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Table 3 Measures for handling distress and sensitive issues

From: Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

1. Written protocol for dealing with queries and distress
   This was made available to those involved in information giving and interviewing (members of the research team, the PI Department's administrative team, the ONS team) so they carry out these tasks sensitively, with attention to any distress (potential or real), and handling this appropriately;
2. Communication log record
   Conversations maintained with people approached for the study (or with anyone on their behalf) or with individuals requesting for information about the study (e.g. via website feedback form) are recorded to facilitate review, as need be;
3. Screening for need to follow-up
   A member of the research team reads and checks the questionnaire soon after its arrival, particularly the responses to questions on grief intensity, to screen for cases which may require follow-up action. Should the participant agree to be contacted and write down in the questionnaire her/his contact details, the researcher makes contact to ascertain the impact and effect of the questionnaire on the participant, and to direct to sources of help if appropriate. The researcher approaches this with sensitivity and handles any distress appropriately.
◦ If specific concerns arise, the researcher informs the participant about sources of local support and asks the participant if s/he wishes to be given the contact details or if he/she would like the researcher to contact local services for contacts/visits to be arranged;
◦ If the researcher has a high level of concern about a participant (e.g. if the researcher suspects a participant is very depressed and possibly suicidal) this is discussed as a matter of urgency with the PI, who is a Consultant in Palliative Medicine with extensive clinical experience of working with distressed family members and addressing their distress, to proceed with appropriate action to further assist and aid the participant in question, if this is felt appropriate. Complaints are regarded as situations of high level of concern and treated in the same manner.