In this issue of JPGN, Emedo and colleagues present a study on the quality of life in children with severe intestinal failure requiring overnight intravenous nutrition (1). The children and their caregivers were individually questioned about their lifestyle and health, and the transcripts of their narrative were analysed using interpretive phenomenological analysis. The article provides interesting information about the effects of intravenous nutrition on daily activities and social life, as well as about resilience and acceptance of these children to cope well with illness-related demands. Illness narrative is a technique with which doctors are often unfamiliar, and hence uncomfortable; however, no books or articles on intestinal failure provide such detailed information on patients' experience of illness. Actually, the embarrassment associated with incontinence, the restriction of evening social activities such as sleepovers, the problems associated with extended periods of time spent away from school, the experience of bullying and of loneliness, and the fear of disease complications, frequent hospitalisations, and intrusive medical procedures are not described in medical books and evidence-based literature. Nonetheless, paediatricians and paediatric nurses need such information to care for these children and the only way to get it is through patients' narrative. Listening to patients has represented for a long time the only way to obtain information on illness; however, beginning in the last century, whereas effective drugs, diagnostic procedures, and surgery were becoming gradually available, the tradition of narrative has been lost, and most clinicians have at present confidence in only in quantitative and evidence-based information for establishing a diagnosis and prescribing a treatment. Nonetheless, that situation is changing and narrative is becoming a frequent topic in the medical literature (2), because it has been suggested that understanding the context of illness can provide a framework for approaching a patient's problems holistically, as well as for revealing diagnostic and therapeutic options (3). Narratives put the doctor in contact with the inner hurt, despair, hope, grief, and moral pain that frequently accompany people's illness (3), encourage empathy, and promote understanding between the clinician and patient. Moreover, reflecting on illness can be therapeutic or palliative for some patients, and it can help doctors to target specific health, social, and educational issues. Understanding the meaning of human disease is a central concern of philosophers, but it is a concept often unfamiliar to doctors, for whom disease does mean aetiology, impairment of anatomical structures and functions, diagnostic procedures, mechanism of action of drugs, and scientific evaluation of the outcome of medical and surgical treatment. For patients, the meaning of illness depends on the value they give to life and death, on their fear of pain and of loneliness, and on their hope of healing. Narratives may thus bridge the gap between the doctor's understanding of disease and the patient's feeling of illness; such a bridge can create reciprocal understanding and alliance, therapeutic compliance, and ability to cope with illness-related demands (4). Moreover, narratives can help to set a patient-centred agenda and to generate new research hypotheses. In fact, a dangerous tendency has been reported among clinicians to see the expected and unconsciously dismiss the anomalous: “We have to beware of this suppressive faculty which, by producing selective deafness, selective blindness, and other sense rejections, can so easily suppress the significant and the relevant (3,5).” How can we collect the narratives of our patients? We first need to understand the new information and the advantages that narratives can provide, compared with the medical history we usually collect. If we recognise these advantages, the core clinical skills of listening, questioning, delineating, explaining, interpreting, and being empathic will no more be considered a waste of time but an essential part of our work. This is not easy for medical and nursing students because medical and nursing education rarely provide such skills, whereas much emphasis in training is on the ability to express patients' problems in structured and standardised formats. Listening and communication skills are at present not part of most health professions programs and empathy is not a study discipline like biochemistry or obstetrics. The lost tradition of narrative should then be revived in the teaching and practice of medicine. The experience of children and their families, in the form of illness narrative, can provide relevant insights for paediatricians, engaging them in an ethical, an empathetic, and a self-reflective practice.
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Mar 12, 2023
Kipa Jundapri + 4
Open Access
