Institute of Health Sciences, Universidade Católica Portuguesa, Lisbon, Portugal.
Polytechnic Institute of Leiria, Superior School of Health, Leiria, Portugal.
J Spec Pediatr Nurs. 2021 Jul;26(3):e12325. doi: 10.1111/jspn.12325. Epub 2021 Jan 25.
The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters.
A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed.
Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope.
To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.
本定性描述研究旨在探讨接受治疗性信件的患有复杂慢性疾病(CCC)儿童的父母的希望体验。
从葡萄牙一家公立医院的儿科姑息治疗病房中,选择了 10 名患有 CCC 的住院儿童的父母作为目的样本。对每位参与者进行了人口统计学表格和录音的半结构化面对面访谈,以探讨希望的经历、过程和意义,并描述接受儿科姑息治疗的儿童父母如何看待接受治疗性信件的有用性。访谈被逐字转录,通过主题分析,完成了系统的数据分析方法。
数据分析产生了三个主要主题,包括对未来的信任;增强希望;和希望时刻。研究结果突出了治疗性信件的积极影响,包括支持父母的希望,促进个人内在的强化,认可父母的技能,以及在住院期间提高自我效能感。这些主题和相关的子主题为现有文献增添了价值,并强调了需要提供支持性的姑息护理,以促进父母的希望。
为了优化支持父母希望的价值,可以在诊断时、庆祝时以及学习日常育儿困难任务时,提供治疗性信件。进一步的研究可以为基于希望的正式干预措施的制定提供信息,从而增强患有 CCC 儿童的父母照顾者的幸福感。