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

Journal of Intellectual and Developmental Disability

Volumn 34, Issue 3, 2009, Pages 197-206

  Balandin, Susan ^a,b,e   Hemsley, Bronwyn ^b,c   Hanley, Leah ^b   Sheppard, Justine Joan ^d  

^a MOLDE UNIVERSITY COLLEGE   (Norway)

^b UNIVERSITY OF SYDNEY   (Australia)

^c UNIVERSITY OF QUEENSLAND   (Australia)

^d Columbia University ^*  (United States)

^e Avdeling for Helse og Sosialfag   (Norway)

Author keywords

Adults; Cerebral palsy; Communication; Dysphagia; Lifelong disability; Mealtime management; Qualitative research

Indexed keywords

ADULT; AGED; AIRWAY OBSTRUCTION; ARTICLE; CEREBRAL PALSY; CLINICAL ARTICLE; COUGHING; DIET; DYSARTHRIA; EXPERIENCE; FEEDING BEHAVIOR; FEMALE; FUNCTIONAL STATUS; GASTROINTESTINAL DISEASE; HEALTH CARE PERSONNEL; HUMAN; INTERVIEW; MALE; MEDICAL DECISION MAKING; QUALITATIVE ANALYSIS; SOCIAL INTERACTION; STOMACH TUBE; SWALLOWING; TUBE FEEDING;

ACTIVITIES OF DAILY LIVING; ADULT; AGED; AGING; AIRWAY OBSTRUCTION; APPOINTMENTS AND SCHEDULES; CAREGIVERS; CEREBRAL PALSY; COMMUNICATION; COUGH; DECISION MAKING; DEGLUTITION; DEGLUTITION DISORDERS; EMOTIONS; FAMILY RELATIONS; FEMALE; FOOD SERVICES; HUMANS; INCIDENCE; INTERPERSONAL RELATIONS; INTERVIEWS AS TOPIC; LONGITUDINAL STUDIES; MALE; MIDDLE AGED;

EID: 69049112040     PISSN: 13668250     EISSN: 14699532     Source Type: Journal    
DOI: 10.1080/13668250903074489     Document Type: Article

References (33)

