Next of Kin’s experiences of opportunities and limitations in user involvement: a qualitative study in a rural norwegian municipality

TL;DR

This study explores how family members experience being involved in healthcare for their loved ones in a rural Norwegian town.

Contribution

It provides new insights into the challenges and opportunities next of kin face in user involvement within municipal health services.

Findings

Next of kin struggle for recognition in a system that resists their involvement.

Information access is both an obstacle and a support for meaningful participation.

Bureaucratic systems limit collaboration but also offer potential for improvement.

Abstract

User involvement is a fundamental value in Norwegian health and welfare policies. However, next of kin’s experiences of user involvement in municipal health and care services have not been sufficiently investigated in earlier research, despite the central role of the next of kin. The objective of this study is to explore how next of kin experience the opportunities and limitations of user involvement in municipal health and care services in a rural municipality in Norway.

A qualitative study was conducted using an interpretative phenomenological analysis of interviews with 20 next-of-kin participants (nine women and eleven men aged 38 to 90).

The analysis revealed four main findings: (1) between system resistance and opportunities- the struggle for recognition among next of kin, (2) between silence and support- information as an obstacle and opportunity, (3) between paperwork and collaboration- the limitations and potential of systems, and (4) between pressure and potential- the sense of responsibility in the next of kin role.

The study demonstrates how relational dimensions and access to information are central to meaningful user involvement. The discrepancy between policy ambitions and everyday practice calls for strengthened, relationship-based facilitation strategies within municipal health and care services.