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Objective: The study aimed to explore the meaning for adolescents of living with a parent with amyotrophic lateral sclerosis (ALS)., Methods: The design is qualitative. Interviews were conducted between December 2020 and April 2022 with 11 adolescents (8-25 y), living in households with a parent with ALS in Sweden. The analysis was phenomenologically hermeneutical., Results: The adolescents were in a difficult and exposed situation, especially if the parent had a severe disability and assistant care providers were in the home. Witnessing the gradual loss of the parent in an indefinite battle against time, while still needing them, elicited grief-filled and hard-to-manage emotions. Everyday life was turned upside down, resulting in greater responsibility for the adolescents, not only in helping with household chores and assisting the ill parent, but also in emotionally protecting both parents. It forced the adolescents to mature faster and put their own life on hold, triggering experiences of being limited. This, together with changing family roles yet being more attached to home, reinforced the imbalance in the adolescents' lives. The interpreted whole of the adolescents' narratives revealed that living with a parent with ALS meant a challenging and grieving transition during an already transition-filled adolescence, which left the adolescents struggling to keep a foothold on a life torn apart., Conclusion: The unbalanced life situation may hinder the adolescents' identity formation and emancipation, which are developmentally important for managing a healthy and independent adulthood. The results emphasize the importance of early targeted support to reach this vulnerable group in order to secure their health., Competing Interests: Declaration of competing interest The authors declare no conflicts of interests., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Previous studies have examined manageability and meaningfulness in amyotrophic lateral sclerosis (ALS), but there is a lack of studies examining the comprehensibility of ALS among patients and their spouses. Aim: This qualitative retrospective study aimed to illuminate patients’ and spouses’ experiences of comprehensibility in ALS from a long‐term perspective, when symptoms appeared before diagnosis, and when the diagnosis was given and in life after diagnosis. Methods: Individual semi‐structured interviews with 14 patients and 13 spouses were performed. The transcribed interviews were subjected to qualitative content analysis. Findings: Through the whole disease process, patients and spouses feared the unknown regardless of whether they comprehended the disease or not. They described that they before diagnosis felt uncertainty. It was problematic to comprehend what was wrong and what the deterioration implied. At the diagnosis, they described feelings of losing their foothold. Long‐term after diagnosis, they still lived in fear and looked for reasons why they were afflicted. Conclusions: Findings of similar experiences in comprehensibility between patients and spouses strengthen the importance of support and information to both parties. Since they hovered between comprehensibility and incomprehensibility during the whole disease process, it is important that their questions, fears and worries are met, from the first visit at hospital and through the whole process. Multiprofessional teams, such as ALS teams and palliative teams can from a holistic perspective increase the possibility of meeting their needs in their unique situation. [ABSTRACT FROM AUTHOR]

Aim: To illuminate experiences of living with life-threatening diseases as described in blogs and the experience of blogging about these matters. Methods: A secondary analysis of 21 blogs was performed. Results: It was difficult for bloggers to accept what they perceived to be the unacceptable aspects of having an life-threatening disease. They searched for hope and acceptance, and tried to manage their life. They felt strengthened by supportive encounters with health professionals, relatives, friends, and from their blogging. However, they also felt that they were set aside in relation to both health professionals and relatives. Conclusion: These patients appreciated being able to express their feelings and received support from their readers. Even if patient blogs can be used in health care, research and education, there is a lack of research studies that have examined the benefits of using blogging for any of these purposes. [ABSTRACT FROM AUTHOR]

Aim To explore patients' most distressing concerns during a hospital stay. Background The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting. Methods This study was part of a point prevalence survey ( PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension. Findings The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world. Conclusion Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour. [ABSTRACT FROM AUTHOR]

Aim and objectives To illuminate how people with amyotrophic lateral sclerosis (ALS) create meaning despite the disease. Background Coping strategies for living with ALS have already been investigated. However, there is a lack of studies on how people with the disease find meaning and what helps and hinders this. Design A qualitative descriptive study. Methods Fourteen individual interviews were performed in Spring 2007. The interviews were analysed by qualitative content analysis. Results Two themes emerged to illuminate the complex life situation of the interviewees: experiences of anxiety over life and death and finding meaning despite the illness. It became clear that the uncertain journey towards death was more frightened than death itself. Despite the incurable disease, which brought feelings of life and death anxiety, physical loss, unfairness, guilt, shame and existential loneliness, they also found meaning in life, which strengthened their will to live. Meaning was found through their family and friends, the act of giving and receiving help, the feeling of having a life of their own and accepting the present. The perspective of life was transferred to a deeper view where material things and quarrels were no longer in focus. Conclusions Despite the disease, the participants found meaning in life which strengthened their will to live. Relevance to clinical practice The balance between anxiety over life and death and finding meaning in life indicates the importance of support through the whole disease process. Both disease-specific problems and existential questions must be tackled. Nurses and other professionals need to be aware of the patients' existential qualms. There is a need to focus on what is important for the individual, and emphasis must be placed on where that person can find meaning. [ABSTRACT FROM AUTHOR]

Aim and objectives. This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. Background. The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. Design. A qualitative descriptive study. Method. This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. Results. The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. Conclusion. The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. Relevance to clinical practice. Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation. [ABSTRACT FROM AUTHOR]