2.2 Ethical Considerations

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2.2 ethical considerations the investigation conforms with the principles outlined in the declaration of Helsinki (19) the regional ethical review board in NN, Sweden, approved the study (LU 2011/364) permission to contract informants was given by the director of the PAH center. All the participants were given written and oral information about the study and its purpose, and all were informed that they could withdraw at any time without explanation or consequence. Furthermore, they were assured that the material would be treated as strictly confidential. All participants signed a written consent letter. So as not to abandon the patients with their thoughts after interviews, the patients were given the opportunity to contact a social worker. …show more content…

The face to face interviews were semi structured and covered the following topics, (a) demographic details such as education and marital status, and (b) questions about information and support. The introductory question was (lease tell me about your experience and needs of information, communication or education in connection with PAC or CTEPH, a question about their experience of support in connection with PAH or CTEPH was also asked (the result is reported elsewhere) follow up questions were asked in order to clarify the narratives and to continues the conversation. In order to secure the content and quality of the interview, the first interview served a s a pilot tst. It was deemed satisfactory and could therefore be included in the study. In the last three interviews no new concepts emerged, which indicated that a sufficient number of interviews had been conducted. The interviews. Conducted between January and October 2012, lasted between 19 and 67 minutes and were conducted either in the home of the patient (10) or at a neutral office in some healthcare facility (7) the interviews were undertaken in a dialogue form and were digitally recorded. a verbatim transcription of each interview was later made. The patients had no prior relation to the interviewer

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