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Table 1 Data collection and analysis

From: Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: study overview and protocol

Study objective

Participants

Tools

Phase

Protocol

Analysis

To document changes made.

Key informants from study settings.

Interview schedule and demographic details questionnaire.

I and IV

Volunteers were recruited from staff members nominated by the organization specific RG member because of their knowledge of the organization. Semi structured, audio taped, individual interviews describing current practice and education were conducted; demographic details were obtained at interview and interviews were supplemented with a document audit. Phase I data documented practice at baseline. In Phase IV, we obtained reports of changes implemented during the project.

Responses from interviews and audits were tabulated under category headings. Demographic details were summarized for groups.

To document changes made.

Organized by CoP members.

Logs to record changes in education and practice.

III

Numbers were recorded of staff/family carers/people with dementia included in each change made.

Summary statistics.

To document changes in staff/practitioners' confidence with delivering palliative care; views on death/dying, palliative care, and a palliative approach for dementia.

Professional practitioners in included settings.

Palliative Care Providers' Evaluation Tool, from Eagar and associates' Palliative Care Evaluation Toolkit [28] plus dementia specific questions. Demographic details form.

I and IV

Staff lists were obtained from partner organizations. A coded questionnaire was delivered to each staff member for return into a locked box. The box was emptied by the research team. In this way, we obtained baseline data and post intervention data. This data was entered into a database using IBM's Statistical Package for the Social Sciences (SPSS).

Paired statistical comparisons were undertaken of individual item scores (Phase I versus Phase IV). Demographic details were summarized for groups and facilitated inter-group comparisons.

To document changes in practitioners' knowledge of a palliative approach and dementia.

Professional practitioners attending relevant education sessions in included settings.

Dementia Knowledge Assessment Tool

(Version 2)a. Palliative Approach Questionnaireb Demographic details (if not already known).

III (data collection) and IV (analysis).

Coded questionnaires were administered and collected by the research team before and after relevant education sessions.

We carried out paired pre-post education statistical comparisons of summed scores and individual item scores. Demographic details were summarized for groups and facilitated inter-group comparisons.

To document outcomes from the perspective of family carers.

Family carers of people drawing close to death with dementia (included settings). Bereaved family carers of people who had died with dementia (also included settings).

Satisfaction With Care

at the End of Life in Dementia (SWC-EOLD) scale [29]. Demographic details form. Interview schedule.

Questionnaires requesting feedback on practice changes/new resources (Phase IV only).

I - current and bereaved carers.

IV - current carers.

Recruitment was via a letter of invitation sent out by the staff of the partnering organization. Interviews were generally face to face but some were conducted over the telephone. Interviews addressed practice and associated outcomes for clients and families; all were audiotape recorded and transcribed. The SWC-EOLD [29] was administered during the interview. Phase I obtained baseline data. In Phase IV, obtaining post intervention data, the letter of invitation was accompanied by a feedback questionnaire and demographic details form. Feedback data and accompanying demographic data were entered into an SPSS database.

Using QSR International's NVivo software to support categorization of qualitative data, thematic analysis was carried out by the interviewer and an experienced researcher. Demographic details and SWC-EOLD data were incorporated in reports of qualitative findings. Feedback and accompanying demographic data were summarized using descriptive statistics. Comments were also summarized.

To document outcomes from the perspective of care providers.

Professional practitioners and support workers (included settings)

Feedback questionnaires and items.

III and IV

Feedback questionnaires were provided for all staff attending education sessions. Items were also added to the Phase IV survey of professional practitioners requesting feedback on changed protocols and new resources.

We calculated descriptive statistics and any comments were summarized.

To document outcomes from the perspective of care providers.

Key informants (included settings).

Interview schedule.

I and IV

Key informant interviews included questions addressing outcomes of practice at baseline (Phase I) and after change was implemented (Phase IV).

Relevant responses from interviews were categorized.

To document outcomes from the perspective of CoP members.

All consenting CoP members.

Interview schedule. Demographic details form. Capacity Building Checklist from Eagar and associates' Palliative Care Evaluation Toolkit [28].

IV

Recruitment was via a letter of invitation sent out by the research team. Interviews were individual and face to face. The checklist was completed at the start of the interview. Thereafter, all interviews were audiotape recorded and transcribed. Data from the checklist were entered in to an SPSS database.

Using the NVivo software program to support categorization of data, thematic analysis was carried out by the interviewer and an experienced researcher. This analysis provided descriptions of CoP members' perceptions of processes and their outcomes. Checklist data were summarized using descriptive statistics.

To document the extent to which changes enhanced practice and care continuity.

Research team.

Reports detailing practice recommendations (Phase I), practice at baseline and its outcomes (Phase I), and changed practice and outcomes (Phase IV).

IV

Overall reporting by the research team examined changes in education, practice, and outcomes, comparing practice changes across sectors and with practice recommendations.

Enhanced practice was viewed as that which aligned more closely with practice recommendations and/or led to improved outcomes.

A more consistent approach across sectors that aligned with practice recommendations was regarded as enhancing care continuity.

To document barriers to/facilitators of CoP implementation.

Research team and CoP members.

Process log and audiotape recordings of CoP meetings. CoP interview scheduling also facilitated critical reflection by CoP members.

All.

Processes were logged throughout the project by the project officers in the two states. Logging included recording each CoP meeting's aim and outcomes, along with field notes. With the consent of CoP members, CoP meetings also were audiotape recorded. CoP interviews included reference to barriers and facilitators.

A table of barriers to and facilitators of CoP implementation was constructed from these data. A summary of process and contextual differences between the project's implementation in each state and subsequent outcomes was also synthesized by the research team and investigators; this informed an overall description of barriers and facilitators.