A esperança nas pessoas com esclerose lateral amiotrófica em cuidados paliativos: uma scoping review

Abstract

Introduction: Hope, which is indispensable for human life, can have therapeutic value in the face of adversity such as illness, even when a cure is not possible. People with Amyotrophic Lateral Sclerosis (ALS), whose course of illness brings with it considerable losses such as loss of speech, movement and breathing, are examples of the possibility of living with hope despite limitations. Research into hope in people with ALS can help to understand the essence of this concept in Palliative Care (PC) and to improve care for people with ALS. How is the evidence presented and what is known about hope in people with ALS in CP? Objective: To summarize the scientific evidence about hope in people with ALS in the context of PC. Materials and methods: Scoping Review, led by the Joanna Briggs Institute (JBI) methodology. There were included all types of studies with inclusion criteria defined according to the PCC mnemonics. Participants are people with ALS and the articles deal with the concept of hope in the context of PC and multidisciplinary centers dedicated to ALS. In the research process the sources CINAHL, MEDLINE, MedicLatina, Academic Search Complete, PsycARTICLES, Nursing Research Center, SciELO, OpenGrey, and Google Scholar were used. The titles and abstracts of the articles found were read. Those that met the inclusion criteria were read in full, and their data were recorded in a document adapted from the Study details, characteristics and results extraction tool provided by JBI. The research, analysis, and synthesis of the data was performed by two independent reviewers. Results: 7 studies were selected including opinion articles and mixed and quantitative methods articles, published between 1989 and 2018, mainly in the USA. The data were divided into 3 categories: the meaning of hope, factors influencing it, and interventions that promote hope. It was found that hope is a personal experience that is important for quality of life, that varies over time and the disease continuum and has multiple meanings, such as association with healing and self-transcendence. It can be influenced by several factors that promote or inhibit it. Some interventions that promote hope are building a therapeutic relationship, adjust the focus of hope, encouraging an optimistic attitude, helping to focus on the present, dealing with stress, celebrating humor, preparing for the future, promoting empowerment, sharing technical aids and education, promoting social support and family support. Conclusions: As a preliminary study, this review should motivate the definition of specific themes and the preparation of primary studies on hope in people with ALS. The lack of evaluation of the methodological quality of the studies and the heterogeneity between them made it difficult to present precise recommendations.