Advance Care Planning in Hospice Organizations: A Qualitative Pilot Study

<h3> Project Summary: </h3>

<p> In 2016, we conducted a qualitative, descriptive multisite study of the practices, attitudes, and measurement of the ways in which clinicians elicit goals and values for hospice care, the provision of that care, and changes in these practices over time. At the time the study was initiated, no data existed on hospice staff members’ perceptions of Advance Care Planning (ACP), their ACP practices, and their measurement of ACP, making it essential to use a flexible methodology for the formative research. We selected a case study approach with qualitative methods, as appropriate for exploratory research questions related to processes and ‘how’ and ‘why’ questions not previously addressed in the literature. The study uses multiple data types – interviews and documents– to triangulate and gain a detailed understanding of process and address the research aims. </p>

<h3> Data Overview: </h3>

<p> This dataset includes transcripts of 51 semi-structured interviews from a four-site qualitative study; 33 documents could not be de-identified and available only upon request from PI. All participants gave verbal consent before participating in a semi-structured interview whose domains included (1) contextual information about the participant and hospice organization; (2) processes and practices of eliciting and documenting preferences for care among hospice enrollees; and (3) professional opinions on eliciting/ documenting preferences in the context of the hospice philosophy, including changes in practices over time. </p>

<h3> Data Collection Overview: </h3>

<p> All data were collected by the depositor (a PhD qualitative researcher) during a two-day site visit to each of four non-profit, community-based hospices affiliated with the Palliative Care Research Cooperative (PCRC), between April and September 2016. Semi-structured in-depth interviews were conducted with key informants. All interviews were digitally recorded. Audio recordings of interviews were transcribed by a professional transcription service and reviewed for accuracy. All data were converted to electronic format, then uploaded to a qualitative data analysis software program: Atlas.ti, version 8. Any identifying information was redacted by deleting audio-recorded portions of the tapes, deleting words from the transcript, or blacking out the words in hand-written notes. Member checking was used to validate and establish credibility of the findings by returning transcripts to the participant for review and clarification, and presenting preliminary findings to a diverse audience of hospice and palliative care researcher-clinicians, to solicit views and interpretations of the credibility of the findings. Other documents were also collected (brochures, internal training materials), but cannot be redacted and therefore are not being shared publicly. </p>

<p> Study Sites: Participating sites were four geographically-distinct non-profit US hospice organizations. Site refusal rate was 0%: the first four sites recruited agreed to participate. </p>

<p> Study Participants: Participating individuals were hospice employees: 61% clinical staff, 25% executive leaders, and 14% quality improvement (QI) administrators. Criterion and chain-referral sampling strategies were used to identify potential participants involved in conducting Advance Care Planning (ACP), fostering ACP engagement, or measuring ACP quality at hospice organizations. Hospice leaders were recruited by a phone call or email from the research team. We asked hospice leaders to forward our email to other potential participants at their organization. Verbal consent was sought before each interview. Participants were asked to speak in their professional capacities on topics that they would normally think about and discuss publicly in their daily work. Notes / transcripts were returned to participants for clarification, but no changes were made by them. </p>

<h3> Organization of Shared Data: </h3>

<p> In file names, “s” stands for data collection site number; “p” for participant number; and an indication of participant role or discipline is an important element, e.g. leader or quality improvement administrator (QI). </p>

<h3> Data Analysis: </h3>

<p> A codebook was developed in an iterative fashion, with an initial version based on specific aims and the Theory of Domains Framework. The codebook as revised through a process of writing memos and discussions with a second coder regarding clusters of data as instances of a general concept. </p>

<h3>Collaborators:</h3>
<p>The project author designed the interview guides and did all data collection and data management. Christine Ritchie and Rebecca Sudore (co-authors of resulting publications), PCRC, and members of the author's advisory board provided important input during the interview guides design step.</p>

