Caregiver-Guided Pain Management Training in Palliative Care

描述(申请人提供)：生命末期的疼痛是癌症患者及其家庭照顾者的主要担忧。传统上，癌症疼痛的疼痛管理工作的重点一直是患者。然而，对家庭成员的研究证明，临终关怀的心理社会影响是深远的，特别是在患者经历疼痛的时候。对于家庭照顾者来说，这种影响会持续下去--往往会在他们所爱的人去世后很长一段时间内导致心理痛苦增加，健康状况变差。这样做的最终目的是 研究的目的是开发更有效的方法来帮助患者及其家庭照料者应对癌症疼痛，从而减少患者与疼痛相关的心理痛苦，以及护理经历对其家庭成员的短期和持久的负面影响。我们最近完成了一项小型试点研究，以测试一种新颖的护理者指导的疼痛管理培训方案，该方案培训符合临终关怀资格的癌症疼痛患者及其家人护理人员行为疼痛应对技能(例如，放松、引导成像、活动起搏)，并教他们如何应用应对技能来管理负面疼痛相关后遗症，提高他们的生活质量。结果表明，干预导致护理者帮助患者管理疼痛的自我效能感显著提高，并有改善护理者压力和患者疼痛的趋势。拟议的研究以这些研究结果为基础并加以扩展，方法是：(A)利用PCRC的资源和支持，接触更多和更多样化的患者及其非正式照顾者样本；(B)通过视频会议提供干预措施，以增加接触和传播的可能性；以及(C)评估干预措施对患者死亡后照顾者适应的影响。据我们所知，这将是第一个严格检查疼痛应对技能干预的随机对照试验，该干预旨在提高照顾者在生命末期管理疼痛的能力，是否可以在丧亲期间为照顾者带来福利。在这项多点研究中，236名患者(患者和他们的家庭照顾者)将被随机分配到护理员指导的疼痛管理培训方案或强化照常治疗控制条件下。在照顾者指导的疼痛管理条件下的DYADS将通过视频会议接受三次一小时的治疗。接受常规强化治疗的患者将接受有关癌症疼痛及其管理的教育材料，但不会接受任何与研究相关的治疗课程。将在治疗前和治疗后对患者和照顾者进行评估，并在患者死亡后3个月和6个月与照顾者进行评估。需要检验的主要假设是，接受干预的照顾者在帮助患者控制疼痛方面的自我效能感水平将显著高于对照组的照顾者。次要目标将侧重于(A)改善短期照顾者调整以及患者死亡后的照顾者调整，以及(B)患者疼痛严重程度、疼痛管理的自我效能和心理痛苦。

DESCRIPTION (provided by applicant): Pain at the end of life is a major concern of cancer patients and their family caregivers. The focus of pain management efforts for cancer pain traditionally has been on the patient. Studies of family members, however, have documented that the psychosocial impact of end of life care is profound, particularly when the patient is experiencing pain. For family caregivers, this impact endures--often resulting in increased psychological distress and poorer health long after their loved one dies. The ultimate goal of this research is to develop more effective ways to help patients and their family caregivers cope with cancer pain and thereby reduce the psychological distress associated with pain for the patient and the short-term and enduring negative effects of the caregiving experience for their family members. We recently completed a small pilot study to test a novel Caregiver-Guided Pain Management Training protocol that trained hospice-eligible patients with cancer pain and their family caregivers in behavioral pain coping skills (e.g., relaxation, guided imagery, activity pacing) and taught them how to apply coping skills to manage negative pain-related sequelae and enhance their quality of life. Results indicated that the intervention led to significant improvements in caregiver self-efficacy for helping patients manage pain, and trends for improvements in caregiver strain and patient pain. The proposed study builds on and extends these findings by (a) utilizing the resources and support of the PCRC to access a larger and more diverse sample of patients and their informal caregivers; (b) delivering the intervention via videoconference to increase access and potential for dissemination; and (c) assessing the impact of the intervention on caregiver adjustment after the patient's death. To our knowledge, this will be the first RCT to rigorously examine whether a pain coping skills intervention designed to improve the caregiver's ability to help the patient manage pain at end of life can lead to caregiver benefits during the bereavement period. In this multi-site study, 236 dyads (patients and their family caregivers) will be randomized to either the Caregiver-Guided Pain Management Training protocol or to an Enhanced Treatment-as-Usual control condition. Dyads in the Caregiver-Guided Pain Management condition will receive three one-hour sessions conducted via videoconference. Dyads in the Enhanced Treatment-as-Usual condition will receive educational material about cancer pain and its management but will not receive any study-related treatment sessions. Assessments will be conducted with patients and caregivers before and after treatment, and with caregivers 3 months and 6 months following the patient's death. The primary hypothesis to be tested is that caregivers who receive the intervention will report significantly higher levels of self-efficacy for helping the patient manage pain than caregivers in the control condition. Secondary aims will focus on (a) improvements in short-term caregiver adjustment as well as caregiver adjustment following the patient's death, and (b) patient pain severity, self-efficacy for pain management, and psychological distress.