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1.
Neurol Sci ; 45(4): 1589-1597, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37919441

ABSTRACT

BACKGROUND: This research aimed to investigate the experience of Neuromyelitis Optica Spectrum Disorders (NMOSD) by integrating the perspectives of patients, caregivers and clinicians through narrative-based medicine to provide new insights to improve care relationships. METHODS: The research was conducted in the second half of 2022 and involved six Italian centres treating NMOSD and targeted adult patients, their caregivers and healthcare providers to collect the three points of view of living with or caring for this rare disease, still difficult to treat despite the pharmacological options. Narratives followed a structured outline according to the time: yesterday-today-tomorrow, to capture all disease phases. RESULTS: Twenty-five patients diagnosed with NMOSD, ten caregivers and 13 healthcare providers participated in the research. Patients reported symptoms limiting their daily activities and strongly impacting their social dimension. We noticed improvements across disease duration, whilst the persistence of limitations was recurrent in patients with longer diagnoses. Caregivers' narratives mainly share experiences of their daily life changes, the burden of the caregiving role and the solutions identified, if any. Healthcare providers defined their role as a guide. CONCLUSION: Limitations in activities are prominent in the lives of people with NMOSD, along with fatigue. Family members are the weakest link in the chain and need information and support. Healthcare professionals are attentive to the helping dimension.


Subject(s)
Narrative Medicine , Neuromyelitis Optica , Adult , Humans , Neuromyelitis Optica/diagnosis , Family , Caregivers , Fatigue , Aquaporin 4
2.
J Multidiscip Healthc ; 16: 3629-3640, 2023.
Article in English | MEDLINE | ID: mdl-38034877

ABSTRACT

Background: Understanding health-seeking behaviors of caregivers is important to reduce child mortality. Several factors influence decision-making related to childhood illnesses. Objective: The objective of this study was to gather caretaker narratives to develop a comprehensive understanding of the context and process of caregiving at household level during all stages of an episode of diarrhea and pneumonia in children <5. Methods: Using a narrative interview approach, stories from caregivers of children <5 were collected from a rural district in Sindh Pakistan. Eleven households with children <5 were randomly selected and purposive sampling was done to interview 20 caregivers. All data collection was conducted privately in participants' homes and informed consent taken. Manual content analysis was carried out by three independent researchers and emerging themes drawn. Results: The role of joint family system is integral in making decisions and the child's paternal grandmother, is an important and trusted source of information regarding child sickness in the household. They often promote home remedies with considerable authority prior to formal consultation with the health care system. Caregivers were generally dissatisfied with doctors in the public sector who were perceived to be providing free consultation with a poor quality of care and long waiting time as compared to private doctors. Financial considerations and child support were favorably addressed in households with a joint family system. Conclusion: The joint family system provides a strong support system, but also tends to reduce parental autonomy in decision-making and delay first contact with formal health providers. Prevalent home remedies, and authority of elders in the family influence management practices. Interventions for reducing improving child mortality should be cognizant of the context of decision-making and social influences at the household level.

