Estado actual de investigación en parálisis cerebral y envejecimientorevisión sistemática

  1. Patricia Solís García 1
  2. Sara Real Castelao 2
  1. 1 Universidad Internacional de La Rioja
    info

    Universidad Internacional de La Rioja

    Logroño, España

    ROR https://ror.org/029gnnp81

  2. 2 Centro Asociado UNED Ponferrada
Revue:
Revista Española de Discapacidad (REDIS)

ISSN: 2340-5104

Année de publication: 2019

Volumen: 7

Número: 2

Pages: 103-122

Type: Article

DOI: 10.5569/2340-5104.07.02.06 DIALNET GOOGLE SCHOLAR lock_openDialnet editor

D'autres publications dans: Revista Española de Discapacidad (REDIS)

Résumé

The aim of this paper review is to analyse the publications in the area of cerebral palsy and ageing, with respect to type and volume of publications, methodology, thematic areas and age of cut of the sample. The importance of the theme derives from the increase in the life expectancy of this group and its demographic growth, which leads to the emergence of a new group with specific demands to which the scientific community must respond. A search of the main databases and an analysis following the PRISMA method are proposed, in order to make the review systematic and replicable. After the analysis of the publications, the predominance of empirical studies in the medical area, methodological weaknesses common to the research area and the need to carry out longitudinal and psychosocial research that allows an integral response are highlighted.

