Every Second Counts

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive disease that affects patients with a loss of speech and mobility. The aim of this study was to describe patients' experiences of living with ALS in the end-of-life situations. A manifest content analysis was chosen for analysis narratives from four biographies by women who had ALS. The categories Suffering, Meaningfulness, and Experiences of a Limited life were identified as describing patients' understanding of living with ALS. Nurses need to be trained in communication skills to maintain human dignity for patients who lost their speech regarding an intellect in shape.There is a need for information among family members about severe diseases, such as ALS, to improve high quality of care and well-being for all involved. Home health care has to invite and facilitate patients' and relatives' participation regarding the end-of-care processes to improve a sense of coherence to handle everyday life situation in the future.Keywords amyotrophic lateral sclerosis (ALS), communication skills, end-of-life care, qualitative content analysis, sense of coherence (SOC)

The role of spirituality in people with amyotrophic lateral sclerosis and their caregivers: Scoping review

“…Table 1 presents the summary information of the final studies analyzed, including authors, year, country, study aim, type of study, and population and characteristics. Most of the identified studies were qualitative (n = 14) (Akiyama et al 2006;Cipolletta and Amicucci 2015;Dos Santos Costa et al 2021;Fanos et al 2008;Foley et al 2007;Hamama-Raz et al 2021;Locock et al 2009;Madsen et al 2018;O'Brien and Preston 2015;Ozanne et al 2013Ozanne et al , 2015Rosengren et al 2015;Warrier et al 2020;Yuan et al 2021) and used semi-structured interviews for data collection except 2 studies: one used biographies selected through a search by keyword (Rosengren et al 2015) and the other used internet and print-published narratives written by people with ALS/MND (O'Brien and Preston 2015). Three were identified as quantitative (Bentley et al 2014;Fegg et al 2010;Murphy et al 2009): 1 was a cross-sectional study that utilized a single treatment group (Bentley et al 2014) and the other 2 were cross-sectional studies with the application of scales (Fegg et al 2010;Murphy et al 2009).…”

“…From 10 studies that included ALS patients, 4 did not indicate the sex of the patients (Foley et al 2007;Hamama-Raz et al 2021;Locock et al 2009;O'Brien and Preston 2015) (Fegg et al 2010;Locock et al 2009;Rosengren et al 2015).…”

“…While trying to make sense of life, some patients search for a positive aspect to emerge as a tranquil composure and hope, acquiring strength from turning misfortune into an advantage (Bentley et al 2014;Hamama-Raz et al 2021). They argue that the feeling gets stronger to utilize all moments regarding a limited lifetime where every second counts (Rosengren et al 2015).…”

The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

“…(2006, Australia) (Hudson, et al, 2006) To describe the experience of Parkinson's disease and consider the relevance of palliative care for this population (Poppe, et al, 2013) To explore the acceptability of discussing advanced care planning with people with memory problems and mild dementia shortly after diagnosis Rosengren. Every second counts: Women's experience of living with amyotrophic lateral sclerosis in the end-of-life situations (2015, Sweden) (Rosengren, et al, 2015) To describe patients' experiences of living with ALS in the end-of-life situations (Whitehead, et al, 2012) To explore the experiences of people with motor neurone disease, current and bereaved carers in the final stages of the disease and bereavement period (Wollin, Yates, & Kristjanson, 2006) To identify the supportive needs of individuals with multiple sclerosis and their families…”

Investigating The Values of Guidance and Counseling in Eleganaboi

“…Moreover, the reason for extending the involvement of all community members without defining their family background to dignify each people. Every human has the right and dignity to be substantiated (Rosengren et al, 2015). The inclusiveness of all community members and guests affirm the openness of the community (Kass, 2015).…”