音乐作为一种以患者为中心的疼痛管理方法：患者与护士领导的研究团队的合作

Full text

Hold your breath, make a wish

Count to three

Come with me and you'll be

In a world of pure imagination.

‘Pure Imagination Lyrics.’ Lyrics.com. STANDS4 LLC, 2022. Web. 7 May 2022. https://www.lyrics.com/lyric/27270619/Leslie+Bricusse.

Throughout my many years as a patient, music has been a source of comfort. Fond memories of happy childhood tunes have inspired me to turn to music during times of illness. It has been a steadfast companion during diagnostic tests, post-operative wound management and infusions, ensuring that my imagination does not drift into sombre places. Instead, music has served to invigorate my imagination with its vibrant and uplifting melodies even during the darkest of moments.

I came to join the Music for Pain Relief (M4PR) study team through my work on the Johns Hopkins Children's Center Patient and Family Advisory Council (PFAC). In 2009, I joined the newly established PFAC, which was composed of a diverse group of individuals, including patients' families, hospital administrators, and front-line staff. As a result of my personal experience with my young son and my own observations as a critically ill patient, I came to appreciate the pressing need for enhanced patient education and more effective communication between healthcare teams and patients. I recognised such improvements would be key to elevating the overall hospital experience.

My involvement with the PFAC has provided me with the invaluable opportunity to collaborate with Johns Hopkins University and Johns Hopkins Health System in their pursuits to improve and enhance every aspect of healthcare service for patients and their families. The PFAC serves as a safe space for faculty, staff and administrators to obtain feedback from patients and their families. For almost 15 years, I have served as a patient representative on various hospital, health system and university committees, panels, and workgroups. These have focused on crucial areas such as Quality & Safety, Quality Improvement, Service Excellence, Interprofessional Education, and Patient Safety. I proudly describe myself as a ‘professional patient’ who advocates for patient– and family–centered care, with a focus on enhancing patient safety and the overall patient experience.

In April 2020, despite the challenges posed by the Covid-19 pandemic, PFAC leaders decided to forge ahead with our monthly meetings by switching the format from in-person to Zoom. This was a novel and innovative way to sustain our mission and provide a forum for PFAC members to hear first-hand accounts from the pandemic's frontlines while offering support in any way possible. It was at this meeting that I learned about the Center for Nursing Inquiry's Music for Pain Relief study and the Johns Hopkins Evidence-Based Practice (EBP) for Nurses and Healthcare Professionals Model (Dang et al., 2021).

The primary aim of this nurse-led study was to evaluate the feasibility of integrating patient-preferred music into nursing practice, based on evidence suggesting that music can provide relief for patients with pain and anxiety. The study operationalised access to ‘patient-preferred’ music, which involved asking patients what music they would like to hear, thereby making them feel like valued members of the healthcare team. The simple act of honouring their preference could have a profound impact on soothing their weary souls. The lead researchers sought feedback from our PFAC group to assess the feasibility of the study. Specifically, the research team wanted to know how to gain buy-in from both the RNs who would implement the study and the patients who would participate. This was achieved by simply asking for patient input via the PFAC.

Following the meeting, I contacted the Nurse Research Coordinator to learn more about the study because I have always found music to be a source of comfort during challenging times. As a former patient who was prescribed opioids for pain relief during hospitalisation and at home, I can attest to the dreadful side effects that can result in dependence and addiction. Fortunately, in my experience, the care team swiftly discontinued the use of opioids once they learned of my adverse reactions; but I knew that wasn't always the patient experience. As I learned more about the research and the expertise of the team, I was invited to join the research group and have been treated as a valued member ever since. I witnessed seamless multidisciplinary collaboration among physicians, nurses, implementation scientists, public health experts, music therapists, and other researchers in designing and implementing a study aimed at relieving pain in hospital patients by incorporating music into the patient care plan. I had a front-row seat not only to observe, but also to participate in the careful planning and execution of the study.

During the early stages of the study, the research team and PFAC worked together to identify potential challenges and barriers to achieving buy-in and participation from both nurses and patients. One key consideration was how best to communicate the importance of the study and the significance of nurse–patient involvement. We also discussed whether nurses would have sufficient time to dedicate to the study, given their demanding schedules. To address these concerns, the research team introduced the Theoretical Domains Framework (TDF) and the capacity opportunity motivation behaviour (COM-B) model to assess and describe current work processes, and together we developed an approach for engaging nurses on specifically targeted units. We also carefully selected a user-friendly pain scale for nurses and patients to use, and a young patient developed the M4PR logo for the study signage. Throughout this process, we recognised the importance of adhering to Johns Hopkins' strict compliance guidelines. Through a music industry contact, I obtained complimentary Spotify Premium accounts that could be accessed via the tablets routinely provided to patients by Johns Hopkins Hospital. The M4PR team (primarily the music therapist) curated playlists that met the guidance for tempo and duration as described in the literature, providing patients with a choice of music to listen to during the study while isolated in the hospital.