Références bibliographiques

  • Alcedo, M. Á. et al. (2017): “Personas con discapacidad intelectual que envejecen: evaluación de necesidades percibidas”. International Journal of Clinical and Health Psychology, 17 (1): 38-45.
  • Andersson, C. y Mattsson, E. (2001): “Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion”. Developmental Medicine and Child Neurology, 43 (2): 76-82.
  • Badía-Corbella, M. (2007): “Tendencias actuales de investigación ante el nuevo concepto de parálisis cerebral”. Siglo Cero: Revista Española sobre Discapacidad Intelectual, 38 (3): 25-38.
  • Badía-Corbella, M. et al. (2013): “Calidad de vida en los pacientes con parálisis cerebral en proceso de envejecimiento”. Rehabilitación, 47 (4): 194-199. doi:10.1016/j.rh.2013.02.002.
  • Balandin, S. et al. (2006): “Assessing the loneliness of older people with cerebral palsy”. Disability and Rehabilitation, 28 (8): 469–479. doi:10.1080/09638280500211759.
  • Balandin, S. et al. (2009): “Understanding mealtime changes for adults with cerebral palsy and the implications for support services”. Journal of Intellectual & Developmental Disability, 34 (3): 197–206. doi:10.1080/13668250903074489.
  • Ballin, L. y Balandin, S. (2007): “An exploration of loneliness: Communication and the social networks of older people with cerebral palsy”. Journal of Intellectual & Developmental Disability, 32 (4): 315–326. doi:10.1080/13668250701689256.
  • Beadle-Brown, J. et al. (2015): “Observing practice leadership in intellectual and developmental disability services”. Journal of Intellectual Disability Research, 59: 1081-1093. doi:10.1111/jir.12208.
  • Benner, J. L. et al. (2017): “Long-Term Deterioration of Perceived Health and Functioning in Adults with Cerebral Palsy”. Archives of Physical Medicine and Rehabilitation, 98 (11): 2196–2205. doi:10.1016/j.apmr.2017.03.013.
  • Berjano, E. y García, E. (2010): Discapacidad intelectual y envejecimiento: Un problema social del siglo XXI. Madrid: FEAPS.
  • Bottos, M. et al. (2001): “Functional status of adults with cerebral palsy and implications for treatment of children”. Developmental Medicine and Child Neurology, 43 (08): 516-528. doi:10.1017/s0012162201000950.
  • Brunton, L. K. y Rice, C. L. (2012): “Fatigue in cerebral palsy: A critical review”. Developmental Neurorehabilitation, 15 (1): 54–62. doi:10.3109/17518423.2011.629633.
  • Carmeli, E. et al. (2004): “A comparison between older persons with Down syndrome and a control group: clinical characteristics, functional status and sensorimotor function”. Down’s syndrome, research and practice: the journal of the Sarah Duffen Centre, 9 (1): 17-24 (en línea). , acceso 22 de noviembre de 2019.
  • Cans, C. et al. (2000): “Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers”. Developmental medicine and child neurology, 42 (12): 816-824. https://doi.org/10.1017/S0012162200001511.
  • Chadwick, D. D. y Jolliffe, J. (2009): “A descriptive investigation of dysphagia in adults with intellectual disabilities”. Journal of Intellectual Disability Research, 53 (1): 29–43. doi:10.1111/j.1365-2788.2008.01115.x.
  • Cleaver, S. et al. (2008): “Relationship Between Mobility Limitations and the Places Where Older Adults with Intellectual Disabilities Live”. Journal of Policy and Practice in Intellectual Disabilities, 5 (4): 253–258. doi:10.1111/j.1741-1130.2008.00186.x.
  • Coppus, A. M. W. (2013): “People with intellectual disability: What do we know about adulthood and life expectancy?”. Developmental Disabilities Research Reviews, 18 (1): 6–16. doi:10.1002/ddrr.1123.
  • Coyle, C. E. y Mutchler, J. E. (2017): “Aging with Disability: Advancement of a Cross-Disciplinary Research Network”. Research on Aging, 39 (6): 683-692.
  • Coyle, C. et al. (2016): “The role of aging and disability resource centers in serving adults aging with intelectual disabilities and their families: fndings from seven states”. Journal of Aging and Social Policy, 28 (1): 1-14.
  • Dark, L. J. et al. (2016): “Communication changes experienced by adults with cerebral palsy as they age”. International Journal of Speech-Language Pathology, 18 (6): 521–532. doi:10.3109/17549507.2016.1143976.
  • Del Barrio, J. S. et al. (2006): “Retos del envejecimiento de las personas con discapacidad intelectual”. Revista INFAD de Psicología, 1 (2): 47-56. doi.org/10.17060/ijodaep.2016.n2.v1.559.
  • Fernández-Ríos, L. y Buela-Casal, G. (2009): “Standards for the preparation and writing of Psychology review articles”. International Journal of Clinical and Health Psychology, 9 (2): 329-344.
  • Frisch, D. y Msall, M. E. (2013): “Health, functioning, and participation of adolescents and adults with cerebral palsy: A review of outcomes research”. Developmental Disabilities Research Reviews, 18 (1): 84–94. doi:10.1002/ddrr.1131.
  • Galambos, N. L. et al. (2007): “Subjective Age in the Transition to Adulthood for Persons with and without Motor Disabilities”. Journal of Youth and Adolescence, 36 (6): 825–834. doi:10.1007/s10964-007-9190-6.
  • González-Alonso, M. Y. et al. (2017): “Envejecimiento en parálisis cerebral, un reto en investigación e innovación: revisión sistemática”. Universitas Psychologica, 16 (3): 1-15. doi.org/10.11144/Javeriana.upsy16-3.epcr.
