Remedios Cheryl, Willenberg Lisa, Zordan Rachel, Murphy Andrea, Hessel Gail, Philip Jennifer
Centre for Palliative Care, St Vincent's Hospital, Fitzroy, VIC, Australia
Centre for Palliative Care, St Vincent's Hospital, Fitzroy, VIC, Australia.
Palliat Med. 2015 Mar;29(3):223-30. doi: 10.1177/0269216314560008. Epub 2015 Jan 29.
Respite services are recommended as an important support for caregivers of children with life-threatening conditions. However, the benefits of respite have not been convincingly demonstrated through quantitative research.
To determine the impact of out-of home respite care on levels of fatigue, psychological adjustment, quality of life and relationship satisfaction among caregivers of children with life-threatening conditions.
A mixed-methods, pre-test and post-test study
SETTING/PARTICIPANTS: A consecutive sample of 58 parental caregivers whose children were admitted to a children's hospice for out-of-home respite over an average of 4 days.
Caregivers had below-standard levels of quality of life compared to normative populations. Paired t-tests demonstrated that caregivers' average psychological adjustment scores significantly improved from pre-respite (mean = 13.9, standard error = 0.71) to post-respite (mean = 10.7, standard error = 1); p < 0.001, 95% confidence interval: 1.25-5.11). Furthermore, caregivers' average fatigue scores significantly improved from pre-respite (mean = 14.3, standard error = 0.85) to post-respite (mean = 10.9, standard error = 1.01; p < 0.001, 95% confidence interval: 1.69-7.94), and caregivers' average mental health quality of life scores significantly improved from pre-respite (mean = 44.2, standard error = 1.8) to post-respite (mean = 49.1, standard error = 1.6; p < 0.01, 95% confidence interval: -9.56 to 0.36). Qualitative data showed caregivers sought respite for relief from intensive care provision and believed this was essential to their well-being.
Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.
喘息服务被推荐为对患有危及生命疾病儿童的照料者的一项重要支持。然而，喘息服务的益处尚未通过定量研究得到令人信服的证明。
确定院外喘息护理对患有危及生命疾病儿童的照料者的疲劳程度、心理调适、生活质量和关系满意度的影响。
一项混合方法的前测和后测研究
设置/参与者：连续抽取58名家长照料者作为样本，他们的孩子入住儿童临终关怀院接受平均为期4天的院外喘息护理。
与正常人群相比，照料者的生活质量低于标准水平。配对t检验表明，照料者的平均心理调适得分从喘息护理前（均值 = 13.9，标准误 = 0.71）到喘息护理后（均值 = 10.7，标准误 = 1）显著改善；p < 0.001，95%置信区间：1.25 - 5.11）。此外，照料者的平均疲劳得分从喘息护理前（均值 = 14.3，标准误 = 0.85）到喘息护理后（均值 = 10.9，标准误 = 1.01；p < 0.001，95%置信区间：1.69 - 7.94）显著改善，并且照料者的平均心理健康生活质量得分从喘息护理前（均值 = 44.2，标准误 = 1.8）到喘息护理后（均值 = 49.1，标准误 = 1.6；p < 0.01，95%置信区间： - 9.56至0.36）显著改善。定性数据显示，照料者寻求喘息护理以从密集护理中解脱出来，并认为这对他们的幸福至关重要。
研究结果表明院外喘息护理在改善患有危及生命疾病儿童的照料者的疲劳和心理调适方面是有效的。研究结果为儿科姑息治疗的服务提供和未来研究工作提供了信息。