3.
BMJ Open ; 12(10): e052744, 2022 10 10.
Article in English | MEDLINE | ID: mdl-36216417

ABSTRACT

OBJECTIVE: This research aimed to investigate the experience of major depression by integrating the perspectives of patients, caregivers and healthcare providers through narrative-based medicine (NBM) to provide new insights to improve care relationships. DESIGN AND SETTING: The research was conducted in 2019 and involved five Italian psychiatric centres and targeted adult patients, their caregivers and healthcare providers to address data source triangulation. A sociodemographic survey and a narrative plot, based on Natural Semantic Metalanguage were collected. Narratives were analysed through NBM classifications, NVivo software and interpretative coding. PARTICIPANTS: Thirty-six patients with a diagnosis of major depression, 27 caregivers and 33 healthcare providers participated in the research. RESULTS: Among the 96 collected narratives, 'lonely' was the word patients used most frequently, while 'sad' and 'lifeless' were used most respectively by caregivers and healthcare providers. A positive care relationship was crucial for 84% of patients in relation to their care pathway, and nature (36%) and the arts (28%) were the most frequent resources. Caregivers expressed feelings of powerlessness and inadequacy, and 21% of them reported a declining social life while providing care to a loved one with depression. Thirty-one percent of mental health professionals experienced difficulties in their first encounter with patients; however, their emotions progressively moved towards trust and satisfaction. Furthermore, 89% of patients and healthcare providers and 58% of caregivers evaluated writing the narrative to be a positive experience. CONCLUSION: Findings suggested the possible role for language in understanding major depression, thereby improving care relationships between patients and physicians. Care pathways might also be more attentive to caregivers, to reduce their risk of burnout. Finally, narrative medicine could be integrated with the care pathway as an additional space of expression, dialogue, reflection and development of empathy.


Subject(s)
Caregivers , Depressive Disorder, Major , Adult , Caregivers/psychology , Depression/psychology , Health Personnel/psychology , Humans , Narration
4.
Article in English | MEDLINE | ID: mdl-35954724

ABSTRACT

The study retraces the healthcare pathway of patients affected by diabetic macular edema (DME) through the direct voice of patients and caregivers by using a "patient journey" and narrative method approach. The mapping of the patient's journey was developed by a multidisciplinary board of health professionals and involved four Italian retina centers. DME patients on intravitreal injection therapy and caregivers were interviewed according to the narrative medicine approach. Narratives were analyzed through a quali-quantitative tool, as set by the narrative medicine method. The study involved four specialized retina centers in Italy and collected a total of 106 narratives, 82 from DME patients and 24 from caregivers. The narratives reported their difficulty in identifying the correct pathway of care because of a limited awareness of diabetes and its complications. Patients experienced reduced autonomy due to ocular complications. In the treatment of diabetes and its complications, a multidisciplinary approach currently appears to be missing. DME reduces the quality of life of affected patients. The narrative medicine approach offers qualitative and emotional patient-guided information. The patient journey provides all of those involved in the management of DME with flowcharts to refer to, identifying the critical points in the healthcare journey of DME patients to improve the management of the disease.


Subject(s)
Diabetes Mellitus , Diabetic Retinopathy , Macular Edema , Narrative Medicine , Diabetic Retinopathy/therapy , Humans , Intravitreal Injections , Macular Edema/complications , Macular Edema/therapy , Quality of Life
5.
Eye (Lond) ; 36(1): 182-192, 2022 01.
Article in English | MEDLINE | ID: mdl-33674730

ABSTRACT

OBJECTIVES: To investigate the real-life experience of patients affected by neovascular age-related macular degeneration (nAMD), in the healthcare pathway for the management of the disease, using a "patient journey" and narrative method approach. METHODS: The patient journey of subjects affected by nAMD was designed using a process-mapping methodology involving a team from 11 Italian centres. Subsequently, narratives were collected from nAMD patients and family members. The interviews were analyzed using the narrative medicine methodology. RESULTS: Eleven specialized retina centres across Italy were involved and 205 narratives collected. In 29% of cases, patients underestimated their symptoms or attributed them to non-pathological causes, thus delaying the specialist consultation. The delay in accessing to care was due to a lack of awareness of this disease (50% of the participants didn't know what nAMD is) and to critical issues faced at first visit (long waiting lists, failed diagnosis, underestimation of the problem). Despite anti-VEGF therapies were perceived as effective in improving or stabilizing vision in 91% of narratives collected, 77% of patients still reduced or ceased daily activities such as reading and driving. Within the pathway of care there was not a multidisciplinary approach, and the patients were treated just by the ophthalmologist. CONCLUSIONS: nAMD may significantly affect the quality of life of affected patients, both from a functional and psychological point of view. The narrative medicine approach highlights some critical points in the healthcare journey of nAMD patients and represents a useful background in implementing patient management algorithms and pathways of care.


