A Questionnaire to Assess Carers’ Experience of Stroke Rehabilitation

REFERENCES

• Royal College of Physicians. National Clinical Guidelines for Stroke. 3rd ed. London: Royal College of Physicians; 2008.
   Google Scholar
• Department of Health. National Stroke Strategy (England). London: The Stationary Office; 2007.
   Google Scholar
• National Stroke Foundation. Clinical Guidelines for Stroke Management. Melbourne, Australia: National Stroke Foundation; 2010.
   Google Scholar
• Lindsay P, Bayley M, Hellings C, Hill M, Woodbury E, Phillips S. Canadian best practice recommendations for stroke care (updated 2008). CMAJ. 2008;179(12)(suppl):E1–E93.
   Google Scholar
• National Audit Office. Progress in Improving Stroke Care. London: The Stationery Office; 2010.
   Google Scholar
• Wilkinson PR, Wolfe CDA, Warburton FG, et al. A long-term follow-up of stroke patients. Stroke. 1997;28(3):507–512.
   PubMed Web of Science ®Google Scholar
• Kwakkel G, Wagenaar R, Kollen B, Lankhorst GJ. Predicting disability in stroke—a critical review of the literature. Age Ageing. 1996;25(6):479–489.
   PubMed Web of Science ®Google Scholar
• Glass TA, Matchar DB, Belyea M, Feussner JR. Impact of social support on outcome in first stroke. Stroke. 1993;24(1):64–70.
   PubMed Web of Science ®Google Scholar
• Stroke Unit Trialists' Collaboration. Organised inpatient (stroke unit) care for stroke. Cochrane Database Syst Rev 2007;4:CD000197.
   PubMedGoogle Scholar
• Hirst M. Transitions to informal care in Great Britain during the 1990s. I Epidemiol Community Health. 2002;56(8):579–587.
   PubMed Web of Science ®Google Scholar
• Buckner L, Yeandle S. Valuing Carers-Calculating the Value of Unpaid Care. London: Carers UK; 2007.
   Google Scholar
• van Heugten C, Visser-Meily A, Post M, Lindeman E. Care for carers of stroke patients: evidence-based clinical practice guidelines. I Rehabil Med. 2006;38(3):153–158.
   Google Scholar
• Anderson CS, Linto J, Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke. 1995;26(5):843–849.
   PubMed Web of Science ®Google Scholar
• Clark PC, Dunbar S, Shields C, Viswanathan B, Aycock DM, Wolf SL. Influence of stroke survivor characteristics and family conflict surrounding recovery on caregivers' mental and physical health. Nurs Res. 2004;53(6):406–413.
   PubMed Web of Science ®Google Scholar
• Berg A, Palomaki H, Lonnqvist J, Lehtihalmes M, Kaste M. Depression among caregivers of stroke survivors. Stroke. 2005;36(3):639–643.
   PubMed Web of Science ®Google Scholar
• Choi-Kwon S, Kim HS, Kwon SU, Kim JS. Factors affecting the burden on caregivers of stroke survivors in South Korea. Arch Phys Med Rehabil. 2005;86(5):1043–1048.
   PubMed Web of Science ®Google Scholar
• Carnwath TC, Johnson DA. Psychiatric morbidity among spouses of patients with stroke. BMJ. 1987;294(6569):409–411.
   PubMed Web of Science ®Google Scholar
• White C, Lauzon S, Yaffe M., Wood-Dauphinee S.. Toward a model of quality of life for family caregivers of stroke survivors. Qual Life Res. 2004;13(3):625–638.
   PubMed Web of Science ®Google Scholar
• Draper P, Brocklehurst H. The impact of stroke on the well-being of the patient's spouse: an exploratory study. I Clin Nurs. 2007;16(2): 264–271.
   PubMed Web of Science ®Google Scholar
• Han B, Haley WE. Family caregiving for patients with stroke. Review and analysis. Stroke. 1999;30(7):1478–1485.
