一些东西。多变量分析显示,存在抑郁症状与家庭受到更大影响相关。
结论:我们的研究结果强调了在为儿童提供护理时考虑所有家庭成员需求的重要性,以及理解和尝试满足儿科姑息治疗服务可能无法涵盖的家庭成员的需求的重要性。应特别关注有抑郁症状的父母,因为他们可以在儿童的儿科姑息治疗项目中获得支持性护理。
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