Subject(s)
Macular Degeneration , Narrative Medicine , Wet Macular Degeneration , Angiogenesis Inhibitors/therapeutic use , Humans , Intravitreal Injections , Macular Degeneration/drug therapy , Quality of Life , Ranibizumab/therapeutic use , Vascular Endothelial Growth Factor A/therapeutic use , Wet Macular Degeneration/diagnosis , Wet Macular Degeneration/drug therapy
6.
Int J Chron Obstruct Pulmon Dis ; 16: 2181-2201, 2021.
Article in English | MEDLINE | ID: mdl-34335023

ABSTRACT

Purpose: The COVID-19 pandemic has disrupted many lives, including those of people suffering from chronic obstructive pulmonary disease (COPD) and their caregivers. The main aim of this study was to use narrative medicine, a validated approach promoting quality of care to explore how the COVID-19 pandemic impacted the quality of care, quality of life, psychological factors and social factors of people affected by COPD and their caregivers and healthcare professionals (HCPs). A secondary aim was to explore the role of telemedicine in combating isolation and providing access to care. Methods: A cross-sectional observational narrative medicine study was conducted between July and November 2020 across Italy. An online semi-structured questionnaire with a narrative plot was completed by 146 participants (79 COPD patients, 24 caregivers, and 43 HCPs). Narrations were analyzed with descriptive statistics and evaluated using NVivo 11 software to break down the text and identify recurring themes and major semantic clusters. Results: During the first lockdown, 58.22% of responses from COPD patients indicated terror, fear and/or apprehension; at reopening, this figure was 35.44%. Among caregivers, these figures were 100% at first lockdown and 45.83% at reopening. The metaphors most commonly used by patients to describe COPD and COVID-19 were monster and murderer, respectively. Patients described their homes more often as clean and lonely than as offering no shelter. The narratives of 42 COPD patients (45.2%) described coping. Only 12.6% of COPD patients reported regular access to medical visits during lockdown, while 59.1% of general practitioners and pulmonologists reported using telemedicine, which was perceived as satisfactory by both patients and caregivers. Conclusion: It is relevant to aim for a multidisciplinary and multilevel system of care that empowers telemedicine and integrates specific psychological support programs for COPD patients and their caregivers.


Subject(s)
COVID-19 , Pulmonary Disease, Chronic Obstructive , Telemedicine , Caregivers , Communicable Disease Control , Cross-Sectional Studies , Humans , Italy/epidemiology , Pandemics , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/epidemiology , Pulmonary Disease, Chronic Obstructive/therapy , Quality of Life , SARS-CoV-2
7.
Neurol Sci ; 42(12): 5277-5288, 2021 Dec.
Article in English | MEDLINE | ID: mdl-33856582

ABSTRACT

BACKGROUND: Although migraine is widespread and disabling, stigmatisation and poor awareness of the condition still represent barriers to effective care; furthermore, research on migraine individual and social impact must be enhanced to unveil neglected issues, such as caregiving burden. The project investigated the migraine illness experience through Narrative Medicine (NM) to understand daily life, needs and personal resources of migraneurs, their caregivers and clinicians, and to provide insights for clinical practice. METHODS: The project involved 13 Italian headache centres and targeted migraneurs, their caregivers and migraine specialists at these centres. Written narratives, composed by a sociodemographic survey and illness plot or parallel chart, were collected through the project's webpage. Illness plots and parallel charts employed open words to encourage participants' expression. Narratives were analysed through Nvivo software, interpretive coding and NM classifications. RESULTS: One hundred and seven narratives were collected from patients and 26 from caregivers, as well as 45 parallel charts from clinicians. The analysis revealed migraine perception in social, domestic and work life within the care pathway evolution and a bond between chaos narratives and day loss due to migraine; furthermore, narratives suggested the extent of the caregiving burden and a risk of underestimation of migraine burden in patients' and caregivers' life. CONCLUSION: The project represents the first investigation on migraine illness experience through NM simultaneously considering migraneurs', caregivers' and clinicians' perspectives. Comparing narratives and parallel charts allowed to obtain suggestions for clinical practice, while NM emerged as able to foster the pursuing of migraine knowledge and awareness.


