How people with motor neurone disease talk about living with their illness: a narrative study

Aim. This paper is a report of a study which explores patients' experiences and how they talk about living and coping with motor neurone disease.Background. Living with motor neurone disease is challenging, frightening and disabling. It leads to progressive physical decline, normally with a prognosis of 3–5 years. Patients have to deal with many problems, including loss of mobility and the inability to communicate. There is little evidence about how people manage these problems or live with this illness.Method. Narrative case studies were used, the unit of analysis being a patient living in their own home or a care home. Thirteen adults were recruited through purposeful sampling. Longitudinal narrative interviews were conducted at three-monthly intervals over an 18-month period in 2005–06. Interviews were analysed focusing on the form and content of the patients' narratives.Findings. Four types of narrative, or storyline were identified. The sustaining storyline is about living life as well as possible through keeping active and engaged in life. In contrast, the enduring storyline concerns living in an insurmountable situation leaving the person feeling disempowered, unable to fight for life or against death. Survival is the essence of the preserving storyline, while the fracturing storyline concerns loss and fear of what is to come.Conclusion. Storylines help make sense of complex narratives by encouraging closer attention and active listening to the stories and serve as organizing threads to help patients, families and healthcare professionals better understand living with motor neurone disease

Processo grupal em enfermagem: possibilidades e limites Groupal process in nursing: possibilities and limities

Este trabalho apresenta a trajetória de estudos e de reflexões sobre a utilização de grupos na assistência de enfermagem. Através de uma perspectiva qualitativa buscamos identificar, na percepção dos entrevistados, aspectos que os motivam para essa atividade, suas fontes de aprendizagem e os pontos relevantes da sua experiência concreta com grupos. Verificamos que os enfermeiros reconhecem o valor terapêutico desse trabalho e providenciam condições físicas e estruturais adequadas. No entanto, um dos fatores limitantes no desenvolvimento dessa atividade é a dificuldade no manejo de situações grupais que revelam os meandros do sentimento humano, indicando que o enfermeiro coordenador de grupo, necessita além de recursos teóricos, exercitar seu autoconhecimento para prover um ambiente e relacionamento interpessoal capazes de otimizar o valor terapêutico dessa atividade.<br>This work shows studies and reflections about the utilisation of groups in nursing assistance. As an aim sought to identify, through nurses perspective, aspects about their motivations to work with groups, their surce of knowledge and relevant points of their experience with groups. The results demonstrates that nurses recognise the therapeutic value of groups in assistance and provide suitable conditions to its development. However, difficulties to handling groupal situations are limiting elements to develop this activity that reveal the human sentiment meander, indicating that nurse group co-ordinator needs, beyond theoretical establishment, to practice by their selfknowledge to provide an ambient and a interpersonal relationship able to obtain the real significance of this activity