Ribeiro Alexandra L, Hafe Madalena V, Torgal Joana, Azevedo Inês F, Guerra Paula M
Department of Pediatrics, University Hospital Center of São João, Porto, Portugal -
Department of Pediatrics, University Hospital Center of São João, Porto, Portugal.
Minerva Pediatr (Torino). 2024 Oct 7. doi: 10.23736/S2724-5276.24.07593-1.
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.
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.
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.
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.
患有复杂慢性病（CCD）或生命有限疾病（LLC）儿童的照料者承受着更大的压力。了解他们的担忧对于提供有效的支持至关重要，尤其是在儿科姑息治疗（PPC）中，同情性支持至关重要。在葡萄牙PPC服务大幅增长的情况下，评估护理在解决这些担忧方面的有效性以及适应父母不断变化的需求势在必行。本研究的目的是从照料者的角度了解PPC的影响。
参与者包括患有CDD或LLC的儿童及其照料者，由PPC团队进行跟踪。机构照料的儿童被排除在外。我们的混合方法研究包括分析社会人口学特征，并使用定量数据评估照料者和儿童的幸福感，通过从半结构化访谈中获得的定性数据探索照料者的担忧以及PPC的影响。
我们纳入了43名儿童及其照料者。照料者（90.6%为母亲；平均年龄40岁）经常感到疲劳（90.7%），尽管他们很少感到精疲力竭（67.4%）。睡眠障碍（58.1%）是儿童最常出现的症状。照料者的担忧出现了七个类别。在照料者认为PPC整合产生影响的五个类别中，95.3%的人将加强与医疗专业人员的联系列为优先事项。增加支持以促进照料者休息和早期转诊成为改善PPC的主要建议。
PPC似乎在减轻父母的主要担忧方面有效，突出了早期转诊的至关重要性。实施为照料者提供喘息机会的策略以及对这些儿童进行更密切的监测，成为改善这个内在相互交织的二元组（儿童-家庭单位）生活质量的优先事项。
