This JOHNLATHAM_ENDOFLIFEQUESTIONNAIREDATA_readme.txt file was generated on 30-03-2022 by JOHN LATHAM



GENERAL INFORMATION

1. Title of Dataset: END OF LIFE QUESTIONNAIRE DATA 

2. Author Information
	A. Principal Investigator Contact Information
		Name: JOHN LATHAM		
		Institution: UNIVERSITY OF LIVERPOOL	
		Address: DEPARTMENT OF CLINICAL PSYCHOLOGY 
		Email: JOHN.LATHAM@LIVERPOOL.AC.UK

	B. Chief Investigator Contact Information
		Name: SARAH BUTCHARD
		Institution: UNIVERSITY OF LIVERPOOL		
		Address: DEPARTMENT OF CLINICAL PSYCHOLOGY 
		Email: BUTCHARD@LIVERPOOL.AC.UK

	

3. Date of data collection: From 01.01.2021 to 14.07.2021

4. Geographic location of data collection: An online anonymous questionnaire was distributed to doctors and nurses who had delivered EOL communication to patients in two trusts in two major cities: a trust in the North West of England, and a trust in the North East of England. A Covid-19 pandemic adaption to the research was to include other local and national networks known to the primary researcher. The distribution was supported by staff within the palliative, psychology, and R&D teams within each of the two main hospital trusts who sent the link to the questionnaire out to hospital teams and managers, as well as through doctor and nurse online networks. 

5. Information about funding sources that supported the collection of the data: The research was not supported by external funding. 


SHARING/ACCESS INFORMATION

1. Licenses/restrictions placed on the data: No restriction on use of the data. Please cite the primary researcher if the data is used within public or private research. 

2. Links to publications that cite or use the data: Pending review. 

3. Links to other publicly accessible locations of the data: N/A

4. Links/relationships to ancillary data sets: N/A

5. Was data derived from another source? NO

6. Recommended citation for this dataset: JOHN S LATHAM (2022). THE IMPACT OF FEAR OF FAILURE ON CLINICAL END OF LIFE CONVERSATIONS AND DECISION MAKING. QUESTIONNAIRE DATA SET COLLECTED FROM JANUARY 21 TO JULY 21. 


DATA & FILE OVERVIEW

1. File List: 
- README FILE, WHICH INCLUDES A KEY FOR IDENTIFYING THE CATEGORICAL DATA CODING
- EXCEL FILE WITH SINGLE SHEET OF DATA 

2. Relationship between files, if important: N/A

3. Additional related data collected that was not included in the current data package: N/A

4. Are there multiple versions of the dataset? NO


METHODOLOGICAL INFORMATION

1. Description of methods used for collection/generation of data: 


1.1 Inclusion criteria 
•	Doctors and specialist nurses who have worked with adult EOL patients. 
•	Those who have access to a computer or smartphone.  
•	Location: The two specified north NHS trusts, or other local and national networks. 
1.2 Exclusion criteria 
•	Individuals who have not had an EOL conversation with a patient in their care. 
•	Clinicians working exclusively with children. 
•	Clinical staff who offer care support but who do not communicate information about EOL prognosis or who are not able to make autonomous decisions about patient treatment. Decision to include only band 6 nurses or above as a result.

1.3 Procedure
Participants were asked to read an information sheet which outlined the objectives of the research, the inclusion and exclusion criteria, their rights as participants, the voluntary nature of the study and the confidentiality of answers and data management. Following this, they were provided with a link to a Qualtrics online questionnaire designed by the researcher. Participants were asked to provide their consent and anonymously complete demographics information (including NHS trust, gender, role, area of specialism, years of experience, and a guestimate frequency of how many EOL conversations they have had per month) and complete three standardised self-report questionnaires. 

1.4 Measures 
The questionnaire contained three elements: the Self-Efficacy in Palliative Care scale (SEPC; as adapted by Mason and Ellershaw (2004), the Thanatophobia Scale (TS) (Merrill, Lorimor, Thornby, & Woods, 1998), and The Performance Failure Appraisal Inventory (PFAI) (D E. Conroy et al., 2002).

Confidence with EOL care: Measured using the Self-Efficacy in Palliative Care scale (Mason & Ellershaw, 2004), which assesses efficacy in communication, patient management and multi-professional teamworking. The SEPC has 23 items, measured on a Visual Analogue scale from ‘Very anxious’ to ‘Very competent’ over 100 units (0-100). Participants are asked to make a mark on a line between these two points to indicate their selection. 

Comfortableness with EOL care: Measured using the Thanatophobia Scale (Merrill et al., 1998), which assesses attitudes towards palliative care. The TS is a seven-point ordinal scale containing seven items, including response options of 1 (strongly disagree) to 7 (strongly agree). 

The SEPC scale and TS have been shown to be valid and reliable assessment scales within clinical staff populations, with Cronbach’s alpha ranges of 0.84 - 0.85 and 0.92–0.95 respectively (Mason & Ellershaw, 2004). 

