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      Patient Preference and Adherence (submit here)

      This international, peer-reviewed Open Access journal by Dove Medical Press focuses on the growing importance of patient preference and adherence throughout the therapeutic process. Sign up for email alerts here.

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      Is Open Access

      Living with cystic fibrosis – a qualitative study of a life coaching intervention

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          Abstract

          Background

          Cystic fibrosis (CF) is a chronic, life-shortening disease with a significant treatment burden. To support young adults with CF in their everyday life, we previously conducted a life coaching feasibility trial (published elsewhere). The aim of the current study was to explore how life coaching was experienced by study participants within the context of their lives with CF.

          Methods

          A qualitative study using individual interviews. Respondents (n=14) were recruited from the intervention group after participation in life coaching. Data were analyzed from a phenomenologic-hermeneutical perspective, inspired by Ricoeur’s theory.

          Findings

          Periodic exacerbations of CF led to worry about disease progression, and interrupted the respondents’ ability to fulfill daily life roles satisfactory. The treatment burden demanded self-discipline and this was sometimes at the expense of social life or career. The young adults rarely spoke to others about their situation; therefore, they valued opening up to a professional coach about life and concerns. We identified three themes: 1) living an unpredictable life; 2) the conflict between freedom and the constraints of illness; and 3) the value of telling one’s story. In relation to all three themes, coaching promoted reflection over life situations, reframed thoughts, and facilitated finding new ways to manage everyday life.

          Conclusion

          Life coaching is an intervention that is valued for those who feel challenged by their CF disease. Coaching programs should be designed to include the participants, when they feel a need for coaching and are open for change. Screening parameters to identify persons who will most likely benefit from life coaching are needed.

          Most cited references29

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          How does communication heal? Pathways linking clinician-patient communication to health outcomes.

          Although prior research indicates that features of clinician-patient communication can predict health outcomes weeks and months after the consultation, the mechanisms accounting for these findings are poorly understood. While talk itself can be therapeutic (e.g., lessening the patient's anxiety, providing comfort), more often clinician-patient communication influences health outcomes via a more indirect route. Proximal outcomes of the interaction include patient understanding, trust, and clinician-patient agreement. These affect intermediate outcomes (e.g., increased adherence, better self-care skills) which, in turn, affect health and well-being. Seven pathways through which communication can lead to better health include increased access to care, greater patient knowledge and shared understanding, higher quality medical decisions, enhanced therapeutic alliances, increased social support, patient agency and empowerment, and better management of emotions. Future research should hypothesize pathways connecting communication to health outcomes and select measures specific to that pathway. Clinicians and patients should maximize the therapeutic effects of communication by explicitly orienting communication to achieve intermediate outcomes (e.g., trust, mutual understanding, adherence, social support, self-efficacy) associated with improved health.
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            Ostracism.

            In this review, I examine the social psychological research on ostracism, social exclusion, and rejection. Being ignored, excluded, and/or rejected signals a threat for which reflexive detection in the form of pain and distress is adaptive for survival. Brief ostracism episodes result in sadness and anger and threaten fundamental needs. Individuals then act to fortify or replenish their thwarted need or needs. Behavioral consequences appear to be split into two general categories: attempts to fortify relational needs (belonging, self-esteem, shared understanding, and trust), which lead generally to prosocial thoughts and behaviors, or attempts to fortify efficacy/existence needs of control and recognition that may be dealt with most efficiently through antisocial thoughts and behaviors. Available research on chronic exposure to ostracism appears to deplete coping resources, resulting in depression and helplessness.
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              A phenomenological hermeneutical method for researching lived experience.

              This study describes a phenomenological hermeneutical method for interpreting interview texts inspired by the theory of interpretation presented by Paul Ricoeur. Narrative interviews are transcribed. A naïve understanding of the text is formulated from an initial reading. The text is then divided into meaning units that are condensed and abstracted to form sub-themes, themes and possibly main themes, which are compared with the naïve understanding for validation. Lastly the text is again read as a whole, the naïve understanding and the themes are reflected on in relation to the literature about the meaning of lived experience and a comprehensive understanding is formulated. The comprehensive understanding discloses new possibilities for being in the world. This world can be described as the prefigured life world of the interviewees as configured in the interview and refigured first in the researcher's interpretation and second in the interpretation of the readers of the research report. This may help the readers refigure their own life.
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                Author and article information

                Journal
                Patient Prefer Adherence
                Patient Prefer Adherence
                Patient Preference and Adherence
                Patient preference and adherence
                Dove Medical Press
                1177-889X
                2018
                19 April 2018
                : 12
                : 585-594
                Affiliations
                [1 ]Department of Infectious Diseases, Copenhagen University Hospital, Copenhagen, Denmark
                [2 ]Department of Pediatric and Adolescent Medicine, Center of Adolescent Medicine, Copenhagen University Hospital, Copenhagen, Denmark
                [3 ]Department of Clinical Medicine, Faculty of Medical Sciences, University of Copenhagen, Copenhagen, Denmark
                [4 ]Department of Public Health, University of Copenhagen, Copenhagen, Denmark
                [5 ]Department of Pediatric and Adolescent Medicine, Cystic Fibrosis Center Copenhagen, Copenhagen University Hospital, Copenhagen, Denmark
                Author notes
                Correspondence: Karin Bæk Knudsen, Department of Infectious Diseases, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, Copenhagen 2100, Denmark, Tel +45 3 545 7835, Fax +45 3 545 2975, Email karin.baek.knudsen.01@ 123456regionh.dk
                Article
                ppa-12-585
                10.2147/PPA.S159306
                5916455
                2ea32ab3-fccc-41bf-8942-d900492103b9
                © 2018 Knudsen et al. This work is published and licensed by Dove Medical Press Limited

                The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

                History
                Categories
                Original Research

                Medicine
                phenomenological-hermeneutic methods,adherence,self-determination theory,dialogue,young adults,chronic diseases

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