Introduction Carers play a vital role in supporting patients at end-of-life (EOL). EOL care policy promotes comprehensive person-centred assessment/support for carers but without a clear implementation strategy this will only remain an aspiration.
Aim To develop recommendations for organisational structures/processes required for implementation of comprehensive person-centred comprehensive assessment/support for carers in EOL practice.
Secondary analysis of qualitative data on implementation in 36 services to identify factors facilitating/hindering implementation
Expert consultation (focus groups with 19 lead practitioners/hospice managers) to review Stage–1 findings and develop draft recommendations
Wider stakeholder consultation–two professional workshops (23 participants: hospice hospital community policy and academics) online survey (62 participants) and two carer workshops (nine participants) to finalise recommendations.
Results Comprehensive person-centred carer assessment/support requires whole-systems change; a cultural shift at practitioner and organisational level. 10 recommendations identify key structures and processes not normally met by current provision:
Consistent identification of carers within the care setting
Demographic and contextual data on who the carer is and their situation
A method/protocol for assessing carers and responding to assessment
A recording system for carer information (separate from patient data)
A process for training staff about carer assessment/support
Available time/workload capacity for carer assessment/support
Support from senior managers
Pathways for communication about carer assessment/support
Procedures for monitoring/auditing processes and outcomes of carer assessment/support.
Conclusions Comprehensive person-centred carer support requires radical change at different organisational levels. Carers’ fit within service provision also urgently needs clarification. Our 10 recommendations outline necessary building blocks to achieve this change.
Funder Hospice UK and CLAHRC Greater Manchester
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