From my own family's experience, the poignant moments we shared as patients with our bedside nurses are etched indelibly in our memory. These compassionate caregivers possess an innate warmth and a remarkable ability to gauge the emotional temperature of the room. It is this empathic skill that makes them the perfect choice to execute critically important interventions aimed at fostering patient participation and conducting research at the bedside. Yet, securing buy-in for the study during tumultuous and challenging times proved to be a formidable hurdle for nurses who were already pivoting and stretching to provide quality care.

Now 3 years later, I have developed a profound respect for this talented group of multidisciplinary professionals who have dedicated themselves to investigating the potential healing power of music for patients. Despite the physical distance between us, they have actively sought my input and have consistently demonstrated a genuine desire to ensure that I understand the research foundations and process. While I recognise that my voice is just one among many, I am confident that my perspective is valued and that the research team is committed to truly understanding the experiences of patients and their families.

Prior to my involvement in this study, I had little understanding of the immense breadth and depth of responsibilities shouldered by nurses on a daily basis. From providing attentive bedside care to managing complex data and ensuring quality & safety standards, the demands placed on nurses are staggering. Each of these job functions requires near-flawless execution, as the stakes are nothing less than human lives. I can only hope that their satisfaction in caring for patients provides nurses with a sense of deep fulfilment. In the healthcare field, nurses are truly the ultimate team players, working in an environment where collaboration, laser focus, attention to detail, intuition, and compassion are essential attributes. This gives me great hope for the future of healthcare, and I feel privileged to have been part of this important work.

In my view, researchers must engage patients and family members in the research design process to ensure that their perspectives, experiences, and needs are adequately represented. I offer below some practical advice to future interdisciplinary researchers on how to engage patients and family members when designing research.

1. Start early: Patient and family member engagement should be considered early in the research process. Begin by identifying potential partners and stakeholders in the community and reaching out to them to gauge their interest in participating.

2. Build relationships: Building relationships with patients and their families is essential to engage them in research. Demonstrate respect by introducing yourself and explaining the purpose of the study. Be clear when communicating the expectations and what their involvement entails. Determine which member of the study team will serve as the primary mentor to the patient representative(s) on the team.

3. Listen: Listen carefully to the perspectives and experiences of patients and their families. Be open and non-judgmental and acknowledge their input. Encourage them to share their opinions, thoughts, and concerns about the research study.

4. Co-design the research: Patients and their families can provide valuable input on the research design, including the study's research questions, outcomes, and methods. Involve them in all aspects of the research process, from the initial study design to the dissemination of results.

5. Use plain language: When communicating with patients and families, avoid technical jargon, acronyms, and complex medical terms that may be difficult for them to understand. This approach will help to build trust and ensure that patients and families are fully informed.

6. Provide feedback: Provide regular feedback to patients and families about the progress of the research study. This feedback should include how their input has been incorporated into the study and how it has ultimately influenced the research outcomes.

7. Be transparent: Share research goals transparently with patients and family members as well as the methods you plan to use, and how you intend to use the results. This will help build trust and ensure that everyone is on the same page.

8. Be flexible: It's important to be flexible and open-minded when working with patients and family members. They may have unique perspectives and ideas that you may not have considered. Be willing to listen to their feedback and incorporate it into your research design.

9. Offer support: Patients and family members may be unfamiliar with the research process, so it's important to offer them support and guidance throughout the process. Provide them with clear instructions, answer their questions, and offer resources that can help them participate effectively.

10. Respect their time and expertise: Patients and family members are often volunteering their time and expertise to participate in research. Make sure to respect their time by keeping meetings and discussions concise and focused. Additionally, recognise and acknowledge their expertise by involving them in decision-making and giving them credit for their contributions.

Effective engagement of patients and family members is critical to the success of nursing and other healthcare research. By being transparent, using plain language, being flexible, offering support, and respecting their time and expertise, nurse researchers and their colleagues can build strong partnerships with patients and family members and design research that is truly patient-centered.

