On 2016 Aug 19, Stephanie Sivell commented:

Dear H Benalia and N Novell,

Thank you for the comments from your team. Like you and your colleagues in the Cicely Saunders Institute, we also felt this to be an important and underrepresented area of the literature. A key remit of the Marie Curie Palliative Care Research Centre (MCPCRC), Cardiff is to advance the research methodology within the field of palliative and end of life care. Our discussion, and the resulting paper, was an opportunity to explore the issues our colleagues were regularly facing and reflecting upon. As methodologists within each of our varying disciplines in the MCPCRC (also co-authors of our paper), we thought that it was timely to come together as a team to discuss these issues and document them. We hoped that our paper would resonate with our colleagues in the wider academic community both within the world of palliative and supportive care and more generally in health and social care. We were therefore delighted that you and your team not only took the time to read and critique our paper in your journal club, but also shared your thoughts to widen up the debate.

By ‘consensus’ we were referring to the definition of a general agreement; we were not aiming to undertake a ‘rigorous’ piece of work, collecting primary data etc., and/or undertaking some kind of adapted Delphi or similar. This was simply beyond the parameters of this discussion. Rather, and as our paper describes, this was a discussion which we felt was something important for our team to reflect upon and potentially benefit from. We also felt that if we were having these thoughts and concerns within the MCPCRC, then the wider academic community are likely to encounter similar issues and conversations. Ethical approval therefore, was not required but we sought consent for the recording of the discussion; furthermore, and as required by the governance of the journal, we documented the roles of all co-authors who were also part of the discussion which stimulated the resulting paper. We were also interested in your thoughts on comparing interview settings. Again, this was not possible within the parameters of our discussions and our paper, but we would be interested in any papers which specifically focus on such issues in their work.

As is often the case, we were limited by the house style of the journal we submitted our manuscript to, not least of all the word limits. That being said, we did attempt to summarise the key issues to at least give the reader a flavour of each aspect we have discussed in the paper and addressing all issues raised by the peer reviewers, including practical and safety issues. We did offer quite a detailed account of such issues, within the boundaries of the journal’s requirements; that being said we also did not feel that reviewers and readers would be interested in minutia of how to develop a protocol per se. However, we would be more than happy to extend this discussion should there be any specific queries concerning health and safety issues and practice amongst our researchers.

We look forward to extending the discussion and debate; we welcome and encourage our colleagues undertaking qualitative palliative and end of life care, and beyond, to discuss and reflect upon their own experiences of undertaking qualitative research interviews.

Regards,

Dr Stephanie Sivell, Dr Emily J Harrop and Dr Annmarie Nelson on behalf of the Marie Curie Palliative Care Research Centre, Division of Population Medicine, Cardiff University.

On 2016 Aug 03, Cicely Saunders Institute Journal Club commented:

The Cicely Saunders Institute journal club discussed this paper on 03/08/2016

Considerations around conducting qualitative interviews with palliative and end of life care patients, particularly in the home setting, is an important and underrepresented area of the literature.

We enjoyed discussing this paper and felt it raised some important questions. We were particularly interested in the methods, and felt that more information would have been valuable. For example how were participants for the consensus meeting chosen, what topics were selected for discussion and how these were selected/ shortlisted, levels of agreement and consensus, and area of discordance during the discussion, ethical approval and consent processes prior to the meeting, and at what point consensus was reached (was this during or after the meeting)? A section detailing limitations of this research would be helpful when interpreting the results.

We had an interesting discussion around potential conflicts of interest that might arise when all participants of a consensus group are authors of a subsequent publication, and we are not aware of any evidence around this? During our journal club we discussed many of the benefits of conducting interviews in participant’s home setting, which might have been interesting to emphasise more in the paper. Practical issues and the importance of safety are areas that require consideration when planning and conducting research in home settings, and we would have been interested to see more discussion of this. We thought it might also be helpful to compare interviews settings (hospital, hospice, home, etc) and highlight key differences.

