Doumit Myrna A A, Rahi Amal C, Saab Raya, Majdalani Marianne
Alice Ramez Chagoury School of Nursing, Lebanese American University, Byblos, Lebanon.
Department of Pediatrics and Adolescent Medicine, American University of Beirut Medical Center, Beirut, Lebanon.
Eur J Oncol Nurs. 2019 Apr;39:21-27. doi: 10.1016/j.ejon.2018.12.009. Epub 2019 Jan 2.
Family caregivers of children with cancer face emotional, psychological, and spiritual challenges coping with their child's illness. For ensuring comprehensive multidisciplinary pediatric care, there is a need to understand and define what spirituality means for them in relation to their child's illness. The purpose of this study is to understand the meaning of spirituality for parents of cancer patients in Lebanon.
This qualitative study followed the Heideggerian interpretive phenomenological method. Through purposeful sampling, 11 parents (mother or father) of children with cancer receiving treatment at a tertiary care center in Beirut, Lebanon were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironside (1998).
A constitutive pattern and overarching theme, "spirituality is a two-level relationship. It is a relation with God and with people. It is the act of receiving and giving back" and five major themes emerged from the data. These were "Being there for me; " "Connectedness with other parents is a blessing and a torment; " "The power of knowing; " "Communication with Unknown" and "Spirituality is not religiosity".
Lebanese parents of children with cancer defined the elements of their own spirituality. Relational aspects dominated and communication was an important factor.
This is the first study in the Middle East to address the meaning of spirituality in this population, and would pave the way for a customized palliative care program and integrative approach to patient care.
癌症患儿的家庭照顾者在应对孩子的疾病时面临着情感、心理和精神上的挑战。为确保全面的多学科儿科护理,有必要了解并界定灵性在他们孩子患病背景下对他们而言意味着什么。本研究的目的是了解黎巴嫩癌症患者父母对灵性的理解。
本定性研究采用海德格尔诠释现象学方法。通过目的抽样,对在黎巴嫩贝鲁特一家三级护理中心接受治疗的11名癌症患儿的父母(母亲或父亲)进行了访谈。数据按照迪克尔曼和艾恩赛德(1998年)所描述的诠释过程进行分析。
从数据中浮现出一种构成模式和总体主题,即“灵性是一种两级关系。它是与上帝和与人的关系。它是接受与回馈的行为”以及五个主要主题。这些主题分别是“陪伴我”;“与其他父母的联系既是祝福也是折磨”;“认知的力量”;“与未知的沟通”以及“灵性并非宗教信仰”。
黎巴嫩癌症患儿的父母界定了他们自身灵性的要素。关系层面占据主导,沟通是一个重要因素。
这是中东地区第一项探讨该人群灵性意义的研究,将为定制姑息治疗方案和综合性患者护理方法铺平道路。