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Abstract
Background Improving community palliative care outside of normal working hours is a patient and family priority.
Aim To explore patient and families’ perspectives of four different UK models of out-of-hours community palliative care.
Methods Qualitative semi-structured interviews with patients receiving specialist palliative care and family caregivers. Participants were purposively sampled by model of out-of-hours community care. Models differed on the amount of specialist palliative care available, timing of services, type of care available (advisory or hands-on nursing care) and level of integration between services. Reflexive thematic analysis was used to generate themes and pursue convergence and divergence between the models.
Results 47 interviews with 17 patients, 19 family carers and 11 bereaved carers. Four themes were generated.
‘Feeling known’, participants from all models reported the importance of relational care with professionals. Model A and B participants described the challenge of re–telling their story to different services.
‘Needs understood and met’, Model D increased participants’ confidence to access services that consistently understood and meet their palliative needs. Participants from all models reported the positive impact of skilled professionals.
‘Ease of access to care’, participants from model D reported ease of access in understanding who to contact out–of–hours whereas for models A and B participants had many numbers to call for respective services, with differing availability. This caused confusion and delays in managing care in a crisis.
‘Timely care’, participants from all models described workforce shortages delaying response time and lengths of in–person visits, particularly community nursing provision.
Conclusion Patients’ and families’ experiences of out-of-hours care vary across the UK. A one point of contact service, coordinated by an experienced palliative care nurse with an integrated team enables patients and families to feel safe and confident that they can access consistent holistic care out-of-hours.