<h3>项目概述：</h3>

<p>2016年，我们开展了一项定性描述性多站点研究，旨在探索临床医护人员为临终关怀护理明确目标与价值的方式、相关护理的实施情况，以及此类实践随时间推移的变化，并就相关实践、态度与衡量方式展开调研。研究启动时，尚无关于临终关怀工作人员对预先照护计划（Advance Care Planning, ACP）的认知、自身ACP实践及ACP质量衡量情况的相关数据，因此需采用灵活方法开展形成性研究。我们选用结合定性方法的案例研究法，该方法适配此前文献尚未涉及的、与流程及“如何”“为何”相关的探索性研究问题。本研究采用访谈与文档等多种数据类型，通过三角验证法深入理解相关流程，并达成研究目标。</p>

<h3>数据概览：</h3>

<p>本数据集包含一项四站点定性研究中51份半结构化访谈的转录文本；另有33份文档无法进行去标识化处理，仅可通过向项目负责人（Principal Investigator, PI）申请后获取。所有参与者在参与半结构化访谈前均已获得口头知情同意，访谈涵盖三大领域：（1）参与者自身及所在临终关怀机构的背景信息；（2）为临终关怀入住者明确并记录护理偏好的流程与实践；（3）结合临终关怀理念，就明确/记录偏好的实践及此类实践随时间的变化发表专业见解。</p>

<h3>数据收集概览：</h3>

<p>所有数据由数据提交者（一名定性研究方向的哲学博士）于2016年4月至9月间收集完成，该研究者对四家隶属于姑息治疗研究合作组（Palliative Care Research Cooperative, PCRC）的非营利性社区临终关怀机构进行了为期两天的现场调研。研究对关键信息提供者开展半结构化深度访谈，所有访谈均进行了数字录音。访谈的音频录音交由专业转录服务机构完成转写，并经准确性复核。所有数据均转换为电子格式后，上传至定性数据分析软件Atlas.ti 8.0版本。所有可识别身份的信息均已通过以下方式进行脱敏处理：删除录音磁带中的相关片段、从转录文本中删除敏感词汇，或在手写笔记中涂黑敏感内容。本研究采用成员检查法以验证研究结果的可信度：将转录文本返还给参与者进行审阅与澄清，并向由临终关怀与姑息治疗领域的研究者-临床医护人员组成的多元群体展示初步研究结果，以征询其对研究结果可信度的看法与解读。研究同时收集了其他文档（如宣传手册、内部培训材料），但此类文档无法进行脱敏处理，因此未对外公开共享。</p>

<p>研究站点：本次研究纳入四家地理位置分散的美国非营利性社区临终关怀机构。站点拒访率为0%：首批招募的四家机构均同意参与本研究。</p>

<p>研究参与者：本次研究的参与者均为临终关怀机构员工，其中61%为临床医护人员、25%为机构高管、14%为质量改进（Quality Improvement, QI）管理员。研究采用标准抽样与链式抽样策略，筛选出参与临终关怀机构内预先照护计划（ACP）实施、推动ACP参与或衡量ACP质量的潜在参与者。研究团队通过电话或邮件邀请临终关怀机构高管参与，同时请其将研究邮件转发给机构内其他潜在参与者。所有访谈前均已获取参与者的口头知情同意。研究要求参与者以其专业身份，就日常工作中会常规思考并公开讨论的话题发表看法。研究将笔记与转录文本返还给参与者以澄清细节，但参与者未对文本作出任何修改。</p>

<h3>共享数据的组织方式：</h3>

<p>在文件名中，“s”代表数据收集站点编号，“p”代表参与者编号，同时文件名中会包含参与者角色或学科的相关标识，例如“leader”（机构负责人）或“quality improvement administrator (QI)”（质量改进管理员）。</p>

<h3>数据分析：</h3>

<p>本研究以迭代方式开发编码手册，初始版本基于研究的具体目标与领域框架理论（Theory of Domains Framework）。后续通过撰写备忘录并与第二位编码员就作为通用概念实例的数据集群展开讨论，完成了编码手册的修订。</p>

<h3>合作方：</h3>
<p>本项目的设计者负责制定访谈提纲，并完成全部数据收集与数据管理工作。Christine Ritchie与Rebecca Sudore（后续发表论文的共同作者）、姑息治疗研究合作组（PCRC）以及研究者咨询委员会的成员，均在访谈提纲的设计阶段提供了重要意见。</p>