Table 3.
Barriers to researching end of life care and possible solutions
| Barriers | Possible solutions |
|---|---|
| Difficulties in designing studies | |
| Lack of agreed definitions of palliative care, terminal care, and end of life | Researchers to provide definitions to recruiters as part of study documentation |
| Difficulties of specifying/determining prognosis (or difficulty recognising/defining end of life) | Use specific instruments or prognostic guides, or recruit at a stage in illness trajectory not at defined prognosis |
| Variable levels of awareness of diagnosis and prognosis in patients and carers | Explore participants' understanding and language they use to describe the illness, and talk with them at that level |
| Uncertainty about suitable methods | Match methods to research aims, resources, and local context. Consider mixed methods and innovative approaches from other specialties |
| Funding bodies tend to support only tried and tested methods | Encourage researchers from other specialties/methods who have published successfully to participate in palliative care research groups. Researchers should argue case for innovative methods to examine problems associated with traditional research approaches, particularly in relation to hard to reach groups |
| Ethical issues | |
| Staff gatekeeping/ethics committee procedures and attitudes | Work closely with staff and keep them well informed. Clarify that issues around living with illness will be discussed, and sensitive issues will be examined only if patient gives cues. Involve clinical staff in research steering groups |
| Maintaining informed consent in longitudinal studies | Regularly check willingness to maintain consent |
| Doubts among clinicians, ethics committees, and carers about willingness of people at end of life to participate in research | Provide evidence that people want to participate and can do so without harm. Include users in research development and project management |
| Challenges in recruiting participants | |
| Difficulties in recruiting representative range of people at end of life | Use range of recruitment techniques—for example, local media and community groups, health professionals, and innovative methods |
| High attrition rates | Factor in attrition rates of 30-50% for longitudinal studies |
| Emotional challenges | |
| Researchers | Employ experienced researchers; offer training in advanced communication, palliative care induction. Plan interview workload (three a week). Provide debriefing and peer support sessions. Budget for external support and supervision |
| Transcribers | Include debriefing and support sessions as required |