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Research Papers

What matters to patients with stroke in India and why: a qualitative study

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Pages 2585-2592 | Received 01 Feb 2019, Accepted 15 Dec 2019, Published online: 27 Dec 2019

References

  • Coulter A. Measuring what matters to patients. BMJ. 2017;356:j816.
  • Porter ME. What is value in health care? N Engl J Med. 2010;363:2477–2481.
  • Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013;346:f167.
  • Tse T, Douglas J, Lentin P, et al. Measuring participation after stroke: a review of frequently used tools. Arch Phys Med Rehabil. 2013;94:177–192.
  • Ali SM, Mulley GP. Is the Barthel Scale appropriate in non-industrialized countries? A view of rural Pakistan. Disabil Rehabil. 1998;20:195–199.
  • Prakash V, Ganesan M, Vasanthan R, et al. Do commonly used functional outcome measures capture activities that are relevant for people with stroke in India? Top Stroke Rehabil. 2017;24:200–205.
  • Queck KK, Fabiaña NL, Woon FP, et al. Cultural issues of the National Institutes of Health Stroke Scale dysphasia and dysarthria components in Singapore – a survey of healthcare workers. Int J Stroke. 2016;11:NP93.
  • Fox-Rushby J, Mwenesi H, Parker M. Questioning premises: health-related quality of life in Kenya. Qual Life Res. 2016;4:387–506.
  • Bowden A, Fox-Rushby JA. A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa, Asia, Eastern Europe, the Middle East, South America. Soc Sci Med. 2003;57:1289–1306.
  • Niti M, Ng T-P, Chiam P-C, et al. Item response bias was present in instrumental activity of daily living scale in Asian older adults. J Clin Epidemiol. 2007;60:366–374.
  • Shah S, Cooper B, Maas F. The Barthel index and ADL evaluation in stroke rehabilitation in Australia, Japan, the UK and the USA. Aust Occup Ther J. 1992;39:5–13.
  • Fillenbaum GG, Chandra V, Ganguli M, et al. Development of an activities of daily living scale to screen for dementia in an illiterate rural older population in India. Age Ageing. 1999;28:161–168.
  • Hunt SM, Alonso J, Bucquet D, et al. Cross-cultural adaptation of health measures. European Group for Health Management and Quality of Life Assessment. Health Policy Amst Neth. 1991;19:33–44.
  • Wang PP, Badley EM, Gignac M. Exploring the role of contextual factors in disability models. Disabil Rehabil. 2006;28:135–140.
  • Ganguli M, Ratcliff G, Chandra V, et al. A Hindi version of the MMSE: the development of a cognitive screening instrument for a largely illiterate rural elderly population in India. Int J Geriat Psychiatry. 1995;10:367–377.
  • Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Arch Phys Med Rehabil. 2009;90:S22–S35.
  • Lawton G, Lundgren-Nilsson A, Biering-Sørensen F, et al. Cross-cultural validity of FIM in spinal cord injury. Spinal Cord. 2006;44:746–752.
  • Lundgren-Nilsson A, Grimby G, Ring H, et al. Cross-cultural validity of functional independence measure items in stroke: a study using Rasch analysis. J Rehabil Med. 2005;37:23–31.
  • Küçükdeveci AA, Yavuzer G, Tennant A, et al. Adaptation of the modified Barthel index for use in physical medicine and rehabilitation in Turkey. Scand J Rehabil Med. 2000;32:87–92.
  • McKenna SP. Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science. BMC Med. 2011;9:86.
  • Resnik L, Bradford DW, Glynn SM, et al. Issues in defining and measuring veteran community reintegration: proceedings of the Working Group on Community Reintegration, VA Rehabilitation Outcomes Conference, Miami, Florida. J Rehabil Res Dev. 2012;49:87–100.
  • Pound P, Gompertz P, Ebrahim S. A patient-centred study of the consequences of stroke. Clin Rehabil. 1998;12:338–347.
  • Daniel K, Wolfe CDA, Busch MA, et al. What are the social consequences of stroke for working-aged adults? A systematic review. Stroke. 2009;40:e431–e440.
