Cole Molly, Frye William S, Risko Judy, Hall Carrie Ann
Psychology Department, Johns Hopkins All Children's Hospital, United States of America.
Ann Blanton Edwards School of Nursing and Health Sciences, Florida Southern College, United States of America.
J Pediatr Nurs. 2023 Mar-Apr;69:24-30. doi: 10.1016/j.pedn.2022.12.025. Epub 2023 Jan 3.
To explore parental experiences in personal functioning and parenting associated with having a child experiencing chronic non-cancer pain.
Parents with children experiencing chronic pain were asked to fill out a survey prior to their initial Pediatric Pain Clinic or Pain Psychology appointment at a children's hospital in the southeastern United States. A retrospective analysis of qualitative data was conducted. Qualitative results from open-ended survey questions will be focused on within this manuscript.
A total of 288 surveys were collected in this study, with 243 participants answering at least one qualitative question. Of participants who responded to open-ended survey questions, there were 88 responses to a question related to parental change, 73 to parental impact, and 239 to goals of the visit. Through thematic analysis, five qualitative themes were identified: Pain Central: The Hub, Juggling Life, Suffering Side by Side, Unrealized Dreams, and Gettin' it Under Control.
Parents do experience alterations in personal functioning and parenting as a result of having a child that experiences chronic non-cancer pain. Parents face struggles in many aspects of life including emotions, work, and interpersonal relationships. Theoretical considerations were discussed.
Understanding the experiences parents have in raising a child with chronic pain is important in helping health care providers to recognize that this population may need interventions. This also assists in informing patient treatment, improving patient and parent care outcomes, and educating clinicians on how to better support parents.
探讨有孩子患有慢性非癌性疼痛的父母在个人功能和育儿方面的经历。
要求有孩子患有慢性疼痛的父母在他们首次前往美国东南部一家儿童医院的儿科疼痛诊所或疼痛心理门诊就诊之前填写一份调查问卷。对定性数据进行回顾性分析。本手稿将聚焦于开放式调查问卷问题的定性结果。
本研究共收集了288份调查问卷，其中243名参与者至少回答了一个定性问题。在回答开放式调查问卷问题的参与者中，有88份回答涉及父母的变化，73份涉及父母受到的影响，239份涉及就诊目标。通过主题分析，确定了五个定性主题：疼痛核心：枢纽、兼顾生活、并肩受苦、未实现的梦想以及掌控局面。
由于孩子患有慢性非癌性疼痛，父母在个人功能和育儿方面确实会经历变化。父母在生活的许多方面都面临困难，包括情绪、工作和人际关系。对理论考量进行了讨论。
了解父母在抚养患有慢性疼痛孩子方面的经历，对于帮助医疗保健提供者认识到这一群体可能需要干预措施很重要。这也有助于为患者治疗提供信息，改善患者和父母的护理结果，并就如何更好地支持父母对临床医生进行教育。
