Improving the interface between informal carers and formal health and social services: a qualitative study.

ABSTRACT

BACKGROUND: Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. OBJECTIVE: We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. DESIGN: We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. SETTING: Community setting including urban and rural areas of New Zealand. PARTICIPANTS AND METHODS: Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. RESULTS: Four key themes were derived Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. CONCLUSION: In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience.