A qualitative study on the experiences of family caregivers of children with End Stage Kidney Disease (ESKD).

IF 4.6 Q2 MATERIALS SCIENCE, BIOMATERIALS
Edward Appiah Boateng, Mabel Baaba Bisiw, Rosemary Agyapomah, Isaac Enyemadze, Joana Kyei-Dompim, Samuel Peprah Kumi, Dorothy Serwaa Boakye
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Abstract

Background: Family caregivers, mostly parents, are greatly involved in the care of their children with end stage kidney disease (ESKD) globally. Yet, the experiences of these caregivers and the demands placed on them by the caregiving role have not been explored or documented in Ghana. This study explored how caregiving affects the psychological, physical, social, and spiritual well-being of family caregivers of children with end stage kidney disease (ESKD) in Ghana.

Methods: A phenomenological approach with the purposive sampling technique was used to gather data from 12 family caregivers of children with ESKD at a pediatric renal unit in Ghana. A semi-structured interview guide was constructed based on the constructs of the City of Hope Quality of Life (QoL) Family Caregiver Model and the research objectives. Colaizzi's thematic analysis approach was utilized to analyze data for this study. Themes were organized under the domains of the chosen model, and a new theme outside these domains was also generated.

Results: The majority of the family caregivers experienced anxiety, fear, uncertainty, and hopelessness in response to the children's diagnosis and care. The thought of the possibility of the children dying was deeply traumatizing for our participants. Most participants reported bodily pains and physical ailments because of lifting and caring for the children. Financial constraint was also a key issue for all the family caregivers. Most of them received diverse support from their families and loved ones. Due to the demanding nature of the care, most family caregivers had to change or quit their jobs. They coped with the challenges through prayers, participating in religious activities, and being hopeful in God for healing.

Conclusion: All the family caregivers had their psychological well-being compromised as a result of the challenges they encountered physically, socially, and spiritually. Continuous psychosocial support, funding support, and review of policies on leave for civil workers with children diagnosed with ESKD are urgently required.

关于终末期肾病(ESKD)患儿家庭照顾者经历的定性研究。
背景:在全球范围内,家庭照顾者(主要是父母)在很大程度上参与了对患有终末期肾病(ESKD)的儿童的照顾。然而,加纳尚未探讨或记录这些照顾者的经历以及照顾角色对他们提出的要求。本研究探讨了照料如何影响加纳终末期肾病(ESKD)患儿家庭照料者的心理、生理、社会和精神福祉:方法:采用现象学方法和目的性抽样技术,从加纳一家儿科肾脏病医院的 12 名 ESKD 患儿家庭照顾者那里收集数据。根据 "希望之城 "生活质量(QoL)家庭照顾者模型的结构和研究目标,制定了半结构式访谈指南。本研究采用科莱兹主题分析法对数据进行分析。在所选模式的领域下组织主题,并在这些领域之外产生一个新的主题:结果:大多数家庭照顾者对儿童的诊断和护理都感到焦虑、恐惧、不确定和绝望。一想到孩子可能会死亡,我们的参与者就深受创伤。大多数参与者都报告说,由于抬举和照顾患儿,他们的身体出现了疼痛和病痛。经济拮据也是所有家庭照顾者面临的一个关键问题。他们中的大多数人都得到了家人和亲人的不同支持。由于护理工作要求苛刻,大多数家庭照顾者不得不更换或辞去工作。他们通过祈祷、参加宗教活动和对上帝的治愈充满希望来应对挑战:所有家庭照顾者的心理健康都因他们在身体、社会和精神上遇到的挑战而受到损害。当务之急是提供持续的社会心理支持、资金支持,并对有确诊 ESKD 患儿的公务员的休假政策进行审查。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
ACS Applied Bio Materials
ACS Applied Bio Materials Chemistry-Chemistry (all)
CiteScore
9.40
自引率
2.10%
发文量
464
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