A Psychosocial Intervention for the Caregivers of Advanced Lung Cancer Patients

针对晚期肺癌患者护理人员的心理社会干预

• 批准号: 9124803
• 负责人: Hoda J Badr
• 金额: $ 45.59万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9124803
• 关键词: Address; Advance Directives; Advanced Malignant Neoplasm; Advocate; Age; Analgesics; Anxiety; Baseline Surveys; Behavior; Cancer Etiology; Cancer Family; Cancer Intervention; Cancer Patient; Caregiver Burden; Caregiver support; Caregivers; Caring; Clinical Practice Guideline; Communication; Comorbidity; Competence; Complement; Complex; Counseling; Data; Diagnosis; Disease; Documentation; Education; Educational process of instructing; Emotional; Enrollment; Family; Family Caregiver; Family member; Future; Gender; Health; Home environment; Individual; Intervention; Intervention Trial; Malignant Neoplasms; Malignant neoplasm of lung; Manuals; Mediating; Medical; Medical Records; Mental Depression; Outcome; Outpatients; Palliative Care; Patients; Philosophy; Pilot Projects; Play; Problem Solving; Psychosocial Assessment and Care; Publishing; Quality of life; Randomized; Randomized Controlled Trials; Recommendation; Reporting; Resources; Role; Self Care; Self Determination; Self Efficacy; Services; Social support; Spouses; Staging; Supportive care; Surveys; Symptoms; Telephone; Testing; Training; Training Support; United States; Volition; Work; active method; base; caregiver interventions; caregiving; coping; efficacy testing; emotional distress; empowered; experience; family support; follow-up; hospice environment; improved; medical specialties; meetings; mortality; multidisciplinary; outreach; palliative; physical symptom; point of care; programs; psychosocial; respite care; satisfaction; skills; skills training; social; stress management; symptom management; theories

DESCRIPTION (provided by applicant): The profound symptom burden associated with advanced lung cancer (LC) makes caregiving a complex and burdensome task. Despite the input of outpatient palliative care services, LC families are often unprepared for caregiving, have low self-efficacy for managing symptoms at home, report high rates of physical and emotional distress, and receive very little skills training or psychosocial care. To date, the few psychosocil intervention trials targeting the caregivers of advanced cancer patients that have been conducted have mostly targeted the families of hospice patients, have not been well-integrated into routine palliative care, and have not addressed the specific needs of LC caregivers. Based on our published and recently completed pilot work in LC, we have developed a psychosocial intervention called CareSTEPS (self-Care, Stress management, sympTom management, Effective communication, Problem-solving, and Social support). CareSTEPS is grounded by Self Determination Theory (SDT) which focuses on individuals' needs for developing autonomy (a sense of choice and volition), competence (self-efficacy), and relatedness (a sense of belonging and connection). It: 1) teaches skills to enhance caregiver competence for managing symptoms, practicing self-care, and coping with cancer~ 2) supports caregiver autonomy by providing a clear rationale for recommendations and a variety of options to encourage choice and elaboration~ and, 3) seeks to improve caregivers' sense of relatedness by teaching strategies for effective communication and soliciting/accepting social support. We will enroll 200 LC patients within one month of treatment initiation (baseline) and their caregivers and randomize them to either a usual medical care (UMC) condition or the CareSTEPS intervention (caregivers receive a manual and six 45-minute weekly counseling sessions by telephone). Follow-up surveys are completed at 8 weeks and 6 months post-baseline. The primary aim is to determine the impact of the CareSTEPS intervention on caregiver self-care behaviors, physical and emotional QOL, and satisfaction with care. Secondary aims are to: 1a) examine the effects of CareSTEPS on the SDT constructs of competence, autonomy, and relatedness~ 1b) test whether caregiver competence, autonomy and relatedness mediate the effects of CareSTEPS on caregiver outcomes as hypothesized~ 2) explore whether sociodemographic, medical, and relationship factors moderate the effects of the CareSTEPS intervention on SDT constructs~ and, 3) explore the effects of CareSTEPS on patient QOL, palliative care utilization, nd satisfaction with care. CareSTEPS fills an important service gap by providing education, skills training, and support to the caregivers of advanced LC patients who are on active treatment. The home-based delivery format will facilitate future dissemination and outreach. By empowering families with the skills they need to provide care and meet the challenges of LC, CareSTEPS holds great promise for improving caregiver QOL, patient QOL, and the quality of palliative/supportive care services for advanced cancer patients and their families.

描述（由申请人提供）：晚期肺癌（LC）相关的严重症状负担使治疗成为一项复杂而繁重的任务。尽管门诊姑息治疗服务的投入，LC家庭往往没有做好准备， 在家中管理症状的自我效能低，报告身体和情绪困扰的比率高，接受的技能培训或心理社会护理很少。迄今为止，针对晚期癌症患者护理人员的少数心理社会干预试验主要针对临终关怀患者的家庭，尚未很好地融入常规姑息治疗，也未解决LC护理人员的特定需求。根据我们发表的和最近完成的试点工作在LC，我们已经开发出一种心理社会干预称为CareSTEPS（自我护理，压力管理，sympTom管理，有效沟通，解决问题，和社会支持）。 CareSTEPS以自我决定理论（SDT）为基础，专注于个人的需求， 发展自主性（选择感和意志力），能力（自我效能）和相关性（归属感和联系）。 它：1）教授技能，以提高护理人员管理症状，实施自我护理和应对癌症的能力~ 2）通过提供明确的建议理由和各种选择来支持护理人员的自主性，以鼓励选择和阐述~以及，3）通过传授有效沟通和寻求/接受社会支持的策略，努力提高照顾者的亲情感。 我们将在治疗开始（基线）后一个月内招募200名LC患者及其护理人员，并将其随机分配至常规医疗护理（UMC）条件或CareSTEPS干预（护理人员通过电话接受手册和6次45分钟的每周咨询会议）。在基线后8周和6个月完成随访调查。 主要目的是确定CareSTEPS干预对护理人员自我护理行为、身体和情感QOL以及护理满意度的影响。次要目标是：1a）检查CareSTEPS对能力、自主性和相关性的SDT结构的影响~ 1b）测试照顾者能力、自主性和相关性是否如假设的那样介导CareSTEPS对照顾者结果的影响~ 2）探索社会人口统计学、医疗、和相关因素调节CareSTEPS干预对SDT结构的影响; 3）探讨CareSTEPS干预对患者生活质量、姑息治疗利用和护理满意度的影响。 CareSTEPS通过为正在积极治疗的晚期LC患者的护理人员提供教育、技能培训和支持，填补了一个重要的服务空白。 家庭授课形式将促进今后的传播和外联。 通过赋予家庭提供护理和应对LC挑战所需的技能，CareSTEPS为改善护理人员生活质量，患者生活质量以及晚期癌症患者及其家属的姑息/支持性护理服务质量带来了巨大的希望。