Table 3

Benefits and barriers to participation in palliative and end-of-life care research, and recommendations to facilitate participation

Benefits (positive aspects)Barriers (negative aspects)Recommendations
  • Improve things for other patients and carers

  • Raising awareness

  • Advocating for change

  • Increasing healthcare professional understanding

  • Feeling overwhelmed by the situation

  • Taking the focus away from the patient

  • Participation not seen as relevant to self

  • Practical barriers

  • Aim and requirements of the study are clear

  • Offer a summary of the research findings

  • Respect participants and listen to them (treat them as people, not participants)

  • Be sensitive in tone and language used.

Benefits for themselves
  • Emotional insight and support

    • Feeling supported and reassured

    • Gave a sense of hope

  • Having someone independent to talk to

    • Validation of the caring role

  • Gaining practical insight and access

  • Reminded of being a patient

  • Unmet needs

  • Disappointment

    • Disappointment for self

    • Participation of others

Appreciating the researcher’s role from the participants perspective
  • If possible, provide additional information about local services available for them

  • Where possible, be flexible in the timing and methods of data collection