Table 4

Summary of the key points identified from the survey and focus group

SurveyFocus group
Benefits (positive aspects)The benefits were reflective of the respondents’ experience of why people had participated in their most recent studies (all of the benefits were reported by more than 50% of respondents).These were reflective of their experience of why patients and carers had participated in research. Focus group participants also reported that qualitative research can also have a cathartic benefit and that the researcher can also act as a proxy for feeding back to clinical team on the patient or carer well-being.
Barriers (negative aspects)The feedback on whether identified barriers to participation were reflective of respondent’s experience were more varied and reflected the individual experience of research participation.
  • Practical barriers can also be considered as specific physical, mental and conditional barriers. Contextual barriers are also important to acknowledge.

  • Distress is also a barrier but can often be a motivator for gaining altruistic benefits and improving things for other people in the future.

  • Establishing consent is a particular difficulty in this field of research

  • More than 70% of respondents reported that each recommendation could have improved the experiences of people in their studies.

  • No respondent reported that any of the recommendations would not have been useful.

  • Importance of clear and concise aims and requirements—participants just want to ‘get on with it’.

  • Distress protocols should be in place for safeguarding.

  • Benefits, barriers and recommendations are applicable to most types of research, not specifically always PEoLC.

  • PEoLC, palliative and end-of-life care.