Table 1 Summary of themes and suggested solutions

Ethical issues: participant

Recruitment shortly after significant diagnosis

Treating doctor assessed participant prior to approach by researcher.

Approached participants sensitively in order to build trust and develop relationships over long term

Blurring of boundaries as relationships develop

Agreed plans to manage participant initiated contact about e.g. their treatment or health status (researchers did not give advice but referred participant to relevant health professional)

Potential for patients to become unwell or die during study

Written distress policy for participants and the research team in place

Ongoing consent recorded over the life of the project

Ethical issues: researcher

Developing relationships over time

Prepared researchers to manage difficult topics and emotions during the interview, and how management might change as relationships deepen

Closure of relationships

Developed a supportive network for researchers (e.g. debriefing sessions post interview)

Confidentiality – and sharing data over large research teams

Written procedures for managing ad-hoc or informal contacts with participants.

Developed clear data transfer and management plans

Management of participant fatigue in interviews

Ensure as the interview schedule changes due to new emerging topics that it is not over burdensome. Find new ways to ask questions to avoid repetition (do not merely add more questions)

Involvement of service users in study design

Recruitment and retention of participants

Some groups of patients had high levels of attrition due to natural history of disease

Checked health status of participants before contacting them prior to next interview to ensure this was done sensitively

Careful thought should be given to heterogeneity of the sample. The time points at which data is collected may have to be managed differently for sub-groups

Time

At what time points should data be collected?

We made a pragmatic decision about this and time points were the same for all participants.

It may be more relevant to identify time points by key transitions in the patient’s journey or by consideration of previous literature or informed by theory

Time should be explicitly included in the interview – to include changing illness perceptions

Looking forwards and backwards in interviews moves away from linear notions of time

Encourage reflexivity in the participant as well as the researcher

Asking participants to reflect on their experience from the previous interview

Data collection and management of resources

Management of time and resources – when working with a large data set

Ensure adequate time is included in project plans for project management and communication with participants

Funding for LQR

Work with the funding bodies to consider LQR

Research focus and topic guide evolves over time

Flexibility, openness and responsiveness to the data and emerging analysis and interpretation is a key skill for the LQR researcher

Ask for advice about how to manage this from an ethics committee

Analyzing data

LQR data sets are large and complex and can be analyzed in multiple ways from different perspectives

Ensure adequate time to analyze data between interviews – even if analysis is preliminary

Consider analysis of data within each case and as comparison between cases

Consider if and how subgroups should be analysed – is there a strong theoretical or practical reason why some groups should be analysed separately?

Consider the contribution of a number of different analysis strategies to the data and their strengths and weaknesses

Consider analysing data in a number of different ways, to add alternative understandings of longitudinal data