  • Goodwin, D. L. y Compton, S. G. (2004): “Physical Activity Experiences of Women Aging with Disabilities”. Adapted Physical Activity Quarterly, 21 (2): 122–138. doi:10.1123/apaq.21.2.122.
  • Haak, P. et al. (2009): “Cerebral palsy and aging”. Developmental Medicine & Child Neurology, 51:16–23. doi:10.1111/j.1469-8749.2009.03428.x.
  • Haddad, A. et al. (2007): “A pharmacist’s introduction to the effects of aging on patients with cerebral palsy”. The Consultant Pharmacist®, 22 (8): 669-674. doi.org/10.4140/tcp.n.2007.669.
  • Heller, T. et al. (2002): “Determinants of exercise in adults with cerebral palsy”. Public Health Nursing, 19 (3): 223-231. doi.org/10.1046/j.0737-1209.2002.19311.x.
  • Hemsley, B. et al. (2007a): “Family Caregivers Discuss Roles and Needs in Supporting Adults with Cerebral Palsy and Complex Communication Needs in the Hospital Setting”. Journal of Developmental and Physical Disabilities, 20 (3): 257–274. doi:10.1007/s10882-007-9095-z.
  • Hemsley, B. et al. (2007b): “Older Unpaid Carers’ Experiences Supporting Adults with Cerebral Palsy and Complex Communication Needs in Hospital”. Journal of Developmental and Physical Disabilities, 19 (2): 115–124. doi:10.1007/s10882-007-9040-1.
  • Horsman, M. et al. (2010): “Growing Older With Cerebral Palsy”. Pediatric Physical Therapy, 22 (3): 296–303. doi:10.1097/pep.0b013e3181eabc0f.
  • Horstmann, H. M. et al. (2009): “Orthopaedic issues in the musculoskeletal care of adults with cerebral palsy”. Developmental Medicine & Child Neurology, 51: 99-105. doi.org/10.1111/j.1469-8749.2009.03417.x.
  • Instituto Nacional de Estadística (INE) (2008). Encuesta sobre discapacidad, autonomía personal y situaciones de dependencia (en línea). , acceso el 10 de junio de 2018.
  • Jahoda, A. et al. (2015): “A feasibility study of behavioural activation for depressive symptoms in adults with intellectual disabilities”. Journal of Intellectual Disability Research, 59: 1010-1021. doi:10.1111/jir.12175.
  • Jones, G. C. (2009): “Aging with cerebral palsy and other disabilities: personal reflections and recommendations”. Developmental Medicine & Child Neurology, 51: 12-15.
  • Judge, J. et al. (2010): “Activity, aging, and retirement: The views of a group of Scottish people with intellectual disabilities”. Journal of Policy and Practice in Intellectual Disabilities, 7: 295-301. doi:10.1177/0164027504271349.
  • Klingbeil, H. et al. (2004): “Aging with a disability”. Archives of physical medicine and rehabilitation, 85: 68-73. doi:10.1016/j.apmr.2004.03.014.
  • Lifshitz, H. et al. (2008): “Health status and ADL functioning of older persons with intelectual disability: Community residence versus residential care centers”. Research in Developmental Disabilities, 29 (4): 301–315. doi:10.1016/j.ridd.2007.06.005.
  • Low Choy, N. et al. (2003): “The efcacy of a work-station intervention programme to improve functional ability and flexibility in ageing clients with Cerebral Palsy: a pilot study”. Disability and Rehabilitation, 25 (21): 1201–1207. doi:10.1080/09638280310001599998.
  • Martin, L. et al. (2017): “The Power of Population Health Data on Aging and Intellectual and Developmental Disabilities: Reactions of Knowledge Users”. Journal of Policy and Practice in Intellectual Disabilities, 14: 268-278. doi.org/10.1177/1744629511413506.
  • McCallion, P. et al. (2019): “Epidemiological Issues in Intellectual Disability and Aging Research”, en Prasher V. y Janicki M. (eds.): Physical Health of Adults with Intellectual and Developmental Disabilities . Birmingham: Springer. doi.org/10.1007/978-3-319-90083-4_5.
  • McPhee, P. G. et al. (2016): “Fatigue and its relationship with physical activity, age, and body composition in adults with cerebral palsy”. Developmental Medicine & Child Neurology, 59 (4): 367–373. doi:10.1111/dmcn.13306.
  • Michelsen, S. I. et al. (2006): “Social integration of adults with cerebral palsy”. Developmental Medicine & Child Neurology, 48 (08): 643. doi:10.1017/s0012162206001368.
  • Mitchell, J. M. et al. (2006): “The Effects of Aging on Employment of People With and Without Disabilities”. Rehabilitation Counseling Bulletin, 49 (3): 157–165. doi:10.1177/00343552060490030301.
  • Moll, L. R. y Cott, C. A. (2012): “The paradox of normalization through rehabilitation: growing up and growing older with cerebral palsy”. Disability and Rehabilitation, 35 (15): 1276–1283. doi:10.3109/09638288.2012.726689.
  • Morgan, P. et al. (2014): “Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy”. Journal of Intellectual & Developmental Disability, 39 (3): 282–289. doi:10.3109/13668250.2014.927841.
  • Morgan, P. y McGinley, J. (2014): “Gait function and decline in adults with cerebral palsy: a systematic review”. Disability and Rehabilitation, 36 (1): 1–9. doi:10.3109/09638288.2013.775359.
  • Morgan, P. et al. (2015): “Perceived cause, environmental factors, and consequences of falls in adults with cerebral palsy: a preliminary mixed methods study”. Rehabilitation research and practice, 2015. doi.org/10.1155/2015/196395.
