Cuidados paliativos, esclerose lateral amiotrófica e deglutição: estudo de caso

Abstract

This study aims to discuss Speech-language pathology (SLP) therapy intervention in dysphagia with a focus on palliative care and quality of life. It is a case study conducted with four participants with amyotrophic lateral sclerosis undergoing SLP therapy outpatient follow-up. The Swallowing Quality of Life Questionnaire (SWAL-QOL) and a structured interview were applied to the participants, who also underwent Videofluoroscopic Swallowing Study (VFSS). Participants were classified according to the Functional Oral Intake Scale (FOIS), the Amyotrophic Lateral Sclerosis Severity Scale, translated and culturally adapted to Brazilian Portuguese (ALSSS), and the Dysphagia Outcome Severity Scale (DOSS). Four patients showed interest in maintaining oral food intake, even if minimal, in the event of tube feeding. Regarding severity of dysphagia, observed in the SVF, the participants presented DOSS classification ranging from functional deglutition to mild-to-moderate dysphagia. The impact on swallowing quality of life was between discrete and severe. Not all participants presented correlation between severity of dysphagia and SWAL-QOL level of impairment, with impact on the quality of life observed even in cases of mild dysphagia severity. Participants reported that they would feel uncomfortable in the event of exclusive tube feeding, and that the oral intake of food, even if minimal only for the pleasure of eating, would have a direct or indirect impact on their quality of life.

Experiences of food and mealtime from the perspective of patients with chronic life‐limiting disease: A mixed‐method systematic review

“…In three studies (Johnston Taylor, 2016;Keller et al, 2010;Souter, 2005), interviews were conducted in dyads with patients and informal caregivers, possibly influencing interview candour. Two mixed-methods studies did not report analysis proceedings (Luchesi & Silveira, 2018;Mahmoud et al, 2011), making assessment of trustworthiness challenging. In five quantitative studies (Amano et al, 2016;Hawkins, 2000;Mahmoud et al, 2011;Strasser et al, 2007), questionnaires were not validated, making inferences difficult.…”

“…Twenty-four studies were included in the review: 16 (67%) employed qualitative methods (Gwilliam & Bailey, 2001;Hopkinson, 2007;Johnston Taylor, 2016;Keller et al, 2010;McClement et al, 2003;McQuestion et al, 2011;Monturo & Strump, 2014;Odencrants et al, 2005;Orrevall et al, 2004Orrevall et al, , 2005Reid et al, 2009;Shragge et al, 2007;Souter, 2005;Van der Riet et al, 2006;Wallin et al, 2015). Five (21%) articles were based on quantitative research methods (Amano et al, 2016;Chai et al, 2014;Chan & Pang, 2007;Hawkins, 2000;Hopkinson, 2007), while three (13%) described their study design as mixed methods (Luchesi & Silveira, 2018;Mahmoud et al, 2011;Strasser et al, 2007). See Table 1 for an overview of included studies.…”

“…& Silveira, 2018; Orrevall et al, 2005). When having difficulties eating, holding food in the mouth for enjoyment could be important (Luchesi & Silveira, 2018).…”

“…Patients forced themselves to eat food they did not want, just to please others (Johnston Taylor, 2016;McQuestion et al, 2011;Reid et al, 2009), and patients ate more when eating with others Odencrants et al, 2005). Eating meant signalling a will to fight (Johnston Taylor, 2016), as food and eating were a way to maintain health and bodily functions (Amano et al, 2016;Luchesi & Silveira, 2018). Patients also talked about improving well-being by eating more food, since eating led to strength and energy to be physically active (Shragge et al, 2007;Wallin et al, 2015).…”

“…Food and meals were experienced as socially significant, even though the illness trajectory disrupted situations around food and mealtimes (Gwilliam & Bailey, 2001;Keller et al, 2010;Luchesi & Silveira, 2018;McQuestion et al, 2011;Monturo & Strump, 2014;Orrevall et al, 2005;Souter, 2005;Wallin et al, 2015). Preparing food and eating together was experienced as caring for each other (Chai et al, 2014;Johnston Taylor, 2016;Keller et al, 2010).…”