Table 1.
Eligibility criteria.
| Selection criteria | Inclusion | Exclusion |
|---|---|---|
| Setting | Palliative carea research Palliative care in other settings (e.g. education, service provision) if it relates to involvement at a higher level than the individual patient/carer, includes guidelines or standards, or is a key text of relevance to the review |
Other areas of research Palliative care in service provision at individual level with no involvement No guidelines or standards |
| Perspective | Anyone with experience of patient/carer involvement in palliative care research (e.g. patients, carers, clinicians, academics) | No experience of patient/carer involvement in palliative care research |
| Intervention | Involvement | No involvement |
| Comparison | Not relevant | Not relevant |
| Evaluation | Any evidence on the effects of involvement, either on outcome or process (e.g. impact, benefits, barriers) | None |
| Age | Aged 18 years and older | Aged under 18 years |
| Countries | Evidence concerning Western populations only | Non-Western populations |
| Language | English only | Non-English |
| Type of evidence | Any evidence or literature, including grey literature | None |
| Study/evidence design | Any design, including reviews, qualitative, quantitative, mixed methods, text or opinion | None |
| Publication year | Any year | None |
WHO: World Health Organisation; COPD: chronic obstructive pulmonary disease; MND: motor neuron disease.
Palliative care defined broadly using the Global Atlas of Palliative Care at the End of Life,34 which widened the WHO definition35 to make it more comprehensive. Search terms related to palliative care expanded to include non-communicable life-limiting health conditions most relevant to Western countries34 and to ensure a diverse range of conditions to enable different involvement issues to be explored. The following were used: Alzheimer’s and other dementias, cancer, cardiovascular diseases, chronic respiratory conditions (e.g. COPD), diabetes and neurodegenerative conditions (e.g. Huntington’s, MND, Parkinson’s). Those aged under 18 were excluded because of the additional ethical and other issues raised.