Gaughan Veronica, Logan Deirdre, Sethna Navil, Mott Sandra
Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children's Hospital; Department of Nursing, Boston Children's Hospital, Boston, Massachusetts.
Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children's Hospital; Department of Psychiatry, Boston Children's Hospital; Harvard University Medical School.
Pain Manag Nurs. 2014 Mar;15(1):246-57. doi: 10.1016/j.pmn.2012.09.002. Epub 2012 Dec 6.
When a child has chronic pain, it affects the parents. Their response and how it is factored into their lives and family function was the phenomenon of interest that drove this study. The available literature was sparse, especially when the pain etiology was neuropathic. The purpose of this study was to describe the parents' perception of the pain journey from the initial occurrence of their child's pain through the labyrinth of treatment options to successful outcome, to gain a better understanding of parental beliefs about pain, and to learn how parental attitudes and behaviors relate to children's response to treatment for chronic pain. Qualitative descriptive design was used to better understand the phenomenon from those who were the experts because they had experienced it. Parents whose child was enrolled in a pain rehabilitation program participated in open-ended interviews. The children/adolescents were 8-18 years old and diagnosed with complex regional pain syndrome or a related chronic pain condition. During data immersion, the investigators uncovered the pervasive underlying themes of suffering and disempowerment. In addition, the multiple meaning elements were grouped into three categories and supportive subcategories labeled as follows: parent distress, with subcategories schism in parenting, searching, and disabled parenting; and lack of control, with the subcategories family/community, fear, and empowerment. The voices of parents were heard in their description of the exhausting and difficult journey in search of pain relief for their child. Their comments provided insight into how they defined the child's pain and their related parental role.
当孩子患有慢性疼痛时，这会影响到父母。他们的反应以及这种反应如何融入他们的生活和家庭功能，是驱动这项研究的感兴趣的现象。现有的文献很少，尤其是当疼痛病因是神经性的时候。本研究的目的是描述父母对孩子从疼痛初发到经历各种治疗选择直至成功治疗的疼痛历程的认知，以更好地理解父母对疼痛的看法，并了解父母的态度和行为如何与孩子对慢性疼痛治疗的反应相关。采用质性描述设计，以便从那些作为专家亲身经历过的人那里更好地理解这一现象。孩子参加疼痛康复项目的父母参与了开放式访谈。这些儿童/青少年年龄在8至18岁之间，被诊断患有复杂性区域疼痛综合征或相关的慢性疼痛病症。在数据沉浸过程中，研究人员发现了痛苦和无助这两个普遍存在的潜在主题。此外，多个意义元素被分为三类以及如下标记的支持性子类别：父母困扰，子类别包括育儿分歧、探索和育儿能力丧失；缺乏控制，子类别包括家庭/社区、恐惧和赋权。父母在描述为孩子寻找缓解疼痛的疲惫而艰难的历程时，他们的声音被听到了。他们的评论提供了关于他们如何定义孩子的疼痛以及他们相关的父母角色的见解。
