Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care.

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.

Multicentre narrative research on major depression to integrate the experiences of patients, their caregivers and healthcare providers in Italy.

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.

Digits and narratives of the experience of Italian families facing premature births.

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.

Stories of experiences of care for growth hormone deficiency: the CRESCERE project.

AIMS: Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy. METHODS: Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions. RESULTS: Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues. CONCLUSION: Narratives found that communication issues could decrease adherence and influence the physicians' clinical practice.