Measuring next of kin's experience of participation in the care of older people in nursing homes

Abstract

Background: Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes.

Objective: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes.

Methods: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis.

Results: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances).

Conclusion: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention.

Trial registration: The KUPA project has Clinical Trials number NCT02708498.

Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1. Conceptualization and operationalization (37 items) of the Next of Kin Participation in Care questionnaire.

Fig 2. Flowchart illustrating the inclusion procedure of next of kin in this study.

Fig 3

Distribution of next of kin (upper panel, n = 211) and the item category thresholds (lower panel), for Communication and Trust (CaT, Panel A), Collaboration in Care (CiC, Panel B), and Next of Kin Participation in Care subtests (NoK-PiC, Panel C) on the common logit metric (x-axis; positive values = higher level of CaT/CiC/NoK-PiC). Thresholds are locations at which there is a 50/50 probability of a response in either of two adjacent categories.

Fig 4. Response category functioning for each item.

Borders between the respective areas (colors) are logit threshold locations on the Communication and Trust (CaT, Panel A), and Collaboration in Care (CiC, Panel B) continuum (x-axis; positive values = higher level of CaT/CiC) where there is a 50/50 probability of responding in either of the adjacent response categories.

Fig 5. Revised conceptualization and operationalization (20 items) of the next of Kin Participation in Care questionnaire.

Conversations and information are part of both CaT and CiC.