Palliative care strategy - lived experiences and public views: research studies - key findings summary

2. Using lived experiences research papers and reports

Research studies using interviews, group discussions and surveys that invite people to describe their experiences tell us what is important for people. This lets us learn from the stories, insights and views of many people who would find it difficult or impossible to take part in other types of public consultations.

We collated and summarised published research papers, reports, and policy briefings with and for the Strategy Steering Group to find out what we know already of the understandings, experiences, and views of members of the public and diverse service users about palliative care. (Appendix 1) We found studies that involved adults with a wide range of serious illnesses and other long term health conditions or disabilities; children, young people and parents; families, carers and bereaved people; and those with protected characteristics including age, gender, sexual orientation, culture, and socio-economic position. We also looked at different places of care – home, care homes, hospitals, hospices/specialist palliative care units, vulnerably housed people, and prisons.

This review of what we already know was updated through a specific Gathering Views Consultation carried out by Healthcare Improvement Scotland (HIS) with 5 key groups: older people, carers, people receiving hospice care, parents and children, and people in rural and island communities. This also enabled us to focus on identified gaps from the evidence review including asking about palliative care being offered much earlier and long before an adult or child is close to dying.

This paper sets out our key findings, followed by further details on what we found out about:

• Knowledge and understanding about palliative care
• Experiences of palliative care for adults
• What matters when someone is dying, caring, or bereaved
• Care planning
• Experiences of children, young people, parents and families