1. Balandin, S. (2007). The role of the case manager in support communication. In C. Bigby, C. Fyffe, & E. Ozanne (Eds.), Planning and support for people with intellectual disabilities: Issues for case managers and other professionals (pp. 233-247). London: Jessica Kingsley.
2. Balandin, S., Hemsley, B. J., & Hanley, L. (2008). Dysphagia disorders survey and SWAL-QOL: Mealtime assessment for adults with cerebral palsy. Journal of Intellectual Disability Research, 52(8/9), 783.
3. Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What's happening? Journal of Intellectual & Developmental Disability, 22, 109-124.
4. Balandin, S., & Morgan, J. (2001). Preparing for the future: Aging and alternative and augmentative communication. Augmentative and Alternative Communication, 17, 99-108. (Pubitemid 32584776)
5. Barczi, S. R., Sullivan, P. A., & Robbins, J. (2000). How should dysphagia care of older adults differ? Establishing optimal practice patterns. Seminars in Speech and Language, 21, 347-361.
6. Bowling, A., & Gabriel, Z. (2004). An integrational model of quality of life in older age. Results from the ESRC/MRC HSRC quality of life survey in Britain. Social Indicators Research, 69, 1-36.
7. Calis, E. A. C., Veugelers, R., Sheppard, J. J., Tibboel, D., Evenhius, H. M., & Penning, C. (2008). Dysphagia in children with severe generalized cerebral palsy and intellectual disability. Developmental Medicine and Child Neurology, 50, 625-630.
8. Chadwick, D. D., Jolliffe, J., & Goldbart, J. (2003). Adherence to eating and drinking guidelines for adults with intellectual disabilities and dysphagia. American Journal on Mental Retardation, 108, 202-211. (Pubitemid 36514492)
9. Cichero, J. A. Y. (2006). Swallowing from infancy to old age. In J. A. Y. Cichero & B. E. Murdoch (Eds.), Dysphagia: Foundation, theory and practice (pp. 26-46). Chichester, UK: Wiley.
10. Creswell, J. W. (2007). Qualitative inquiry & research design: Choosing among five approaches (2nd ed.). Thousand Oaks, CA: Sage.
11. deRenzo, E. G. (1997). Ethical considerations in dysphagia treatment and research: Secular and sacred. In B. C. Sonies (Ed.), Dysphagia: A continuum of care (pp. 91-106). Gaithersberg, MD: Aspen.
12. Ekberg, O., Hamdy, S., Woisard, V., Wuttge-Hannig, A., & Ortega, P. (2002). Social and psychological burden of dysphagia: Its impact on diagnosis and treatment. Dysphagia, 17, 139-146. (Pubitemid 36919842)
13. Gabriel, Z., & Bowling, A. (2004). Quality of life from the perspectives of older people. Ageing & Society, 24, 675-691. (Pubitemid 39306296)
14. Hemsley, B., & Balandin, S. (2003). Disability, dysphagia, and complex communication needs: Making room for communication in ethical decisions about dysphagia. Advances in Speech-Language Pathology, 5, 125-129.
15. Kaatzke-McDonald, M. (2003). Dysphagia, disability, and icebergs: A discussion. Advances in Speech-Language Pathology, 5, 131-135.
16. Lachapelle, Y., Wehmeyer, M. L., Haelewyck, M.-C., Courbois, Y., Keith, K. D., Schalock, R., et al. (2005). The relationship between quality of life and self-determination: An international study. Journal of Intellectual Disability Research, 49, 740-744. (Pubitemid 41403989)
17. McHorney, C. A., Robbins, J., Lomax, K., Rosenbek, J. C., Chignell, K., Kramer, A. E., et al. (2002). The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia, 17, 97-114.
18. Morgan, A., & Reilly, S. (2006). Clinical signs, aetiologies and characteristics of paediatric dysphagia. In A. Y. J. Cichero & B. E. Murdoch (Eds.), Dysphagia: Foundation, theory and practice (pp. 391-465). New York: Wiley.
19. Patel, V. L., Cytryn, K. N., Shortliffe, E. H., & Safran, C. (2000). The collaborative health care team: The role of individual and group expertise. Teaching and Learning in Medicine, 12, 117-132.
20. Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
21. Reilly, S., & Skuse, D. (1992). Characteristics and management of feeding problems of young children with cerebral palsy. Developmental Medicine & Child Neurology, 34, 379-388.
22. Samuels, R., & Chadwick, D. D. (2006). Predictors of asphyxiation risk in adults with intellectual disabilities and dysphagia. Journal of Intellectual Disability Research, 50, 362-370.
23. Senner, J. E., Logemann, J., Zecker, S., & Gaebler-Spira, D. (2004). Drooling, saliva production, and swallowing in cerebral palsy. Developmental Medicine & Child Neurology, 46, 801-806. (Pubitemid 39549653)
24. Sheppard, J. J. (1991). Managing dysphagia in mentally retarded adults. Dysphagia, 6, 83-87.
25. Sheppard, J. J. (2002a). Swallowing and feeding in older people with lifelong disability. Advances in Speech-Language Pathology, 4, 119-121.
26. Sheppard, J. J. (2002b). Dysphagia Disorders Survey and Dysphagia Management Staging Scale: User's manual. Ryde, NSW: Nutritional Management Associates and Centre for Developmental Disability Studies.
27. Sheppard, J. J. (2005). Choking risk assessment and pneumonia risk assessment: Forms and statistical analysis. Lake Hopatcong, NJ: Nutritional Management Associates.
28. Sheppard, J. J. (2006). Developmental disability and swallowing disorders in adults. In J. A. Y. Cichero & B. E. Murdoch (Eds.), Dysphagia: Foundation, theory and practice (pp. 299-318). Chichester, UK: Wiley.
29. Stewart, L. (2003). Development of the Nutrition and Swallowing Checklist, a screening tool for nutrition risk and swallowing risk in people with intellectual disability. Journal of Intellectual & Developmental Disability, 28, 171-187.
30. Strauss, D., Ojdana, K., Shavelle, R., & Rosenbloom, L. (2004). Decline in function and life expectancy of older persons with cerebral palsy. NeuroRehabilitation, 19, 69-78. (Pubitemid 38241493)
31. Talley, N. J., & Wiklund, I. (2005). Patient reported outcomes in gastroesophageal reflux disease: An overview of available measures. Quality of Life Research, 14, 21-33.
32. von Königsmark, M. (2000). Developmental disability: The importance of adequate nutrition. Current Therapeutics, 41, 61-64.
33. Zaffuto-Sforza, C. D. (2005). Aging with cerebral palsy. Physical Medical & Rehabilitation Clinics of North America, 16, 235-249.