  • Moro, T. T. et al. (2017): “Agency, social and healthcare supports for adults with intelectual disability at the end of life in out‐of‐home, non‐institutional community residences in Western nations: A literature review”. Journal of Applied Research in Intellectual Disabilities. 30 (6):1045–1056. doi.org/10.1111/jar.12374.
  • Moher, D. et al. (2009): “Preferred Reporting Items for Systematic Reviews and MetaAnalyses: The PRISMA Statement”. PLoS Medicine, 6: e1000097. doi:10.1371/journal.pmed1000097.
  • Mudge, S. et al. (2016): “Ageing with cerebral palsy; what are the health experiences of adults with cerebral palsy? A qualitative study”. BMJ Open, 6 (10): e012551. doi:10.1136/bmjopen-2016-012551.
  • Ng, N. et al. (2015): “Prevalence of older people with intellectual disability in Sweden: a spatial epidemiological analysis”. Journal of Intellectual Disability Research, 59: 1155-1167. doi:10.1111/jir.12219.
  • OMS (2001): Clasifcación Internacional del Funcionamiento de la Discapacidad y de la Salud (CIF). Madrid: IMSERSO.
  • Perestelo-Pérez, L. (2013): “Standards on how to develop and report systematic reviews in Psychology and Health”. International Journal of Clinical and Health Psychology, 13 (1): 49-57. doi.org/10.1016/S1697-2600(13)70007-3Get.
  • Peterson, M. D. et al. (2013): “Chronic disease risk among adults with cerebral palsy: the role of premature sarcopenia, obesity and sedentary behaviour”. Obesity Reviews, 14 (2): 171–182. doi:10.1111/j.1467-789x.2012.01052.x.
  • Peterson, M. D. et al. (2012): “Secondary muscle pathology and metabolic dysregulation in adults with cerebral palsy”. American Journal of Physiology-Endocrinology and Metabolism, 303 (9): E1085–E1093. doi:10.1152/ajpendo.00338.2012.
  • Petretto, D. R. et al. (2019): “Aging and disability: the need of a bridge to promote wellbeing”. Gerontology & Geriatric Medicine, 4 (5): 1-6. doi: 10.19080 / OAJGGM.2019.04.555648.
  • Platt, M. J. (2016): “Counting cases of cerebral palsy”. Developmental Medicine & Child Neurology, 59 (3): 243. doi:10.1111/dmcn.13304.
  • Pueyo-Benito, R. y Vendrell-Gómez, P. (2002): “Neuropsicología de la Parálisis Cerebral”. Revista de Neurología, 34: 1080-1087.
  • Robaina, G. R. et al. (2007): “Defnición y clasifcación de la parálisis cerebral: ¿un problema ya resuelto?”. Revista de Neurología, 45 (2): 110-117. doi.org/10.33588/rn.4502.2006595.
  • Rosenbaum, P. et al. (2007): “A report: the defnition and classifcation of cerebral palsy”. Dev Med Child Neurol, Suppl. 109: 8–14.
  • Sandström, K. et al. (2009): “Prerequisites for carrying out physiotherapy and physical activity – experiences from adults with cerebral palsy”. Disability and Rehabilitation, 31 (3): 161–169. doi:10.1080/09638280701850934.
  • Schepens, H. R. et al. (2017): “What Indicates and Determines Quality of Life for Elderly People with Intellectual Disabilities?”. Journal of Mental Health Research in Intellectual Disabilities, 10: 46-46. doi.org/10.1111/jar.12559.
  • Shortland, A. (2009): “Muscle defcits in cerebral palsy and early loss of mobility: can we learn something from our elders?”. Developmental Medicine & Child Neurology, 51: 59-63. doi.org/10.1111/j.1469-8749.2009.03434.x.
  • Svien, L. R. et al. (2008): “Issues in aging with cerebral palsy”. Topics in Geriatric Rehabilitation, 24 (1): 26-40. doi:10.1111 / j.1469-8749.2009.03428.x.
  • Strydom, A. et al. (2019): “Physical Health and Clinical Phenotypes”, en Prasher, V. y Janicki, M. (eds.): Physical Health of Adults with Intellectual and Developmental Disabilities. Birmingham: Springer. doi.org/10.1007/978-3-319-90083-4_5.
  • Tarsuslu, T. y Livanelioglu, A. (2010): “Relationship between quality of life and functional status of young adults and adults with cerebral palsy”. Disability and Rehabilitation, 32 (20): 1658–1665. doi:10.3109/09638281003649904.
  • Taylor, N. F. et al. (2004): “Adults with cerebral palsy beneft from participating in a strength training programme at a community gymnasium”. Disability and Rehabilitation, 26 (19): 1128–1134. doi:10.1080/09638280410001712387.
  • Thorpe, D. (2009): “The role of ftness in health and disease: status of adults with cerebral palsy”. Developmental Medicine & Child Neurology, 51: 52-58. doi.org/10.1111/j.1469-8749.2009.03433.x.
  • Tosi, L. L et al. (2009): “Adults with cerebral palsy: a workshop to defne the challenges of treating and preventing secondary musculoskeletal and neuromuscular complications in this rapidly growing population”. Developmental Medicine & Child Neurology, 51: 2–11. doi:10.1111/j.1469-8749.2009.03462.x.
  • Turk, M. A. (2009): “Health, mortality, and wellness issues in adults with cerebral palsy”. Developmental Medicine & Child Neurology, 51: 24-29. doi.org/10.1111/j.1469-8749.2009.03429.x.
  • Turk, M. A. et al. (2001): “The health of women with cerebral palsy”. Physical medicine and rehabilitation clinics of North America, 12 (1): 153-168. doi.org/10.1016/j.apmr.2004.03.014.
  • Verdugo, M. A. y Navas, P. (2017): Todos somos todos: derechos y calidad de vida de las personas con discapacidad intelectual y mayores necesidades de apoyos. Madrid: Real Patronato sobre Discapacidad.