Subject(s)
Migraine Disorders , Narrative Medicine , Caregivers , Humans , Migraine Disorders/therapy , Quality of Life , Unmanned Aerial Devices
8.
Diabetes Res Clin Pract ; 174: 108732, 2021 Apr.
Article in English | MEDLINE | ID: mdl-33676996

ABSTRACT

Acute bacterial skin and skin structures infections (ABSSSIs) are associated with high morbidity, costs and mortality in patients with diabetes mellitus. Their appropriate management should include several figures and a well-organized approach. This review aims to highlight the interplay between diabetes and ABSSSIs and bring out the unmet clinical needs in this area. Pathogenetic mechanisms underlying the increased risk of ABSSSIs in diabetes mellitus are multifactorial: high glucose levels play a crucial pathogenetic role in the tissue damage and delayed clinical cure. Moreover, the presence of diabetes complications (neuropathy, vasculopathy) further complicates the management of ABSSSIs in patients with diabetes. Multidrug resistance organisms should be considered in this population based on patient risk factors and local epidemiology and etiological diagnosis should be obtained whenever possible. Moreover, drug-drug interactions and drug-related adverse events (such as nephrotoxicity) should be considered in the choice of antibiotic therapy. Reducing unnecessary hospitalizations and prolonged length of hospital stay is of primary importance now, more than ever. To achieve these objectives, a better knowledge of the interplay between acute and chronic hyperglycemia, multidrug resistant etiology, and short and long-term outcome is needed. Of importance, a multidisciplinary approach is crucial to achieve full recovery of these patients.


Subject(s)
Anti-Bacterial Agents/therapeutic use , Diabetes Complications/etiology , Skin Diseases, Bacterial/etiology , Acute Disease , Humans , Skin Diseases, Bacterial/physiopathology
9.
J Palliat Med ; 24(6): 887-893, 2021 06.
Article in English | MEDLINE | ID: mdl-33270529

ABSTRACT

Background: There is paucity of data on the potential value of early palliative home care for patients with hematologic malignancies. Objective: To compare costs, use of resources, and clinical outcomes between an early palliative home care program and standard hospital care for active-advanced or terminal phase patients. Patients and Methods: In this real-life, nonrandomized comparative study, the allocation of advanced/terminal phase patients to either home or hospital was based on pragmatic considerations. Analysis focused on resources use, events requiring blood unit transfusions or parenteral therapy, patient-reported symptom burden, mean weekly cost of care (MWC), cost-minimization difference, and incremental cost-effectiveness ratio (ICER). Results: Of 119 patients, 59 patients cared at home were more debilitated and had a shorter survival than the 60 in hospital group (p = 0.001). Nevertheless, symptom burden was similar in both groups. At home the mean weekly number of transfusions (1.45) was lower than that at hospital (2.77). Higher rate of infections occurred at hospital (54%) versus home (21%; <0.001). MWC for hospitalization was significantly higher in a 3:1 ratio versus home care. Compared with hospital, domiciliary assistance produced a weekly saving of € 2314.9 for the health provider, with a charge of € 85.9 for the family, and was cost-effective by an ICER of € -7013.9 of prevented days of care for avoided infections. Conclusions: Current findings suggest that costs of early palliative home care for patients with hematologic malignancies are lower than standard hospital care costs. Domiciliary assistance may also be cost-effective by reducing the number of days to treat infections.


