Design

This mixed-methods project combines qualitative methods with semi-structured interviews and focus groups, quantitative methods with online surveys, scoping of the literature, and development of evidence and consensus-based guidance. The project group consists of a consortium of thirteen palliative care departments at German university hospitals: Aachen, Bonn, Cologne, Düsseldorf, Erlangen, Freiburg, Göttingen, Hamburg, Hannover, Jena, Munich, Rostock, and Würzburg. Additional partners come from the university hospitals of Cologne, Mainz, and the Lung Hospital Heckeshorn in Berlin. The group involves researchers from a medical, nursing, sociology, health services research and public health background with expertise in a wide range of quantitative and qualitative research methods.

Setting

The following settings and stakeholders were chosen on the micro, meso and macro level both for reviewing the experiences of the SARS-CoV-2 pandemic in Germany up to winter 2020/2021 and as recipient for the guidance on palliative care for patients in pandemics (see Table 1).

Table 1 Macro, meso and micro level health care setting and authorities

Procedures

The project encompasses ten work packages working in parallel. Work packages 1–6 intend to collect and review experiences and practices of the pandemic in various settings and with various players in Germany up to Winter 2020/2021. Work package 7 conducts a scoping review of the current literature. In work package 8, guidance for palliative care in pandemic times is developed and work package 9 collects best practice examples and identifies variables for research data collection (see Fig. 1). Details of the work packages are provided further below.

Fig. 1
figure1

Structure of work packages in the PallPan Project

Work package 1: experiences of patients and carers

Aim

To explore and describe the experiences of patients and relatives during the SARS-CoV-2 pandemic.

Method and design:

i) qualitative semi-structured interviews following an interview guide (Supplementary File WP1 Interview Guide Patients; Supplementary File WP1 Interview Guide Relatives); ii) national online survey based on an abbreviated version of the International Care of the Dying Evaluation (iCODE) questionnaire and the Positive and Negative Affect Schedule (PANAS; free of licence) [13,14,15,16,17].

Study population:

i) patients in specialist palliative care (palliative care unit, specialist palliative home care) not infected with SARS-CoV-2 and relatives. ii) Relatives of patients who died during the SARS-CoV-2 pandemic (with and without SARS-CoV-2 infection).

Data collection:

i) interviews will be conducted in the setting preferred by patients and relatives, audio recorded and transcribed verbatim, ii) recruitment using a comprehensive approach by clinicians, support groups and public media; data collection using a survey database (LimeSurvey).

Data analyses:

i) qualitative data will be analysed inductively following the Framework Method [18]. The software MAXQDA will facilitate data management and content analysis; ii) quantitative data analyses using descriptive statistics (i.e. means, standard deviations, medians, minimum–maximum ranges) and absolute and percentage frequencies using SPSS Statistics 27. German Clinical Trials Register: DRKS00023552 & DRKS00023839.

Work package 2: generalist palliative care in the community

Aim

To describe experiences, challenges and potential solutions of i) general practitioners (GPs), ii) oncologists, iii) mobile care services and iv) residential nursing homes and facilities for integration assistance in the current pandemic situation with regard to the care of seriously ill and dying patients (with and without SARS-CoV-2 infection) and their relatives.

Method and design:

i) Development and application of a German- wide, structured online survey by means of preparatory interviews and focus groups with GPs (Supplementary File WP2 Online Survey Oncologists); ii, iii and iv) qualitative interviews following a semi-structured interview guide (Supplementary File WP2 Interview guide Mobile care services, Supplementary File WP2 Interview guide Oncologists).

Study population:

i) GPs working in the community, ii) oncologists working in outpatient practices in the community, iii) mobile care services and iv) residential nursing homes and facilities for integration assistance in Germany.

Data collection:

i) preparatory single interviews and focus groups with audio recording and transcription, survey assessment via Questback (/www.questback.com), ii, iii and iv) qualitative interviews following semi-structured interview guide with audio recording and verbatim transcription.

Data analyses:

i) content analysis of qualitative data with the software MAXQDA, descriptive statistics (i.e. means, standard deviations, medians, minimum–maximum ranges) and absolute and percentage frequencies with SPSS Statistics 25, ii, iii and iv) content analysis of qualitative data with MAXQDA. German Clinical Trials Register: DRKS00024990.

