Patient participation in decision‐making on the introduction of home respiratory care: who does not participate?

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Abstract
Objectives In this study we examined home respiratory patients' participation in decision‐making on whether to begin home respiratory care therapy, and this participation in decision‐making during the latest visit to the clinic. Subjects and methods The target population consisted of patients who were using home respiratory care devices and who were visiting the outpatient clinics. Postal questionnaires were sent to 4159 patients (40% of respiratory care device users in Finland). A total of 3336 answered (response rate 80%) and 3153 were eligible for analysis. Odds ratios, chi‐square tests, Mann–Whitney U‐test and stepwise logistic regression analysis were used in the data analyses. Results Patients who did not participate in decision‐making were more frequently older people, women and had lower income than the other patients. While these results parallel those of previous studies, in contrast we found more women with high education to be non‐participants. Non‐participants were not participating in decision‐making during their latest visit to the clinic in spite of the fact that they considered participation almost as important as did the other patients. Non‐participants were less satisfied with the quality of care given and felt that their life had improved less than did the other patients. Conclusion The ethical principle of equal opportunities to participate in care decisions was not applied among home respiratory care patients in this study. The results challenge health‐care professionals to notice inequalities and improve their practices. The results can be generalized to all home respiratory care patients in Finland.