Subject(s)
Hematologic Neoplasms , Home Care Services , Cost-Benefit Analysis , Hospitals , Humans , Palliative Care
10.
BMC Cardiovasc Disord ; 20(1): 522, 2020 12 12.
Article in English | MEDLINE | ID: mdl-33308152

ABSTRACT

BACKGROUND: The The Roadmap Using Story Telling project used a narrative medicine (NM) framework to assess the perspectives of people with heart failure (HF), their informal caregivers and HF specialists of the impact of HF on the daily life of patients and their carers. METHODS: Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. RESULTS: 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients' and their caregivers' daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. CONCLUSIONS: This NM project illustrates the complex issues of living with HF and gave insights to integrate three different perspectives into the HF pathway of care.


Subject(s)
Attitude of Health Personnel , Cardiologists/psychology , Caregivers/psychology , Cost of Illness , Emotions , Heart Failure/psychology , Narrative Medicine , Patients/psychology , Social Behavior , Activities of Daily Living , Aged , Cross-Sectional Studies , Female , Health Knowledge, Attitudes, Practice , Heart Failure/diagnosis , Heart Failure/physiopathology , Heart Failure/therapy , Humans , Italy , Male , Middle Aged , Physician-Patient Relations , Quality of Life
11.
BMJ Open ; 10(8): e036502, 2020 08 06.
Article in English | MEDLINE | ID: mdl-32764084

ABSTRACT

OBJECTIVES: Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice. DESIGN AND SETTING: The project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project's website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project's steering committee. PARTICIPANTS: Twenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian. RESULTS: The analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants' future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present. CONCLUSION: The project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.


Subject(s)
Narrative Medicine , Prader-Willi Syndrome , Adolescent , Adult , Child , Humans , Italy , Parents , Quality of Life
12.
Curr Opin Infect Dis ; 33(2): 155-165, 2020 04.
Article in English | MEDLINE | ID: mdl-32068645

ABSTRACT

PURPOSE OF REVIEW: Previous studies suggest an association between depression and increased risk of various type of infections, including acute bacterial skin and skin structure infections (ABSSSI). Here, we review the latest advancement in our understanding of immunity in patients with depression and its relevance to disease management and diagnosis, with a special focus on patients suffering from ABSSSI. RECENT FINDINGS: Recent studies have highlighted the role of hypothalamic-pituitary-adrenal axis, neuro-endocrine stress signaling pathways and behavioral attitudes (substance abuse and homelessness) in the pathogenesis of infections in depressed patients. Furthermore, acute bacterial infections, in turn, have emerged as a possible risk for depression development because of different mechanisms including antibiotic-driven changes in the microbiota. SUMMARY: Recent evidences have emphasized the threat that comanagement of depression and infection pose to infectious disease physician and psychiatrist. Depressed patients with ABSSSI must be closely monitored for drug side-effects, drug-drug interactions, toxicity, and adequate compliance. New management strategies including new long-acting antibiotics (e.g., dalbavancin) are welcome.


Subject(s)
Depression/complications , Skin Diseases, Bacterial/complications , Soft Tissue Infections/complications , Humans , Hypothalamo-Hypophyseal System , Pituitary-Adrenal System
13.
Multidiscip Respir Med ; 14: 26, 2019.
Article in English | MEDLINE | ID: mdl-31497295

ABSTRACT

BACKGROUND: In this project the authors use a narrative medicine (NM) approach to assess the promotion of trust in the relationship between physicians and their asthma patients. METHODS: Following a NM educational course for physicians, a research was carried out in which at least 5 written narratives (parallel charts) for each participating physician were collected and qualitatively analysed according to Bury's classification and the Grounded Theory. RESULTS: The results of this study were of speculative and clinical interest. In particular, 66 participants wrote 314 narratives (246 on adult and 68 on paediatric patients). As a result of applying the NM approach, when the relationships remained problematic, many physicians wrote with a moral style about their adult (67%), and paediatric patients (33%) - especially in cases of asthmatic children's or adolescents' overprotective or absent families (40%) -. On the contrary, physicians who were able to listen to their patients with empathy (35%) made more shared decisions with patients, even with those they initially had a bad relationship. The used words of welcome, interest and acceptance were promoting patients' trust that lead to restoring their activities in 45% of cases, according to physicians self-reporting. CONCLUSIONS: These approaches of NM are useful in daily clinical practice, with the goal of improving the quality of life (QOL) of patients with severe asthma, even in cases in which the doctor-patient relationship isn't initially good.