全文翻译（仅供参考）

在我作为病人的多年里，音乐一直是一种安慰。对快乐童年曲调的美好回忆激励我在生病时转向音乐。在诊断测试、术后伤口处理和输液过程中，它一直是坚定的伴侣，确保我的想象力不会漂移到阴暗的地方。相反，音乐以其充满活力和令人振奋的旋律激发了我的想象力，即使在最黑暗的时刻。

我通过在约翰霍普金斯儿童中心患者和家庭咨询理事会（PFAC）的工作加入了音乐缓解疼痛（M4PR）研究小组。2009年，我加入了新成立的PFAC，该委员会由不同的个人组成，包括患者家属、医院管理人员和一线工作人员。由于我与年幼儿子的个人经历以及我自己作为危重患者的观察，我开始意识到迫切需要加强患者教育以及医疗团队与患者之间更有效的沟通。我认识到这些改进将是提升整体医院体验的关键。

我与PFAC的参与为我提供了宝贵的机会，与约翰霍普金斯大学和约翰霍普金斯卫生系统合作，以改善和加强患者及其家属医疗保健服务的各个方面。PFAC作为教师，工作人员和管理人员的安全空间，以获得患者及其家属的反馈。近15年来，我一直担任各种医院，卫生系统和大学委员会，小组和工作组的患者代表。 这些都集中在关键领域，如质量安全，质量改进，卓越服务，跨专业教育和患者安全。我自豪地将自己描述为一名“专业患者”，倡导以患者和家庭为中心的护理，重点是提高患者安全和整体患者体验。

2020年4月，尽管新型冠状病毒疫情带来挑战，PFAC领导人决定继续推进每月会议，将会议形式由面对面改为Zoom。这是一种新颖和创新的方式来维持我们的使命，并为PFAC成员提供一个论坛，以听取来自大流行前线的第一手资料，同时以任何可能的方式提供支持。正是在这次会议上，我了解了护理调查中心的音乐缓解疼痛研究和约翰霍普金斯循证实践（EBP）护士和医疗保健专业人员模型（Dang et al.，& nbsp;2021年）。

这项由护士主导的研究的主要目的是评估将患者偏好的音乐整合到护理实践中的可行性，证据表明音乐可以缓解患者的疼痛和焦虑。该研究操作化了“患者首选”音乐的访问尊重他们的偏好这个简单的行为，可能会对抚慰他们疲惫的灵魂产生深远的影响。主要研究人员向我们的PFAC小组寻求反馈，以评估研究的可行性。具体来说，研究小组想知道如何从实施研究的RN和参与研究的患者那里获得支持。这是通过PFAC简单地要求患者输入来实现的。

会议结束后，我联系了护士研究协调员，以了解更多关于这项研究的信息，因为我一直发现音乐是一种安慰的来源，在充满挑战的时候。作为一名在住院期间和家中服用阿片类药物缓解疼痛的前患者，我可以证明可能导致依赖和成瘾的可怕副作用。幸运的是，根据我的经验，护理团队在得知我的不良反应后迅速停止了阿片类药物的使用;但我知道这并不总是病人的体验。随着我对研究和团队专业知识的了解越来越多，我被邀请加入研究小组，从那以后一直被视为有价值的成员。我目睹了医生、护士、实施科学家、公共卫生专家、音乐治疗师和其他研究人员之间的无缝多学科合作，设计和实施了一项旨在通过将音乐纳入患者护理计划来缓解医院患者疼痛的研究。我坐在前排，不仅是为了观察，也是为了参与研究的精心计划和执行。

在研究的早期阶段，研究小组和PFAC共同努力，以确定潜在的挑战和障碍，以实现购买和参与护士和患者。一个关键的考虑是如何最好地传达研究的重要性和护士-病人参与的意义。我们还讨论了护士是否有足够的时间致力于研究，因为他们的日程安排很紧。为了解决这些问题，研究小组引入了理论领域框架（TDF）和能力机会激励行为（COM-B）模型来评估和描述当前的工作流程，我们一起开发了一种方法，用于在特定目标单位从事护士。我们还精心选择了一个用户友好的疼痛量表供护士和患者使用，一位年轻的患者为研究标牌开发了M4 PR标志。在整个过程中，我们认识到遵守约翰霍普金斯大学严格合规准则的重要性。通过音乐行业的联系，我获得了免费的Spotify Premium帐户，可以通过约翰霍普金斯医院定期提供给患者的平板电脑访问。M4 PR团队（主要是音乐治疗师）策划了符合文献中所述克里思和持续时间指导的播放列表，为患者提供了在研究期间在医院隔离时收听的音乐选择。

