Tillfället gör delaktighet : Patienters och vårdares erfarenheter av patientdelaktighet på akutmottagning. En deskriptiv, metodutvecklande och utvärderande studie

Aim: The overall aim of the present thesis was to examine, develop and evaluate patient participation in emergency department (ED) for promoting the relief of suffering for patients in care relations, from the perspective of patients and caregivers. Method: The explorative studies (I, II) were based on reflective lifeworld approach and analyzed by phenomenographic method. Data were collected from interviews by patients (9) and caregivers (11) about their conception of patient participation in ED. The methodological study (III) performed analyses and were tested for content, construct and criterion validity as well as homogeneity and stability reliability. The sample for study (III, IV) consisted of 356 patients consecutively cared for in EDs in Sweden. In the evaluating study (IV) the questionnaire Patient Participation Emergency Department (PPED) was used. The statistical methods handled were Student’s t-test, one-way ANOVA and Spearman correlation. Findings: The patients’ conception of patient participation means: being acknowledged; struggling to become involved; and having a clear space (I). The caregivers’ conceptions of patient participation can be divided into three different descriptive categories: Caregivers offer the opportunity for participation, Patients demand participation and Mutual participation (II). A 17- item questionnaire was developed. Two separate factor analyses revealed a distinct four- factor solution which was labelled: Fight for participation, Requirement for participation, Mutual participation and Participating in getting basic needs satisfied. Criterion validity presented showed 9 out of 20 correlations equal or above 0.30. Cronbach’s alpha coefficient ranged from 0.63 - 0.84 and test- retest varied between 0.59 and 0.93(III).The results show that patient participation is low in two dimensions (Fight for participation, Participation in getting basic needs satisfied), reasonable in one dimension (Mutual participation), and high in one dimension, Requirement for participation (IV). Conclusions: Participation does occur on occasion when the circumstances are right despite international and national guidelines that lay down the need for patient participation. Patient participation in EDs is perceived when patients are in contact with caregivers and there is space for collaboration in situations of consistency. However, patient participation cannot be offered in a one-sided caring action. In collaboration patient participation contributes to the relief of suffering in the process of health and patients participate when they are allowed to be the point of departure for caring. However, the results point to a lack of strategy for patient participation and for increased patient participation to take place improvements in external organization requirements are required. The results indicate an amplified clarity in how patient participation can be understood for EDs, in education and community and a scientific tested instrument has made it possible to evaluate patient participation