RESUMEN
Despite widespread recommendations for involving patient research partners (PRPs), there is little information about how patients have been involved in research. Our aim was to describe and assess the contributions of four PRPs in a project on communication-skills training funded by Deutsche Rheuma-Liga Bundesverband e.â¯V. (German League Against Rheumatism [GLR] is a patient organisation for people with rheumatic and musculoskeletal diseases). The PRPs' participation was beneficial with regards to content and organisation. Thanks to their participation, we could enlarge our sample by over a third, and they contributed their own ideas to the training. Four PRPs added their perspective of various regional organisations. Outside this project, they were also very active within GLR and experienced in managing their rheumatic disease. To achieve more representativeness, future studies might also employ strategies to engage individuals with less experience in dealing with their disease, e.g. newly diagnosed patients. While the collaboration between PRPs and researchers proved very successful, more regular discussions about tasks and responsibilities would be worthwhile.
Asunto(s)
Comunicación , Enfermedades Musculoesqueléticas , Enfermedades Reumáticas , Humanos , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/terapiaRESUMEN
OBJECTIVE: The aim of the present study is to describe and analyse significant factors of disease-related everyday communication of persons with RMDs in a nationwide project in Germany funded by the Deutsche Rheumaliga Bundesverband e.V. (German League against Rheumatism). METHODS: In this participatory research project four persons with RMDs are involved. An online questionnaire addressing context, difficulties, and burden of disease-related everyday communication was answered by 1.015 persons with RMDs. Social and communication skills were recorded by questionnaires to capture social insecurity and patient communication competence. RESULTS: More than half of the participants reported difficulties in disease-related conversations across various situations. The majority of these persons suffer from this experience particularly in conversations at the work environment or with staff members of authorities. They feel unconfident especially in situations which require saying "no". Furthermore, compared to the general population persons with RMDs have more anxiety about contact with others. CONCLUSION: Strengthening the social skills of persons with RMDs in conversations related to everyday situations can promote a self-determined life and contribute to the maintenance of social participation. PRATICE IMPLICATIONS: Based on the results, a communication skills training for persons with RMDs will be developed.
Asunto(s)
Comunicación , Enfermedades Musculoesqueléticas/psicología , Enfermedades Reumáticas/psicología , Participación Social , Adolescente , Adulto , Anciano , Investigación Participativa Basada en la Comunidad , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
STUDY OBJECTIVE: The current practice of dealing with comorbid problematic substance use in non-specialized somatic and psychosomatic rehabilitation centres is described. METHODS: A nationwide survey of rehabilitation centres across all indications was conducted. RESULTS: Incidents related to substance use within the past 12 months were reported by every centre participating in the survey. Even though these incidents occurred rather infrequently, 85% of the respondents stated that the opportunity should be used to address the topic of problematic substance use with all patients. At the same time the issue is discussed controversially by staff members in 42% of the centres, and 29% of the respondents state that there is a need to change the way this issue is dealt with. CONCLUSION: It seems necessary to strengthen the awareness of the problem as well as the professional confidence in dealing with it. In order to support identification of and dealing with problematic substance use, appropriate practice guidelines for the somatic and psychosomatic rehabilitation settings are needed. The present survey constitutes a basis for developing such practice guidelines.