Within this study, the SEPC and TS questionnaires each began with the statement: ‘Presented are a series of statements that relate to issues and experiences that may be encountered when working with someone in the end stages of life. When answering the questions, we would like you to imagine how you think you would feel in relation to the issues and situations presented.’ 

Fear of Failure: The Performance Failure Appraisal Inventory (PFAI; D E. Conroy et al., 2002) is a Multidimensional Measure of FOF developed from a meta-theory of emotions, examining FOF as a function of person-environment interaction, rather than a trait or state or global experience. It comprises 25 items that measure five dimensions of threat appraisals associated with FOF: (1) fear of shame and embarrassment (FSE); (2) fear of devaluing one’s self-estimate (FDSE); (3) fear of having an uncertain future (FUF); (4) fear of important others losing interest (FIOLI); and (5) fear of upsetting important others (FUIO). The measure uses a five-point scale with response options of -2 (‘do not believe it at all’), 0 (‘believe it 50% of the time’), and +2 (‘believe it 100% of the time’). Within this study, all items are introduced with the phrase ‘In my medical practice…’.


2. Methods for processing the data: 
Data was recorded, anonymised, and contained within the online Qualtrics platform. The anonymous data was then transferred for formatting using Microsoft Excel, and analysed using the open source statistics software Jamovi (The Jamovi project, 2021). Analysis data not included in this data DOI. 

3. Instrument- or software-specific information needed to interpret the data: 
Data can be analysed by all appropriate statistics software. 

4. Standards and calibration information, if appropriate: N/A

5. Environmental/experimental conditions: Anonymous Questionnaire 

6. Describe any quality-assurance procedures performed on the data: 
Before the start of the study, approval was sought from the DClinPsychol Research Committee, within the Department of Clinical Psychology, University of Liverpool, the sponsorship review panel within the University of Liverpool (sponsor ref: UoL001588), the relevant NHS HRA review board (IRAS ref: 289310), and the R&D departments in each partner trust (North West ref: SP0564; North East ref: 289310). All methods were performed in accordance with the relevant guidelines and regulations. Consent from participants was recorded online and held in a secure database. 


Information about participation and the nature of the research was accessible online, at the start of each questionnaire, and participants were required to confirm they understood 
the objectives of this research, the inclusion and exclusion criteria, their rights as participants, the voluntary nature of the study and the confidentiality of answers and data management before they were able to complete the study. 

No person specific identifiable data was captured and downloaded within the study. 

7. People involved with sample collection, processing, analysis and/or submission: 
Project data was generated as part of a Doctorate in Clinical Psychology research project, and therefore was produced independently by John Latham, supported in distribution by the research and development officers in each supporting NHS trust. 

DATA-SPECIFIC INFORMATION FOR FILE: End of life Fear of failure study - Data for supplementary publication file - FEB 22

1. Number of variables (COLUMNS): 

5 X PARTICIPANT VARIABLES
23 X QUESTIONS FOR THE SEPC QUESTIONNAIRE 
7 X QUESTIONS FOR THE THANATOPHOBIA QUESTIONNAIRE 
1 X FREE TEXT BOX RELATING TO EXPERIENCE OF END OF LIFE DURING COVID-19 PANDEMIC 
25 X QUESTIONS FOR THE PFAI (FEAR OF FAILURE) QUESTIONNAIRE

2. Number of cases/rows: 
211

3. Variable List: 
<list variable name(s), description(s), unit(s)and value labels as appropriate for each>

PARTICIPANT VARIABLES:

Q1.1 : NHS TRUST
1= Liverpool Hospitals NHS Foundation Trust
2= York and Scarborough Hospitals NHS Foundation Trust 
3= Other NHS Foundation Trust 

Q1.2: GENDER
1= MALE
2= FEMALE
3= OTHER
4= DO NOT WISH TO SAY

Q1.3: ROLE
1= DOCTOR
2= NURSE
3= OTHER

Q1.4: YEARS OF EXPERIENCE
1= 0-1 	 
2= 1-3 	 
3= 3-5  	 
4= 5-10  	 
5= 10-15  	
6= 15-30  	 
7= 30+  

Q1.5: Estimated number of end of life conversations per month 
1= Less than one  
2= 1-2  
3= 2-5  
4= 5-10   
5= 10-12
6= More than 12  

SEPC QUESTIONNAIRE
Responses were on a sliding scale from 0 to 100, where 0 =  ‘Very anxious’, and 100 = ‘Very competent’

THANATOPOBIA SCALE
Response options of 1 = 'strongly disagree', to 7 = 'strongly agree'

PFAI QUESTIONNAIRE 
The measure uses a five-point scale with response options of -2 = ‘do not believe it at all’, 0 =‘believe it 50% of the time’, and +2 =‘believe it 100% of the time’.


4. Missing data codes: 
N/A

5. Specialised formats or other abbreviations used: 
EOL = END OF LIFE
FOF = FEAR OF FAILURE