Barriers to user participation in home-based dementia care in Norway; the perspectives of professional caregivers

ABSTRACT

Professional caregivers are aware that current best practice is to allow patients to make as many decisions as they can about their care, and yet they run up against a variety of barriers that keep them from allowing this to happen. The study explored the barriers to user participation as perceived by professional caregivers in home care. Twelve professional caregivers in Norwegian home care were interviewed. The interview data were thematically analysed. The results showed the following barriers to user participation: Patients are too ill, user participation collides with beneficence and non-maleficence, lack of background information, conflicting interests between patients and family caregivers, and organization of services. The study highlights how lack of understanding of the concept can lead to a normative application of user participation, which can put the patients’ safety at risk. In order to enable user participation for people with dementia, professional caregivers need knowledge of how to enable it. This requires time, professional autonomy, and clinical judgement. We argue that user participation should not impede care, but be an important part of it.

KEYWORDS:

• User participation
• decision-making
• dementia
• professional caregivers
• home-based dementia care

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. A dementia team is a multidisciplinary team working with early diagnostics and assessing and applying for proper health services. The dementia teams have close cooperation with home care, nursing homes, day care centres and the GPs.

Additional information

Funding

This work was supported by the EkstraStiftelsen Helse og Rehabilitering [2014/FOM5637].