14.
Ital J Pediatr ; 45(1): 31, 2019 Mar 04.
Article in English | MEDLINE | ID: mdl-30832703

ABSTRACT

BACKGROUND: Asthma is a chronic inflammatory disease that is very common among youth worldwide. The burden of this illness is very high not only considering financial costs but also on emotional and social functioning. Guidelines and many researches recommend to develop a good communication between physicians and children/caregiver and their parents. Nevertheless, a previous Italian project showed some criticalities in paediatric severe asthma management. The consensus gathered together experts in paediatric asthma management, experts in narrative medicine and patient associations with the aim of identify simple recommendation to improve communication strategies. METHODS: Participants to the consensus received the results of the project and a selection of narratives two weeks before the meeting. The meeting was structured in plenary session and in three working groups discussing respectively about communication strategies with children, adolescents and parents. The task of each working group was to identify the most effective (DO) and least effective practices (DON' T) for 5 phases of the visit: welcome, comprehension of the context, emotions management, duration and end of the visit and endurance of the relationship. RESULTS: Participants agreed that good relationships translate into positive outcomes and reached consensus on communication strategies to implement in the different phase of relationships. CONCLUSIONS: The future challenges identified by the participants are the dissemination of this Consensus document and the implementation of effective communication strategies to improve the management of pediatric asthma.


Subject(s)
Asthma/therapy , Attitude of Health Personnel , Consensus , Physician-Patient Relations , Quality Improvement , Adolescent , Asthma/diagnosis , Child , Child, Preschool , Communication , Female , Humans , Male , Parent-Child Relations , Pediatrics/education , Severity of Illness Index
15.
Int J Chron Obstruct Pulmon Dis ; 13: 3095-3105, 2018.
Article in English | MEDLINE | ID: mdl-30323580

ABSTRACT

PURPOSE: The primary aim of this research was to raise awareness for COPD through real narratives of patients, caregivers, and pulmonologists. The second objective includes providing clinicians new means of caring for and treating patients with COPD. METHODS: Using narrative medicine, testimonies from patients, their caregivers, and clinicians were collected through an online questionnaire enriched by a narrative plot. Narrations were analyzed throughout descriptive statistics and an elaboration of recurring words and expressions. RESULTS: Throughout the project, 350 narratives were collected from 235 patients, 55 caregivers, and 60 physicians. Though a generally neutral reaction had been observed upon diagnosis, COPD had been found to have a high impact on the patients' and caregivers' lives. Metaphors utilized by patients and caregivers were suggestive of fear and panic unlike those utilized by clinicians who usually had a more technical approach. Smoking was a significant concern for not only patients and caregivers but also clinicians. CONCLUSION: Physicians are therefore challenged to find new ways of communicating COPD to raise awareness on this pathology and encourage corrective habits. An important social objective should be the implementation of a health system that is able to optimize patients' and caregivers' lives.


