Needs of Persons with Neurological Disorders
DOI:
https://doi.org/10.29120/ijpsw.2018.v9.i1.61Abstract
Background: In India Many persons with neurological disorder (PwND) get discharged from several hospitals with significant unmet needs. Aim: To assess the needs of persons with neurological disorders in a tertiary care hospital, Bangalore, India. Method and Materials: It was a cross-sectional deceptive study where thirty PwND availing the in-patient services at NIMHANS, Bangalore were selected through purposive sampling. Camberwell Assessment of Need – Research version was used. Results: Large majority (90%) of the respondents have unmet needs in daytime activities, psychological distress, information about illness, sex. Majority (70%) have unmet needs in job, self-care, medicines, mobility, child care. Half (50%) of the respondents have unmet need in accommodation, intimate and social relationships, finance. Three-fourth revealed that their need for food, safety and social welfare needs have been met. Conclusion: Patients from lower economic, educational status and urban domicile have more service needs. Present study attempts a systematic need assessment which has implication in addressing the unmet needs of PwND to improve their quality of life.
Keywords: Need assessment, neurology, discharge planning
References
Gourie-Devi M. Epidemiology of neurological disorders in India: Review of background, prevalence and incidence of epilepsy, stroke, Parkinson's disease and tremors. Neurol India 2014;62:588-98.
Narasimhan Lakshmi R, et al. The Needs of women with epilepsy in Chennai, India. Neurology Asia 2007; 12 (Supplement 1): 102.
Lai ChooOng. Anxiety and depression in children with epilepsy. Neurology Asia; 2013: 18: 39-41.
Rajalakshmi, R, Lalitha, K. Psychosocial care needs of the parents having children with epilepsy. International Journal of Epilepsy, 2014; 1(1): 21–26.
Widnes SF, Schjott J, Granas AG. Risk perception and medicines information needs in pregnant women with epilepsy--a qualitative study. Seizure. 2012 Oct;21(8):597-602.
Norldi DR. Special needs of the adolescent with epilepsy. Epilepsia. 2001;42Suppl 8:10-7.
Hafsteinsdóttir TB, Vergunst M, Lindeman E, Schuurmans M. Educational needs of patients with a stroke and their caregivers: a systematic review of the literature. Patient EducCouns. 2011 Oct;85(1):14-25.
Sumathipala K, Radcliffe E, Sadler E, et al. Identifying the long-term needs of stroke survivors using the International Classification of Functioning. Disabil Health. 2011;8:31–44.
Andrew NE, Kilkenny M, Naylor R, Purvis T, Lalor E, Moloczij N, Cadilhac DA; National Stroke Foundation. Understanding long-term unmet needs in Australian survivors of stroke. Int J Stroke. 2014 Oct;9Suppl A100:106-12.
Talbot LR, Viscogliosi C, Desrosiers J, Vincent C, Rousseau J, Robichaud L. Identification of rehabilitation needs after a stroke: an exploratory study. Health and Quality of Life Outcomes. 2004;2:53.
Tsai PC, Yip PK, Tai JJ, Lou MF. Needs of family caregivers of stroke patients: a longitudinal study of caregivers' perspectives. Patient Prefer Adherence. 2015 Mar 18;9:449-57.
Andrew NE, Kilkenny MF, Naylor R, Purvis T, Cadilhac DA. The relationship between caregiver impacts and the unmet needs of survivors of stroke. Patient preference and adherence. 2015;9:1065-1073.
GalitKleiner-Fisman, Pearl Gryfe, and Gary Naglie. A Patient-Based Needs Assessment for Living Well with Parkinson Disease: Implementation via Nominal Group Technique, Parkinson’s Disease, 2013.
Eluvathingol Jose G, Portillo MC. Needs and support networks of informal caregivers of people with Parkinson's disease: a literature review. Rev Enferm. 2013 Jul-Aug;36(7-8):52-60.
Benbow CL, Koopman WJ. Clinic-based needs assessment of individuals with multiple sclerosis and significant others: implications for program planning-psychological needs. RehabilNurs. 2003 Jul-Aug;28(4):109-16.
Borreani C, Bianchi E, Pietrolongo E, et al. Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention. Feany MB, ed. PLoS ONE. 2014;9(10):e109679.
Strup J, Golla H, Galushko M, Buecken R, Ernstmann N, Hahn M, Pfaff H, Voltz R. Self-rating makes the difference: identifying palliative care needs of patients feeling severely affected by multiple sclerosis. Palliat Support Care. 2015 Jun;13(3):733-40.
