Patient Participation in Rehabilitation Questionnaire (PPRQ)-development and psychometric evaluation.

STUDY DESIGN: A cross-sectional postal questionnaire study. OBJECTIVES: The aim of the study was to evaluate selected psychometric properties of a draft version of the Patient Participation in Rehabilitation Questionnaire (PPRQ) measuring patients' experiences of participation in care and rehabilitation. SETTING: Sweden. METHODS: On the basis of previous qualitative analyses of patient interview data, a 32-item questionnaire covering five domains of participation was developed and sent to 268 persons with spinal cord injury, aged 18-80 years and injured 1-12 years previously. In total, 141 (51%) evaluable questionnaires were returned. Multi-trait analysis was used to assess scaling assumptions by testing item convergent and discriminant validity and internal consistency reliability (Cronbach's α) associated with the hypothesized item-scale structure of the questionnaire. RESULT: Nine items failed to meet scaling assumptions and were omitted. Scaling assumptions were thereafter substantiated for the scales: 'respect and integrity' (6 items); 'planning and decision-making' (4 items); 'information and knowledge' (4 items); 'motivation and encouragement' (5 items); and 'involvement of family' (4 items). Item-scale correlations ranged from 0.67 to 0.85 and most items correlated higher or significantly higher with their hypothesized scale than with other scales. Cronbach's α was 0.89 for all scales. CONCLUSION: The PPRQ appears to adequately assess central aspects of participation in care and rehabilitation from the perspective of patients with spinal cord injury. Further studies using larger samples will be undertaken to confirm the scale structure as well as the sensitivity and responsiveness of the questionnaire.

Patient participation in care and rehabilitation from the perspective of patients with spinal cord injury.

STUDY DESIGN: Qualitative method, semi-structured interviews. OBJECTIVES: The aim of the study was to explore the meaning of patient participation in care and rehabilitation from the perspective of patients with spinal cord injury (SCI). SETTING: Post discharge community setting. METHODS: Semi-structured interviews were performed with 10 persons with SCI representing different ages, gender and levels of injury. All interviews were conducted individually and lasted 40-120 min. The interviews were verbally transcribed and the data were analyzed by means of content analysis. RESULTS: All informants stressed the importance of patient participation as a necessary prerequisite for successful care and rehabilitation, but emphasized that participation must be tailored to each patient's own preferences, capacities and needs. They also underscored that the staff should be sensitive and responsive to the fact that desired levels and kinds of participation may vary from patient to patient, as well as for the same patient during the course of the rehabilitation. Five themes reflecting central aspects of participation emerged: respect and integrity, planning and decision-making, information and knowledge, motivation and encouragement, and involvement of family. CONCLUSIONS: Patient participation is a critical component of successful SCI rehabilitation and must be facilitated, promoted and tailored to each patient by the staff. Based on the finding from this study a questionnaire has been developed for assessing patient experiences of five domains of participation in rehabilitation to serve as a tool to help in evaluating provided care and in identifying patients' preferences for participation.