Subject(s)
Attitude of Health Personnel , Attitude to Health , Caregivers , Narration , Patient Participation , Pulmonary Disease, Chronic Obstructive , Pulmonologists , Quality of Life , Smoking/adverse effects , Adult , Cost of Illness , Data Collection , Disease Progression , Female , Humans , Italy , Male , Middle Aged , Patient Participation/methods , Patient Participation/psychology , Pulmonary Disease, Chronic Obstructive/etiology , Pulmonary Disease, Chronic Obstructive/physiopathology , Pulmonary Disease, Chronic Obstructive/psychology , Pulmonary Disease, Chronic Obstructive/therapy , Qualitative Research , Risk Factors
16.
ERJ Open Res ; 4(2)2018 Apr.
Article in English | MEDLINE | ID: mdl-29740592

ABSTRACT

Chronic obstructive pulmonary disease (COPD) is characterised by a progressive loss of pulmonary function. Often patients do not adhere to inhaled therapies and this leads clinicians to switch treatments in order to improve control of the symptoms. Narrative medicine is a useful approach that helps healthcare professionals to think over the doctor-patient relationship and how patients live with their disease. The aim of this training project was to teach pulmonologists the basics of narrative medicine: to carefully listen to patients and to practice reflective writing in their relationship with them. Training on narrative medicine and parallel charts was provided through a webinar and a weekly newsletter. Across 362 narratives, written by 74 Italian pulmonologists, 92% of patients had activity limitations at their first visit. The main factor influencing the effectiveness and adherence to therapy was a positive doctor-patient relationship; indeed, if such relationship is difficult, only 21% of patients are able to resume all their activities. After learning the narrative approach, clinicians became aware of the need to spend more time listening to patients, to reflect through writing and to understand more deeply the motivations that lead people towards adherence to new therapies.

17.
Article in English | MEDLINE | ID: mdl-29391786

ABSTRACT

Purpose: Poor adherence to therapy and the failure of current smoking cessation programs demonstrate that the current management of COPD can be improved, and it is necessary to educate physicians about new approaches for taking care of patients. Parallel chart is a narrative medicine tool that improves the doctor-patient relationship by asking physicians to write about their patients' lives, thereby encouraging reflective thoughts on care. Patients and methods: Between October 2015 and March 2016, 50 Italian pulmonologists were involved in the collection of parallel charts of anonymous patients with COPD. The narratives were analyzed according to the Grounded Theory methodology. Results: In the 243 parallel charts collected, the patients (mean age 69 years, 68% men) are described as still active and as a resource for their families (71%). The doctor-patient relationship started as difficult in 50% of cases, and younger age and smoking were the main risk factors. The conversations turned positive in 78% of narratives, displaying deeper mutual knowledge, trust for the clinicians' ability to establish effective therapy (92%), support efforts to quit smoking (63%), or restore patients' activities (78%). Conclusion: All the physicians concurred that the adoption of innovative parallel charts was useful for improving clinical care and worthy of official inclusion in protocols for the management of COPD.


Subject(s)
Attitude of Health Personnel , Health Knowledge, Attitudes, Practice , Narration , Narrative Medicine , Physicians/psychology , Pulmonary Disease, Chronic Obstructive/therapy , Quality of Life , Writing , Adult , Age Factors , Aged , Aged, 80 and over , Communication , Exercise , Female , Humans , Italy , Male , Middle Aged , Patient Compliance , Physician-Patient Relations , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/physiopathology , Respiratory System Agents/therapeutic use , Risk Reduction Behavior , Smoking Cessation , Treatment Outcome , Trust
18.
J Matern Fetal Neonatal Med ; 31(17): 2258-2264, 2018 Sep.
Article in English | MEDLINE | ID: mdl-28587492

ABSTRACT

The objective of the research was to understand the experience of families living a premature birth and to outline the current care plan in Italy. The survey was addressed to 150 parents of children born under the 34th week of pregnancy. Topics of the investigation were the implications on their family, social and working contexts, determined through a questionnaire enriched by a collection of narratives. Written testimonies were clustered through a Narrative Medicine method and matched with quantitative information. The main respondents were mothers of severe and moderate preterm children. Except for the Kangaroo Care, services were not uniformed amongst the centers and few home care supports resulted available for families. Sixty-seven percent of the mothers could not obtain a prolonged maternity leave and described the impacts on their working activities. Narratives revealed a low level of prevention, information and awareness on the risks of prematurity amongst families, few local networks among Neonatal Intensive Care Unit (NICU) teams, gynecologists and pediatricians, and the shortage of support for parents at work; these actions were collected in a Position Paper. Findings showed the integration between families' coping strategies and the offered care services for preterm births. Narrative tools could represent the bridge between families and health care teams.