  • Woodman P, Riazi A, Pereira C, et al. Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors. Disabil Rehabil. 2014;36:2031–2043.
  • Sarre S, Redlich C, Tinker A, et al. A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience. Disabil Rehabil. 2014;36:716–726.
  • Luker J, Lynch E, Bernhardsson S, et al. Stroke survivors’ experiences of physical rehabilitation: a systematic review of qualitative studies. Arch Phys Med Rehabil. 2015;96:1698–1708.e10.
  • Dalvandi A, Ekman S-L, Khankeh HR, et al. Rehabilitation experts’ experience of community rehabilitation services for stroke survivors in Iran. Top Stroke Rehabil. 2012;19:395–404.
  • Kamalakannan S, Gudlavalleti Venkata M, Prost A, et al. Rehabilitation needs of stroke survivors after discharge from hospital in India. Arch Phys Med Rehabil. 2016;97:1526–1532.e9.
  • Urimubenshi G, Rhoda A. Environmental barriers experienced by stroke patients in Musanze district in Rwanda: a descriptive qualitative study. Afr Health Sci. 2011;11:398–405.
  • Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force Report: Part 1—eliciting concepts for a new PRO instrument. Value Health. 2011;14:967–977.
  • Patrick DL, Burke LB, Powers JH, Scott JA, et al. Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health. 2007;10:S125–S137.
  • Kaufman SR. Toward a phenomenology of boundaries in medicine: chronic illness experience in the case of stroke. Top Stroke Rehabil. 2011;18:6–17.
  • Klaus D, Tipandjan A. Son preference in India: shedding light on the north-south gradient. Comp Popul Stud. 2014;40:77–102.
  • Arokiasamy P, Parasuraman S, Sekher TV, et al. Study on global AGEing and adult health (SAGE), Wave 1: India National Report [Internet]. World Health Organization; 2013 [cited 2013 Mar 18]. Available from: http://apps.who.int/healthinfo/systems/surveydata/index.php/catalog/65
  • TNS India. Needs assessment study among urban elderly—a rapid assessment. New Delhi (India): Helpage India; 2008.
  • Prakash V, R Patel S, Hariohm K, et al. Importance of squatting and sitting on the floor: perspectives and priorities of rural Indian patients with stroke. Top Stroke Rehabil. 2016;23:240–244.
  • Chino N. Efficacy of Barthel index in evaluating activities of daily living in Japan, the United States, and United Kingdom. Stroke J Cereb Circ. 1990;21:II64–II65.
  • Leung SOC, Chan CCH, Shah S. Development of a Chinese version of the modified Barthel index – validity and reliability. Clin Rehabil. 2007;21:912–922.
  • Senanarong V, Harnphadungkit K, Prayoonwiwat N, et al. A new measurement of activities of daily living for Thai elderly with dementia. Int Psychogeriatr. 2003;15:135–148.
  • Wagner AK, Gandek B, Aaronson NK, et al. Cross-cultural comparisons of the content of SF-36 translations across 10 countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol. 1998;51:925–932.
  • Chadda RK, Deb KS. Indian family systems, collectivistic society and psychotherapy. Indian J Psychiatry. 2013;55:299–309.
  • Triandis HC. Collectivism and individualism as cultural syndromes. Cross Cult Res. 1993;27:155–180.
  • Rajkumar S, Kumar S. Editorial. Measuring quality of life among the elderly in developing countries. Int J Geriat Psychiatry. 1996;11:1–6.
  • Guyatt GH. The philosophy of health-related quality of life translation. Qual Life Res. 1993;2:461–465.
  • WHO. International Classification of Functioning, Disability and Health (ICF) [Internet]. WHO; 2015 [cited 2015 Aug 22]. Available from: http://www.who.int/classifications/icf/en/
  • Brown M. Participation: the insider’s perspective. Arch Phys Med Rehabil. 2010;91:S34–S37.
  • Hammel J, Magasi S, Heinemann A, et al. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil. 2008;30:1445–1460.

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