Mehr SR, Zimmerman MP. Reviewing the unmet needs of patients with multiple sclerosis. Am health drug benefits. 2015 Nov;8(8):426-31.
MacLurg K, Reilly P, Hawkins S, Gray O, Evason E, Whittington D. A primary care-based needs assessment of people with multiple sclerosis. Br J Gen Pract. 2005 May;55(514):378-83.
Lonergan R., Kinsella K., Fitzpatrick P., et al. Unmet needs of multiple sclerosis patients in the community. Mult Scler Relat Disord. 2015; 4:144–150.
Ytterberg C, Johansson S, Gottberg K, Holmqvist LW, von Koch L. Perceived needs and satisfaction with care in people with multiple sclerosis: a two-year prospective study. BMC Neurol. 2008 Sep 29;8:36.
Ponzio M., Tacchino A., Zaratin P., et al. Unmet care needs of people with a neurological chronic disease: a cross-sectional study in Italy on multiple sclerosis. Eur J Public Health. 2015; 25:775–780.
Golla H, Mammeas, Galushko M, et al. Unmet needs of caregivers of severely affected multiple sclerosis patients: a qualitative study. Palliat Support Care. 2015:1–9.
Senders A, Sando K., Wahbeh H, et al. Managing psychological stress in the multiple sclerosis medical visit: patient perspectives and unmet needs. J Health Psychol. 2014. Dec 19.
Koopman W. Need assessment of persons with multiple sclerosis and significant others: using the literature review and focus groups for preliminary survey questionnaire development. Axone. 2003 Jun;24(4):10-5.
Forbes A, While A, Taylor M. What people with multiple sclerosis perceive to be important to meeting their needs. J Adv Nurs. 2007 Apr;58(1):11-22.
vanTeijlingen ER, Friend E, Kamal AD. Service use and needs of people with motor neurone disease and their carers in Scotland. Health Soc Care Community. 2001 Nov;9(6):397-403.
Whitehead B, O'Brien MR, Jack BA, Mitchell D. Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med. 2012 Jun;26(4):368-78.
Dawson S, Kristjanson LJ, Toye CM, Flett P. Living with Huntington's disease: need for supportive care. Nurs Health Sci. 2004 Jun;6(2):123-30.
Soltysiak B, Gardiner P, Skirton H Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting. J Clin Nurs. 2008 Apr;17(7B):226-34.
Oeseburg B, Jansen D, De Keyser J. Reducing discrepancies between MS patients' needs and use of healthcare services by applying a transmural care model. J Neurosci Nurs. 2004 Aug;36(4):214-9, 230.
Moorer P, Suurmeijer TH, Zwanikken CP. Health care utilization by people with multiple sclerosis in The Netherlands: results of two separate studies. Disabil Rehabil. 2000 Nov 10;22(16):695-701.
Asadi-Lari M, Packham C, Gray D. Need for redefining needs. Health and Quality of Life Outcomes. 2003;1:34.
DoH . The health of the nation : a strategy for health in England. London, Department of Health; 1992.
Bradshaw J. The concept of social need. In: Gilbert N, Specht H, editor. Planning for social welfare, issues, models and tasks. Upper Saddle River: Prentice Hall; 1977. pp. 290–296.
Phelan M, Slade M, Thornicroft G, Dunn G, Holloway F, Wykes T, Strathdee G, Loftus L, McCrone P, Hayward P. The Camberwell Assessment of Need: the validity and reliability of an instrument to assess the needs of people with severe mental illness. Br J Psychiatry. 1995 Nov; 167(5):589-95.
Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013 Feb 15;12:7
Kristjanson LJ, Aoun SM, Yates P. Are supportive services meeting the needs of Australians with neurodegenerative conditions and their families? J Palliat Care. 2006 Autumn;22(3):151-7.
Turner-Stokes L, McCrone P, Jackson DM, et al The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability BMJ Open 2013;3:e002353
Turner-Stokes L, Nyein K, Halliwell D. The North-wick Park Care Needs Assessment (NPCNA): a directly costable outcome measure in rehabilitation. ClinRehabil 1999; 13: 253–267
Sato A, Ricks K, Watkins S. Needs of caregivers of clients with multiple sclerosis. J Community Health Nurs. 1996;13(1) 31-42.
Austin JK, Dunn D, Huster GA, Rose DF. Development of scales to measure psychosocial care needs of children with seizures and their parents. Journal of Neuroscience Nursing. 1998;30(3):155–160.
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