Smith Nicole R, Bally Jill M G, Holtslander Lorraine, Peacock Shelley, Spurr Shelley, Hodgson-Viden Heather, Mpofu Christopher, Zimmer Marcelline
University of Saskatchewan, Saskatoon, Canada.
Saskatchewan Health Authority, Saskatoon, Canada.
J Spec Pediatr Nurs. 2018 Oct;23(4):e12226. doi: 10.1111/jspn.12226. Epub 2018 Oct 28.
The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking.
The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention.
A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness.
Sixty-eight experts consisting of parental caregivers of children diagnosed with life-limiting or life-threatening illnesses and those who care for them (community members, nurses, social workers, and physicians) were recruited to participate. Through three rounds of survey questions, response rates ranged from 92-97%. A consensus revealed eight major themes that support parental hope: Organize Basic Needs; Connect with Others; Prioritize Self-care; Obtain Meaningful Information; Take Things Day by Day; Advocate for Parental Participation; Manifest Positivity; and Celebrate Milestones.
This study identified a wide variety of psychosocial needs for parental caregivers. Results also offered direction for a theory-based hope intervention while highlighting the need for additional research in this area. These results will provide the foundation for a booklet parents can work through in their journey of caring for a child with a life-limiting or life-threatening illness.
儿童的生命受限或危及生命的疾病对父母产生了重大影响，他们经历了大量的情感、身体和精神动荡。希望已被确定为父母照顾者的重要内在资源。具体而言，父母的希望被描述为有四个子过程，包括接受现实、建立控制、重塑希望和有目的的积极思考。
这项德尔菲研究的目的是收集父母和正式护理提供者对父母希望至关重要的四个子过程的专家意见，以增进对父母照顾者当前支持需求的理解。作为一项三阶段研究的第一阶段，研究结果为基于理论的希望干预措施的制定提供了方向。
采用了一项德尔菲研究，该研究包括三轮调查问题并向专家提供受控反馈。专家们针对每个子过程提出策略，并根据可行性和有效性从高到低进行排序。
招募了68名专家，包括被诊断患有生命受限或危及生命疾病的儿童的父母照顾者以及照顾他们的人（社区成员、护士、社会工作者和医生）参与研究。通过三轮调查问题，回复率在92%-97%之间。达成的共识揭示了支持父母希望的八个主要主题：安排基本需求；与他人建立联系；优先自我照顾；获取有意义的信息；一天天地应对；倡导父母参与；展现积极态度；庆祝里程碑。
本研究确定了父母照顾者广泛的心理社会需求。研究结果还为基于理论的希望干预提供了方向，同时强调了该领域进一步研究的必要性。这些结果将为一本小册子奠定基础，父母可以在照顾患有生命受限或危及生命疾病的孩子的过程中使用这本小册子。
