喀拉拉邦患有复杂慢性病儿童的初级护理人员的担忧:定性分析

IF 1.1 Q4 HEALTH CARE SCIENCES & SERVICES
Sajida Abdulla, Hariprasad Pallippurath Gopalakrishna Pillai, Reshmi Ramachandran
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引用次数: 0

摘要

探索主要照护者与慢性病儿童(CIC)打交道的经验数据,有助于儿科医生发现儿科姑息关怀中尚未满足的需求,了解他们最初的担忧而不是假定的需求,从而提高关怀质量。在 2021 年 7 月 1 日至 2022 年 2 月 28 日期间,喀拉拉邦一所政府医学院的儿科部门收治了 25 名年龄小于 13 岁、患有非恶性局限生命疾病的儿童,他们的主要护理人员接受了深入访谈,以分析他们最担心的问题。所确定的主要专题包括医疗问题、未满足的需求、护理人员的健康问题以及社会和经济问题。在医疗问题中,发作控制不佳和感染褥疮、患者和护理人员睡眠不足以及患者个人卫生难以保持是主要问题。几乎所有社区儿童的家长都表示,他们对尿布的需求超过了对其他材料或设备的需求。产妇抑郁是护理人员的主要健康问题。由于外围医疗中心没有抗癫痫药物,导致患者缺药,并为前往三级医疗中心购买药物花费过多。照顾者报告说,当他们最终意识到不同的医疗系统给了他们治愈疾病的虚假希望时,他们感到非常沮丧。与医疗问题相关的最棘手问题是突破性癫痫发作和褥疮感染。据报告,最重要的物质困难是尿布需求。在提供综合姑息关怀的同时,还必须识别和解决护理人员的问题,如睡眠不足和产妇抑郁。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis
Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Hence, this study aims to identify and describe the primary concerns and challenges faced by caregivers of children with complex chronic conditions in a tertiary care hospital in Kerala. Primary caregivers of 25 children aged <13 years with non-malignant life-limiting illnesses, admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022, underwent in-depth interviews to analyse their most worrisome issues. Thematic analysis was the method chosen for qualitative data analysis. The main themes identified were medical issues, unmet needs, caregiver health issues, and social and financial issues. Among the medical issues, poor seizure control and infected bedsores, sleep deprivation in both patient as well as caregivers, and difficulty in maintaining the personal hygiene of patients were the major issues. Parents of almost all the CICs reported that they required diapers more than any other material or device. Maternal depression was the major caregiver health issue. The unavailability of antiepileptic drugs in peripheral health centres resulted in missing doses and undue expenses for travel to tertiary centres to obtain the same. Caregivers reported their dismay when they finally realised that they were given false hopes of a cure by different systems of medicine. The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most problematic issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper needs. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.
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来源期刊
Indian Journal of Palliative Care
Indian Journal of Palliative Care HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.30
自引率
0.00%
发文量
57
期刊介绍: Welcome to the website of the Indian Journal of Palliative Care. You have free full text access to recent issues of the journal. The links connect you to •guidelines and systematic reviews in palliative care and oncology •a directory of palliative care programmes in India and IAPC membership •Palliative Care Formulary, book reviews and other educational material •guidance on statistical tests and medical writing.
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