This study aims to explore how patients with metastatic gastrointestinal stromal tumour (GIST) experience the adverse effects of treatment, as expressed by the individuals themselves. A qualitative, phenomenological and hermeneutic design was applied. Twenty patients with metastatic GIST participated in the study. In-depth and semi-structured interviews were conducted and then analysed by means of an inductive thematic analysis. The majority of participants reported experiencing a changed life after being diagnosed with metastatic GIST and commencing systemic medical treatment. More than half of them described partially debilitating self-reported side effects and complaints that had a detrimental impact on their lives. The life-prolonging tyrosine kinase inhibitor treatment prompted the participants to adapt to ‘a new normal’. Several participants also emphasised having an ambivalent relationship with the pill, although most looked upon it as ‘a friend’ because it kept them alive. Paradoxically, while the participants struggled with the side effects of treatment as well as the consequences of living with a chronic cancer, half of them considered themselves to be healthy and, thus, to not actually be cancer patients. We observed a gap between the biomedical perspective on disease that health professionals typically adopt and the individual experiences of patients living with metastatic GIST. For those patients who are living in limbo between having metastatic cancer and offered an effective treatment, a holistic view of health on the part of their healthcare providers seems crucial. A vital goal should hence be to improve communication between healthcare professionals and GIST patients so as to secure an individualised follow-up with guidance on coping with, and adapting to, their new normal. Trial registration The study was approved by the data protection officer of the Oslo University Hospital (Approval Number 2016/15358)

There is a growing interest in the application of creative writing in the treatment of mental illness. Nonpharmacological approaches have shown that access to poetic, creative language can allow for the verbalisation of illness experiences, as well as for self-expressions that can include other facets of the subject outside of the disease. In particular, creative writing in a safe group context has proven to be of particular importance. In this article, we present a pilot on a creative writing group for young adults in treatment for psychosis. We set the texts and experiences from the writing group in dialogue with Paul Ricoeur’s and Julia Kristeva’s philosophies onpoetic languageas meaning making and part of subject formation. The focus is on language as materiality and potentiality and on the patient’s inherent linguistic resources as founded in a group dynamic. As a whole, the project seeks to give an increased theoretical and empirical understanding of the potentiality of language and creativity for healing experiences, participation and meaning-making processes among vulnerable people. Furthermore, a practice founded in poetic language might critically address both the general and biomedical understanding of the subject and disease.

17.09.2018: Språkspalten - Betegnelsen evidence-based medicine ble lansert i 1991.

The empirical literature on the lived experience of electroconvulsive therapy (ECT) is limited, divergent, and largely focused on the experiences of procedures, (adverse) effects, information provision, or decision-making. This study aimed to investigate aspects related to the lived experience and meaning-making of people who have had ECT. In-depth interviews with 21 women (21-65 years old) were analyzed using interpretative phenomenological analysis (IPA). A subgroup of nine participants described more negative experiences with ECT. A common factor for these participants was the experience of trauma that remained under-treated. The superordinate themes identified were a lack of trauma-based and recovery-oriented treatment. The rest of the sample (12) expressed more positive experiences with ECT. This study suggests that exploring more broadly the impacts of ECT at the long term offers insights that can help design more person-centered services aligned to the needs of the treatment recipients. Educational modules for mental health care staff should include, besides knowledge on the methods' effectiveness, additional evidence about treatment recipients' subjective concerns and the relevance of trauma and recovery-oriented care models.