从我自己家庭的经历来看，我们作为病人与床边护士分享的辛酸时刻永远铭刻在我们的记忆中。这些富有同情心的照顾者拥有天生的温暖和非凡的能力来衡量房间的情绪温度。正是这种移情技能使他们成为执行至关重要的干预措施的完美选择，这些干预措施旨在促进患者参与并在床边进行研究。然而，在动荡和充满挑战的时期，确保对这项研究的支持被证明是一个巨大的障碍，护士已经转向和伸展，以提供高质量的护理。

3年后的今天，我对这群才华横溢的多学科专业人士产生了深深的敬意，他们致力于研究音乐对患者的潜在治疗作用。 尽管我们之间的物理距离，他们积极寻求我的投入，并一直表现出真诚的愿望，以确保我了解研究基础和过程。虽然我认识到我的声音只是众多声音中的一个，但我相信我的观点受到重视，研究团队致力于真正了解患者及其家属的经历。

在我参与这项研究之前，我对护士每天所承担的责任的广度和深度知之甚少。从提供细心的床边护理到管理复杂的数据和确保质量安全标准，对护士的要求是惊人的。这些工作职能中的每一项都需要近乎完美的执行，因为赌注不亚于人的生命。我只能希望他们在照顾病人方面的满足感能给护士带来深深的满足感。在医疗保健领域，护士是真正的终极团队成员，工作环境中的协作，激光聚焦，关注细节，直觉和同情心是必不可少的属性。这让我对医疗保健的未来充满了希望，我很荣幸能够参与这项重要工作。

在我看来，研究人员必须让患者和家属参与研究设计过程，以确保他们的观点，经验和需求得到充分代表。我在下面为未来的跨学科研究人员提供了一些实用的建议，以指导他们在设计研究时如何让患者和家庭成员参与进来。           

1. 提早开始：患者和家属的参与应在研究过程的早期考虑。开始确定社区中潜在的合作伙伴和利益相关者，并与他们接触，以衡量他们参与的兴趣。

2. 建立关系：与患者及其家属建立关系对于让他们参与研究至关重要。通过自我介绍和解释研究的目的来表达尊重。在传达期望以及他们的参与需要什么时要清楚。确定研究团队的哪一位成员将担任团队中患者代表的主要导师。

3. 倾听：仔细倾听患者及其家属的观点和经历。保持开放和非判断性，并承认他们的输入。鼓励他们分享他们对研究性学习的意见、想法和担忧。

4. 共同设计研究：患者及其家属可以对研究设计提供有价值的意见，包括研究的研究问题、结果和方法。让他们参与研究过程的各个方面，从最初的研究设计到结果的传播。

5. 使用简单的语言：在与患者和家属沟通时，避免使用技术术语、首字母缩写词和复杂的医学术语，因为这些术语可能难以让他们理解。这种方法将有助于建立信任，并确保患者和家属充分知情。

6. 提供反馈：定期向患者和家属提供关于研究进展的反馈。这种反馈应包括他们的投入如何被纳入研究，以及它如何最终影响研究结果。

7. 保持透明：与患者和家庭成员透明地分享研究目标，以及您计划使用的方法，以及您打算如何使用结果。这将有助于建立信任，并确保每个人都在同一页面上。

8. 灵活：在与患者和家属一起工作时，保持灵活和开放的心态很重要。他们可能有你没有考虑过的独特观点和想法。愿意听取他们的反馈，并将其纳入您的研究设计。

9. 提供支持：患者和家属可能不熟悉研究过程，因此在整个过程中为他们提供支持和指导非常重要。为他们提供明确的指示，回答他们的问题，并提供可以帮助他们有效参与的资源。

10. 尊重他们的时间和专业知识：患者和家人经常自愿投入他们的时间和专业知识参与研究。确保尊重他们的时间，让会议和讨论保持简洁和集中。此外，通过让他们参与决策，并对他们的贡献给予赞扬来认可和认可他们的专业知识。

患者和家庭成员的有效参与对于护理和其他医疗保健研究的成功至关重要。通过透明，使用简单的语言，灵活，提供支持，尊重他们的时间和专业知识，护士研究人员和他们的同事可以与患者和家庭成员建立牢固的伙伴关系，并设计真正以患者为中心的研究。

THE END

打赏