Understanding mealtime changes for adults with cerebral palsy and the implications for support services

Balandin, Susan; Hemsley, Bronwyn; Hanley, Leah; Sheppard, Jeremy M.

doi:10.1080/13668250903074489

Cited by 50 publications

(55 citation statements)

References 22 publications

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“…Difficulties and discomfort during a meal situation have a negative impact on an individual's self-esteem and a negative consequence may be that the meal situation itself becomes associated with discomfort (see e.g. Lance, 2007;Balandin et al, 2009). This lead to unwillingness to use the eating aid, as it may create undignified meal situations.…”

Section: Reflections On the Resultsmentioning

confidence: 99%

“…Meal situations, which have a high cultural value in human life, are not always enjoyable situations for everyone (Mintz & Du Bois, 2002). People may experience difficulties and discomfort during meal situations that affect their self-esteem and social relationships (Balandin et al, 2009). People who need the help of others during meal situations can experience low self-esteem and feelings of stigmatization, which can lead to isolation (Martinsen et al, 2008).…”

Section: The Meal Situation and An Eating Aidmentioning

confidence: 99%

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Experiences of using Bestic, an eating aid for people with intellectual disabilities

Dag

Svanelöv

Gustafsson

2015

J Intellect Disabil

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This article reports on the results of a pilot study exploring if and how the meal situations of persons with intellectual disabilities (PWIDs) in need of help and support during meal situations was affected by an eating aid. This article also analyzes how PWIDs and their assistants perceived their experiences of using an eating aid during meal situations. Data for the study were collected in interviews with PWIDs and their assistants. The results are presented in five themes: Independence in the meal situation, Motivation to use the eating aid, Functions of the eating aid, Social aspects of using the eating aid and Design corresponding to intellectual disability. The eating aid's function, user-friendliness and the assistant's attitudes appear to be crucial for using the eating aid. Another important aspect is the introductory and training phase which must be fundamentally adapted to suit PWIDs learning and understanding abilities. When these aspects are controlled, the eating aid can be a tool for increased independence during meal situations for PWIDs who are unable to move their arms or hands.

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Section: Reflections On the Resultsmentioning

confidence: 99%

Section: The Meal Situation and An Eating Aidmentioning

confidence: 99%

Experiences of using Bestic, an eating aid for people with intellectual disabilities

Dag

Svanelöv

Gustafsson

2015

J Intellect Disabil

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“…Although it suggested that dysphagia is slowly progressive 5 , the variability of symptoms emergence was supreme when it was prepared the Speech, Language and Hearing therapeutic process to dysphagia in MJD patients. Moreover, as it was found in studies about other chronic or chronic-degenerative diseases, the QOL evaluation in dysphagia and the actions planning impacted on the functionality committed by the disease, causing promotion of general well-being of people 20,25,28,29 .…”

Section: Discussionmentioning

confidence: 99%

Qualidade de vida em pacientes com doença de Machado-Joseph sob acompanhamento fonoaudiológico para disfagia

2016

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The Machado-Joseph disease is a degenerative disease, currently considered the most frequent spinocerebellar ataxia. The degenerative process of the disease affects several regions and functions of the central and/or peripheral nervous system. The dysphagia is one of the symptoms of Machado-Joseph disease, being responsible for the clinical complications and for the aspiration pneumonia, its main cause of death. The goal of this paper is to verify the impact of the speech-language therapy in the quality of life of the Machado-Joseph disease patients. Four patients diagnosed with Machado-Joseph disease attended to the research, three female and one male, with age average in 46,5 years-old (± 18), and complaining about dysphagia. In the first session, all patients answered the protocol of quality of life in dysphagia assessment of Quality of Life in Dysphagia, SWAL -QOL were assessed for structural and functional aspects of swallowing and classified according to Functional Intake Scale for Oral (FOIS). After six speech therapy sessions conducted a new clinical evaluation of swallowing, again classified according to FOIS and answered the SWAL -QOL. Conclusions: After speech therapy, all patients showed better concept in the field fear of eating, food as a burden and fatigue, which can be inferred that there was an improvement in satisfaction with food processes and hence the quality of life accompanied subjects.

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“…Such dysphagia-related safety incidents are expensive to governments and disability organisations (Access Economics, 2008). Additionally, they are distressing to the person with dysphagia (Balandin, Hemsley, Hanley, & Sheppard, 2009) and those who provide care and support (Ball et al, 2012).…”

Section: Dysphagia-related Safety Incidents and Patient Safety Framewmentioning

confidence: 99%

A call for dysphagia-related safety incident research in people with developmental disabilities

Hemsley

Balandin

Sheppard

et al. 2015

Journal of Intellectual and Developmental Disability

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Understanding mealtime changes for adults with cerebral palsy and the implications for support services

Cited by 50 publications

References 22 publications

Experiences of using Bestic, an eating aid for people with intellectual disabilities

Experiences of using Bestic, an eating aid for people with intellectual disabilities

Qualidade de vida em pacientes com doença de Machado-Joseph sob acompanhamento fonoaudiológico para disfagia

A call for dysphagia-related safety incident research in people with developmental disabilities

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