Consumer Perspectives on the Barriers to Timely Palliative Care Access: A Mixed Methods Study

To identify the barriers to timely access to palliative care from the perspective of Australian inpatients and their families.

A co-designed mixed methods study with an equal status explanatory design (QUAN ➔ QUAL).

Quantitative data were collected in Phase 1 via surveys to assess participants' knowledge and experience of palliative care. In the second phase, qualitative data were obtained via semi-structured interviews to explore participants' perceptions of palliative care and to identify barriers to palliative care.

A total of 194 complete patient survey responses and 52 family/visitor responses were received. Mean self-rated knowledge of palliative care was slightly higher than self-rated knowledge of end-of-life care in both groups. Patient respondents scored a mean of 9.3 out of 13 on the Palliative Care Knowledge Scale and family visitor respondents had a mean score of 9.7. Statistically significant differences in the mean Palliative Care Knowledge scores were found when patient and family respondents reported being familiar with palliative care. A total of 11 patients and nine family members participated in an interview in Phase 2. Three main themes and nine subthemes were identified. The three main barriers were Communication, Knowledge and Perceptions, and Accessibility.

Patients and family members perceived a range of barriers to palliative care at the individual, health professional, and system level. These findings highlight areas where targeted interventions should be developed to improve timely access to palliative care.

While the perspectives of health professionals are well known, the perceptions of patients and families on the barriers to palliative care are underreported. A wide variety of complex issues that could impede timely access to palliative care were identified at the individual, health professional and system level. Health consumer perspectives are essential to fully understanding the barriers to palliative care access. The findings of this research can be used to inform future interventions to improve access to palliative care.

Good Reporting of A Mixed Methods Study (GRAMMS) checklist (Data S2) (O'Cathain et al., 2008).

The study was guided by a steering group of health consumers and health professionals working in partnership with the research team through all stages of the research process.