Commentary by H Benalia & N Lovell

On 2016 Aug 03, Cicely Saunders Institute Journal Club commented:

The Cicely Saunders Institute journal club discussed this paper on 03/08/2016

Considerations around conducting qualitative interviews with palliative and end of life care patients, particularly in the home setting, is an important and underrepresented area of the literature.

We enjoyed discussing this paper and felt it raised some important questions. We were particularly interested in the methods, and felt that more information would have been valuable. For example how were participants for the consensus meeting chosen, what topics were selected for discussion and how these were selected/ shortlisted, levels of agreement and consensus, and area of discordance during the discussion, ethical approval and consent processes prior to the meeting, and at what point consensus was reached (was this during or after the meeting)? A section detailing limitations of this research would be helpful when interpreting the results.

We had an interesting discussion around potential conflicts of interest that might arise when all participants of a consensus group are authors of a subsequent publication, and we are not aware of any evidence around this? During our journal club we discussed many of the benefits of conducting interviews in participant’s home setting, which might have been interesting to emphasise more in the paper. Practical issues and the importance of safety are areas that require consideration when planning and conducting research in home settings, and we would have been interested to see more discussion of this. We thought it might also be helpful to compare interviews settings (hospital, hospice, home, etc) and highlight key differences.

Commentary by H Benalia & N Lovell

On 2016 Aug 19, Stephanie Sivell commented:

Dear H Benalia and N Novell,

Thank you for the comments from your team. Like you and your colleagues in the Cicely Saunders Institute, we also felt this to be an important and underrepresented area of the literature. A key remit of the Marie Curie Palliative Care Research Centre (MCPCRC), Cardiff is to advance the research methodology within the field of palliative and end of life care. Our discussion, and the resulting paper, was an opportunity to explore the issues our colleagues were regularly facing and reflecting upon. As methodologists within each of our varying disciplines in the MCPCRC (also co-authors of our paper), we thought that it was timely to come together as a team to discuss these issues and document them. We hoped that our paper would resonate with our colleagues in the wider academic community both within the world of palliative and supportive care and more generally in health and social care. We were therefore delighted that you and your team not only took the time to read and critique our paper in your journal club, but also shared your thoughts to widen up the debate.

By ‘consensus’ we were referring to the definition of a general agreement; we were not aiming to undertake a ‘rigorous’ piece of work, collecting primary data etc., and/or undertaking some kind of adapted Delphi or similar. This was simply beyond the parameters of this discussion. Rather, and as our paper describes, this was a discussion which we felt was something important for our team to reflect upon and potentially benefit from. We also felt that if we were having these thoughts and concerns within the MCPCRC, then the wider academic community are likely to encounter similar issues and conversations. Ethical approval therefore, was not required but we sought consent for the recording of the discussion; furthermore, and as required by the governance of the journal, we documented the roles of all co-authors who were also part of the discussion which stimulated the resulting paper. We were also interested in your thoughts on comparing interview settings. Again, this was not possible within the parameters of our discussions and our paper, but we would be interested in any papers which specifically focus on such issues in their work.

As is often the case, we were limited by the house style of the journal we submitted our manuscript to, not least of all the word limits. That being said, we did attempt to summarise the key issues to at least give the reader a flavour of each aspect we have discussed in the paper and addressing all issues raised by the peer reviewers, including practical and safety issues. We did offer quite a detailed account of such issues, within the boundaries of the journal’s requirements; that being said we also did not feel that reviewers and readers would be interested in minutia of how to develop a protocol per se. However, we would be more than happy to extend this discussion should there be any specific queries concerning health and safety issues and practice amongst our researchers.

We look forward to extending the discussion and debate; we welcome and encourage our colleagues undertaking qualitative palliative and end of life care, and beyond, to discuss and reflect upon their own experiences of undertaking qualitative research interviews.

Regards,

Dr Stephanie Sivell, Dr Emily J Harrop and Dr Annmarie Nelson on behalf of the Marie Curie Palliative Care Research Centre, Division of Population Medicine, Cardiff University.