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


METHODS
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.


METHODS
Community setting including urban and rural areas of New Zealand.


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.


CONCLUSIONS
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.
Person Centred Research Centre, Health and Rehabilitation Research Institute, AUT University, Private Bag 92006, Auckland 1142, New Zealand. Electronic address: Kathryn.McPherson@aut.ac.nz.
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KM
McPherson
Person Centred Research Centre, Health and Rehabilitation Research Institute, AUT University, Private Bag 92006, Auckland 1142, New Zealand.
N K
NK
Kayes
Person Centred Research Centre, Health and Rehabilitation Research Institute, AUT University, Private Bag 92006, Auckland 1142, New Zealand.
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N
Moloczij
Person Centred Research Centre, Health and Rehabilitation Research Institute, AUT University, Private Bag 92006, Auckland 1142, New Zealand.
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C
Cummins
D017028:Caregivers; D009520:New Zealand; D036301:Qualitative Research; D019035:Rural Health Services; D012947:Social Work; D019037:Urban Health Services
Carers; Delivery of health care; Disability; Qualitative research; Quality of health care