Journal of Pain and Symptom Management

Data collected on the Integrated Palliative Care Outcome Scale from 300 Hospice Patients in Auckland New Zealand

Project Summary: 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. Data Overview: 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. Data Collection Overview: 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. 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. 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. Organization of Shared Data: 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). Data Analysis: 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. Collaborators: 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.