Work package 3: specialist palliative home care

Aim

To describe and analyse experiences, challenges and potential solutions of specialist palliative home care teams and volunteer hospice services in the present pandemic with regard to the care of seriously ill and dying patients (with and without SARS-CoV-2 infection) and their relatives and to cooperation with other professionals involved (i.e. nursing services, inpatient hospices, general practitioners etc.).

Method and design:

i) Qualitative online focus groups, qualitative telephone/video interviews with representatives of specialist palliative home care federal state associations, and coordinators of volunteer hospice services (Supplementary File WP3 Interview Guide SPHC). ii) quantitative online questionnaire (Supplementary File WP3 Online Survey SPHC).

Study population:

Professionals from specialist palliative home care teams, representatives of specialist palliative home care federal state associations and staff from volunteer hospice services.

Data collection:

i) 4–6 focus groups with 5–7 participants each from differently affected pandemic areas, 5 representatives of specialist palliative home care state associations and 5 coordinators of volunteer hospice services, ii) nationwide recruitment of executive professionals of specialist palliative home care teams via telephone and e-mail.

Data analyses:

i) Content analysis [19] of qualitative data using MAXQDA, ii) descriptive statistics (i.e. means, standard deviations, medians, minimum–maximum ranges) and absolute and percentage frequencies with SPSS Statistics 26, quantitative content analysis for free-text answers. German Clinical Trials Register: DRKS00025090.

Work package 4: generalist palliative care in the hospital

Aim

To describe and analyse the experience, challenges and potential solutions of hospital staff in generalist palliative care in primary, secondary and tertiary care hospitals with regard to care of seriously ill and dying patients (with and without SARS-CoV-2) and their relatives respectively their bereaved.

Method and design:

i) Qualitative semi-structured online focus groups, if necessary additional individual interviews (Supplementary File WP4 Interview guide PC Hospital) ii) literature and expert-based online survey (Supplementary File WP4 Online Survey PC Hospital).

Study population:

physicians, nurses and other professions caring for patients with and without SARS-CoV-2 in hospitals (exclusive palliative care units).

Data collection:

i) 5 focus groups with 4–8 participants and 1 additional individual interview; recording of the online focus groups using Cisco Webex and transcription ii) nationwide recruitment of participants via mailing lists; online survey using Unipark.

Data analysis:

i) qualitative content analysis by Kuckartz [20], ii) descriptive statistics (i.e. means, standard deviations, medians, minimum–maximum ranges) and absolute and percentage frequencies using SPSS Statistics 26, qualitative content analysis by Kuckartz for free text answers. German Clinical Trials Register: DRKS00023595 & DRKS00023591.

Work package 5: specialist palliative care in the inpatient setting

Aim

To describe and analyse the experiences, challenges and potential solutions of health care professionals working in specialist palliative care services related to the inpatient treatment of patients with and without SARS-CoV-2 infection.

Method and design:

i) Secondary data analyses of an online survey on the burden on staff members caused by the pandemic conducted in May 2020 for the subgroup of respondents working in specialist palliative care services, ii) qualitative semi-structured interviews (Supplementary File WP5 Interview guide SPC Inpatient) and iii) an online survey (Supplementary File WP5 Online Survey PC Units; Supplementary File WP5 Online Survey PC Support Teams; Supplementary File WP5 Online Survey Hospices).

Study population:

i) health care professionals recruited via different pathways, ii) health care professionals working in palliative care units, palliative care hospital support teams or inpatient hospices identified from the German hospice and palliative care directory and iii) staff members from services identified with purposive sampling.

Data collection:

i) secondary evaluation of the database, ii) online survey using ScoSci and iii) semi-structured interviews, either face-to-face or via videoconference with audio recording and verbatim transcription.

Data analyses:

i), ii) descriptive statistics (i.e. means, standard deviations, medians, minimum–maximum ranges) and absolute and percentage frequencies using SPSS Statistics 27, iii) content analysis using MaxQDA. German Clinical Trials Register: DRKS00024979.

Work package 6: pandemic plans and crisis teams at federal, state, and community level and local health care facilities

Aim

To explore SARS-CoV-2 pandemic plans and pandemic boards at federal, state, and community level and local health care facilities with regard to the care of seriously ill patients with far advanced disease at the end of life and their families in the current pandemic.

Method and design:

document analysis (pandemic plans), qualitative telephone/video expert interviews (members of pandemic response teams).

Study population:

pandemic plans at federal, state and community level, members of pandemic boards (purposefully sampled, considering variance in cases with SARS-CoV-2 infection, settings, expertise, dwelling).

