儿科姑息关怀的影响感知:照护者的视角。

IF 1 Q3 PEDIATRICS Minerva Pediatrics Pub Date : 2024-10-07 DOI:10.23736/S2724-5276.24.07593-1
Alexandra L Ribeiro, Madalena V Hafe, Joana Torgal, Inês F Azevedo, Paula M Guerra
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引用次数: 0

摘要

背景:患有复杂慢性疾病(CCD)或局限性生命疾病(LLC)的儿童的照顾者承受着更大的压力。了解他们的顾虑对于提供有效支持至关重要,尤其是在儿科姑息治疗(PPC)中,同情支持至关重要。随着葡萄牙姑息治疗服务的大幅增长,评估护理在解决这些问题和适应家长不断变化的需求方面的有效性势在必行。本研究旨在从护理人员的角度了解儿童护理服务的影响:参与研究的人员包括患有 CDD 或 LLC 的儿童及其护理人员,并由 PPC 小组进行跟踪。住院儿童除外。我们的混合方法研究包括使用定量数据分析社会人口学特征和评估照顾者及儿童的幸福感,并通过半结构式访谈获得的定性数据探讨照顾者关注的问题和儿童方案规划的影响:我们纳入了 43 名儿童和照顾者。照顾者(90.6% 为母亲;平均年龄 40 岁)经常感到疲劳(90.7%),但很少感到精疲力竭(67.4%)。睡眠障碍(58.1%)是儿童最常感觉到的症状。照顾者的担忧分为七类。在照护者认为 PPC 整合会产生影响的五个类别中,95.3% 的照护者优先考虑加强与医护专业人员的联系。加强支持以促进护理人员休息和早期转诊是改善儿童疾病预防控制的主要建议:PPC似乎能有效缓解家长的主要担忧,突出了早期转诊的重要性。实施为护理人员提供喘息机会和对这些儿童进行更密切监测的策略,已成为改善儿童-家庭这一固有的相互交织关系的生活质量的当务之急。
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Perceived impact of pediatric palliative care: caregiver's perspective.

Background: Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective.

Methods: Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews.

Results: We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC.

Conclusions: The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

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