scholarly journals Narrative medicine to improve the management and quality of life of patients with COPD: the first experience applying parallel chart in Italy

2018 ◽  
Vol Volume 13 ◽  
pp. 287-297 ◽  
Author(s):  
Paolo Banfi ◽  
Antonietta Cappuccio ◽  
Maura Latella ◽  
Luigi Reale ◽  
Elisa Muscianisi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Narrative Medicine

scholarly journals The importance of patient perspectives in pulmonary hypertension

2019 ◽  
Vol 53 (1) ◽  
pp. 1801919 ◽  
Author(s):  
Michael D. McGoon ◽  
Pisana Ferrari ◽  
Iain Armstrong ◽  
Migdalia Denis ◽  
Luke S. Howard ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Market Access ◽  
Clinical Care ◽  
Narrative Medicine ◽  
Individual Level ◽  
Timely Access ◽  
Related Quality ◽  
The Individual

The assessment of objective measurement of cardiopulmonary status has helped us achieve better clinical outcomes for patients and develop new therapies through to the point of market access; however, patient surveys indicate that more can be done to improve holistic care and patient engagement. In this multidisciplinary review, we examine how clinical teams can acknowledge and embrace the individual patient's perspective, and thus improve the care for individual patients suffering from pulmonary hypertension by cultivating the importance and relevance of health-related quality of life in direct clinical care. At the individual level, patients should be provided with access to accredited specialist centres which provide a multidisciplinary approach where there is a culture focused on narrative medicine, quality of life, shared decision making and timely access to palliative care, and where there is participation in education. On a larger scale, we call for the development, expansion and promotion of patient associations to support patients and carers, lobby for access to best care and treatments, and provide input into the development of clinical trials and registries, focusing on the patients’ perspective.

A Longitudinal Investigation of Posttraumatic Growth and Quality of Life in Liver Transplant Recipients

2018 ◽  
Vol 28 (3) ◽  
pp. 236-243 ◽  
Author(s):  
Laura Gangeri ◽  
Marta Scrignaro ◽  
Elisabetta Bianchi ◽  
Claudia Borreani ◽  
Sherrie Bhoorie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Liver Transplant ◽  
Posttraumatic Growth ◽  
Narrative Medicine ◽  
Well Being ◽  
Psychological Disorder ◽  
Transplant Patients ◽  
Quality Of Life Research ◽  
Posttraumatic Growth Inventory

Background: What does it mean to adjust to a liver transplant? Quality of life research has offered an impairment model, defining adjustment as the absence of diagnosed psychological disorder or of limitations in physical functioning. Recently emerging research on posttraumatic growth testifies the prevalence of positive life changes following the life-threatening illnesses. The present study aimed to verify the presence of the posttraumatic growth process in liver transplant patients and its relationship with traditional quality of life. Methods: The research was a longitudinally descriptive study. A sample of 233 liver transplant patients were assessed with the Posttraumatic Growth Inventory and the Functional Assessment of Chronic Illness Therapy General. Results: Over 50% of patients showed moderate-high levels in all dimensions of the Posttraumatic Growth Inventory. Further posttraumatic growth is correlated with the functional and social dimensions of quality of life construct and not with physical and emotional functioning. Conclusion: These results confirmed that posttraumatic growth is related to a different definition of well-being than the one traditionally used in the assessment of quality of life. Adjustment to liver transplant is a complex and systemic process, which requires a multidisciplinary approach to be able to support and encourages adaptation through all the needed functional elements. An interesting perspective is offered by the narrative medicine approach, that highlighted the importance to pay specific attention to the words and expression used by patients related to changes in life and not only to traditional words reporting physical status.

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

Misophonia: An Evidence-Based Case Report

2020 ◽  
Vol 29 (4) ◽  
pp. 685-690
Author(s):  
C. S. Vanaja ◽  
Miriam Soni Abigail
Keyword(s):  
Quality Of Life ◽  
Case Report ◽  
Case History ◽  
Pure Tone ◽  
Physiological Responses ◽  
Evidence Based ◽  
Management Option ◽  
Pure Tone Audiogram

Purpose Misophonia is a sound tolerance disorder condition in certain sounds that trigger intense emotional or physiological responses. While some persons may experience misophonia, a few patients suffer from misophonia. However, there is a dearth of literature on audiological assessment and management of persons with misophonia. The purpose of this report is to discuss the assessment of misophonia and highlight the management option that helped a patient with misophonia. Method A case study of a 26-year-old woman with the complaint of decreased tolerance to specific sounds affecting quality of life is reported. Audiological assessment differentiated misophonia from hyperacusis. Management included retraining counseling as well as desensitization and habituation therapy based on the principles described by P. J. Jastreboff and Jastreboff (2014). A misophonia questionnaire was administered at regular intervals to monitor the effectiveness of therapy. Results A detailed case history and audiological evaluations including pure-tone audiogram and Johnson Hyperacusis Index revealed the presence of misophonia. The patient benefitted from intervention, and the scores of the misophonia questionnaire indicated a decrease in the severity of the problem. Conclusions It is important to differentially diagnose misophonia and hyperacusis in persons with sound tolerance disorders. Retraining counseling as well as desensitization and habituation therapy can help patients who suffer from misophonia.

Quality of Life of Youth With Hearing Loss

ASHA Leader ◽  
2010 ◽  
Vol 15 (15) ◽  
pp. 5-6
Author(s):  
Anne Skalicky ◽  
Brenda Schick ◽  
Donald Patrick
Keyword(s):  
Quality Of Life ◽  
Hearing Loss

Thinking Beyond Language: Intervention for Severe Aphasia

2009 ◽  
Vol 19 (1) ◽  
pp. 15-22 ◽  
Author(s):  
Nina Simmons-Mackie
Keyword(s):  
Quality Of Life ◽  
Communication Training ◽  
Language Intervention ◽  
Specific Training ◽  
Environmental Support ◽  
Total Communication ◽  
Communication Partners

Abstract Purpose: This article addresses several intervention approaches that aim to improve life for individuals with severe aphasia. Because severe aphasia significantly compromises language, often for the long term, recommended approaches focus on additional domains that affect quality of life. Treatments are discussed that involve increasing participation in personally relevant life situations, enhancing environmental support for communication and participation, and improving communicative confidence. Methods: Interventions that have been suggested in the aphasia literature as particularly appropriate for people with severe aphasia include training in total communication, training of communication partners, and activity specific training. Conclusion: Several intervention approaches can be implemented to enhance life with severe aphasia.

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