Data collection:

systematic collection of pandemic plans, qualitative video or telephone expert interviews with interview guide (Supplementary File WP6 Interview guide Pandemic Teams), recorded, transcribed verbatim.

Data analyses and syntheses:

Pandemic plans are analysed in terms of dealing with the seriously ill and dying and their families or caregivers and multiple other aspects. Deductive and inductive content analyses of interviews regarding the composition, organization and authority of pandemic boards with a focus on palliative care expertise and regarding staff experiences on end of life care issues, solutions and challenges. The results of the document analysis and interviews will be angulated with regard to the strategies of the care of seriously ill patients with far advanced disease at the end of life with or without SARS-CoV-2 and their families. German Clinical Trials Register: DRKS00025013.

Work package 7: evidence synthesis

Aim

i) To identify and synthesise national and international publications on the care of seriously ill patients with far advanced disease at the end of life in pandemic situations; ii) to link „PallPan “to „Ceo-Sys” (COVID-19 evidence ecosystem for improvement of knowledge management and knowledge translation), another consortium project of the Network University Medicine.

Method and design:

Scoping review of the literature.

Study population:

Seriously ill patients with far advanced disease at the end of life both infected and not infected; informal carers; professionals in the health care system.

Data collection:

MEDLINE (PubMed) and websites of international and national palliative care societies are searched in week 52,021 using the search terms “palliative care OR palliative medicine OR residential facilities OR terminal care AND COVID-19 OR corona OR pandemic OR pandemic preparedness”.

Data analyses and syntheses:

Deductive and inductive content analyses of all relevant articles following a predeveloped coding frame.

Work package 8: development and consenting of guidance

Aim

To develop a German guidance for generalist and specialist palliative care of seriously ill and dying patients (with and without infection) and their informal caregivers in pandemic settings with low and high incidence, considering various local and regional disparities of health care in Germany. Addressees are health care professionals in any setting; pandemic boards, stakeholders, and decision-makers in the health care system and on policy level.

Method and design:

i) Development of the recommendations by a group of experts, based on the results of the work packages 1–7 and the expertise of the PallPan-Group; ii) Consensus on the recommendations by a multi-professional panel of experts on the micro, meso and macro level, using a modified Group Delphi process with online survey before the workshop [21].

Work package 9: outputs

Aims

i) To collect information and training materials on palliative care during a pandemic, including best practice examples. ii) To design the “palliative care” area for the platform for pandemics planned by the Network University Medicine (web-based and/or mobile), to provide open access to the collected materials. iii) To define research questions and associated variables for the scientific approach of palliative care in pandemics integrated into the national pandemic cohort (NAPKON; www.napkon.de).

Method and Design:

a) Compiling information and training materials by executing a web research and by using networks of the consortium partners. Reviewing, translating and if necessary adapting international experiences and materials to the German healthcare system, including best practice examples, which will be recorded in the other subprojects. b) Testing all outputs for usability (applicability) and designing the “palliative care” area for the information platform of the National Network and adapting outputs for the mobile pandemic app (COMPASS www.netzwerk-universitaetsmedizin.de/projekte/compass). c) Defining the most relevant research questions and associated variables regarding palliative care during a pandemic by extracting results from the other subprojects as well as from completed and ongoing studies (data collections), especially the Lean European Open Survey on SARS-CoV-2 infected patients (LEOSS) project (https://leoss.net/).

Work package 10: Project Management and coordination

Two coordinators (CB, STS) are responsible for managing the consortium. The whole group meets in bi-weekly video conferences where regular updates of the work packages are discussed as well as all upcoming issues of the project. In addition, a small group of consortium members meets weekly and develops the guidance supporting work package 8.

Data management

Research data from qualitative and quantitative surveys of patients, relatives and providers (including pandemic boards and stakeholders) on their experiences from the SARS-CoV-2 pandemic regarding palliative care provision will be collected. The project will generate several different datasets that require the development of a data model sensitive to the different methods of data collection and data coding. The IT infrastructure and data management will be set up by the responsible work package lead. Research data will be collected, secured and stored by each responsible network partner according to existing guidelines.

Participants who do not agree to data handling as described in the informed consent form will not be enrolled into the study.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Disclaimer:

This article is autogenerated using RSS feeds and has not been created or edited by OA JF.

Click here for Source link (https://www.biomedcentral.com/)