Subject(s)
Adaptation, Psychological , Narration , Parent-Child Relations , Parents/psychology , Premature Birth/psychology , Adult , Female , Home Care Services/organization & administration , Home Care Services/standards , Humans , Infant Care/organization & administration , Infant Care/psychology , Infant, Newborn , Infant, Premature/psychology , Intensive Care Units, Neonatal , Italy/epidemiology , Male , Pregnancy , Premature Birth/epidemiology , Surveys and Questionnaires
19.
J Med Imaging Radiat Oncol ; 61(6): 777-790, 2017 Dec.
Article in English | MEDLINE | ID: mdl-28517240

ABSTRACT

Uterine malignancies account for the majority of gynaecologic cancers. Different treatment options are available depending on histology, disease grade and stage. Hysterectomy is the most frequent surgical procedure. Chemotherapy and radiation therapy (CRT) represents the preferred therapeutic choice for locally advanced uterine and cervical malignancies. Imaging of the female pelvis following these treatments is particularly challenging due to alteration of the normal anatomy. Radiologists should be familiar with both the expected post-treatment imaging findings and the imaging features of possible complications to make the correct interpretation and avoid possible pitfalls. The purpose of this review is to show the expected computed tomography (CT) and Magnetic Resonance Imaging (MRI) appearances of the female pelvis following surgery and CRT for uterine and cervical cancer, to illustrate the imaging findings of early and delayed most common complications after surgery and CRT, describing the suitable imaging modalities and protocols for evaluation of patients treated for gynaecologic malignancies.


Subject(s)
Drug-Related Side Effects and Adverse Reactions/diagnostic imaging , Postoperative Complications/diagnostic imaging , Uterine Neoplasms/diagnostic imaging , Uterine Neoplasms/therapy , Aftercare , Female , Humans , Radiotherapy/adverse effects
20.
Diagn Interv Radiol ; 23(3): 180-186, 2017.
Article in English | MEDLINE | ID: mdl-28360021

ABSTRACT

PURPOSE: We aimed to verify whether combination of specific signs improves magnetic resonance imaging (MRI) accuracy in morbidly adherent placenta (MAP). METHODS: MRI findings for MAP were retrospectively evaluated in 27 women. Histopathology was the reference standard, showing MAP in eight of 27 cases. Specificity, sensitivity, positive predictive value, and negative predictive value were calculated for all MRI signs. Two skilled radiologists analyzed MRI findings, resolving discrepancies by consensus, using three alternative diagnostic criteria during three consecutive sections. First criterion: at least one of reported MRI signs indicates MAP and the absence of any sign is normal; second criterion: at least one statistically significant sign indicates MAP and no sign or nonsignificant sign is normal; third criterion: at least two statistically significant signs indicate MAP and no sign, nonsignificant sign, or only one significant sign is normal. RESULTS: Using the first criterion yielded an unacceptable rate of false positive results (78.9%). Using the second criterion there were less false positive results (31.5%), and diagnostic accuracy of the second criterion was significantly higher than the first; the third criterion correctly classified 100% of cases. CONCLUSION: Only specific MRI signs can correctly predict MAP at histopathology, particularly when multiple (at least two) specific signs are observed together.


Subject(s)
Magnetic Resonance Imaging/methods , Placenta Accreta/diagnostic imaging , Placenta/diagnostic imaging , Adult , Cesarean Section/methods , Female , Gestational Age , Humans , Hysterectomy/methods , Middle Aged , Placenta/pathology , Placenta Accreta/pathology , Placenta Accreta/surgery , Predictive Value of Tests , Pregnancy , Retrospective Studies
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