   PubMed Web of Science ®Google Scholar
• Low JT, Payne S, Roderick P. The impact of stroke on informal carers: a literature review. Soc Sci Med. 1999;49(6):711–725.
   PubMed Web of Science ®Google Scholar
• McCullagh E, Brigstocke G, Donaldson N, Kalra L. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke. 2005;36(10):2181–2186.
   PubMed Web of Science ®Google Scholar
• McKevitt C, Redfern J, Mold F, Wolfe C. Qualitative studies of stroke: a systematic review. Stroke. 2004;35(6):1499–1505.
   PubMed Web of Science ®Google Scholar
• Palmer S, Glass T. Family function and stroke recovery: a review. Rehabil Psychol. 2003;48(4): 255–265.
   Web of Science ®Google Scholar
• Ostwald S, Bernal M, Cron S, Godwin, K. Stress experienced by stroke survivors and spousal caregivers during the first year after discharge from inpatient rehabilitation. Top Stroke Rehabil. 2009;16(2):93–104.
   PubMed Web of Science ®Google Scholar
• Greenwood N, Mackenzie A, Cloud G, Wilson N. Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies. Disabil Rehabil. 2009;31(5):337–351.
   PubMed Web of Science ®Google Scholar
• Periard M, Ames B. Lifestyle changes and coping patterns among caregivers of stroke survivors. Public Health Nurs. 1993;10(4):252–256.
   PubMed Web of Science ®Google Scholar
• Grant J, Weaver M, Elliot T, Bartolucci A, Giger J. Family caregivers of stroke survivors: characteristics of caregivers at risk for depression. Rehabil Psychol. 2004;49(2):172–179.
   Web of Science ®Google Scholar
• Maclean N, Pound P, Wolfe C, Rudd A. Qualitative analysis of stroke patients' motivation for rehabilitation. BMJ. 2002;321(7268):1051–1054.
   Web of Science ®Google Scholar
• Molloy G, Johnston M, Johnston D, et al. Spousal caregiver confidence and recovery from ambulatory activity limitations in stroke survivors. Health Psychol. 2008;27(2):286–290.
   PubMed Web of Science ®Google Scholar
• Visser-Meily J, Post M Schepes V. Spouses' satisfaction with caregiver support in stroke rehabilitation. Scand J Caring Sci. 2005;19(4):310–316.
   PubMed Web of Science ®Google Scholar
• Hunt D, Smith JA. The personal experience of carers of stroke survivors: an interpretative phenomenological analysis. Disabil Rehabil. 2004;26(16):1000–1011.
   PubMed Web of Science ®Google Scholar
• Morris R, Payne O, Lambert A. Patient, carer and staff experience of a hospital-based stroke service. Intl Qual Health Care. 2007;19(2):105–112.
   PubMed Web of Science ®Google Scholar
• Cameron J, Gignac M. "Timing It Right": a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns. 2008;70(3):305–314.
   PubMed Web of Science ®Google Scholar
• Kelson M, Ford C, Rigge M. Stroke Rehabilitation: Patient and Carer Views. A Report from the Intercollegiate Working Party for Stroke. London: Royal College of Physicians; 1998.
   Google Scholar
• Simon C, Kumar S. Stroke patients' carers' views of formal community support. Br J Community Nurs. 2002;7(3):158–163.
   PubMedGoogle Scholar
• Chesson R, Massie S, Reid A. Carers' perceptions of rehabilitation in a stroke unit. Br Ther Rehabil. 1998;6(1):32–37.
   Google Scholar
• Pound P, Gompertz P, Ebrahim S. Development and results of a questionnaire to measure carer satisfaction after stroke. J Epidemiol Community Health. 1993;47(6):500–505.
   Google Scholar
• Gill L, White L. A critical review of patient satisfaction. Leadersh Health Serv. 2009;22(1):8–19.
   Google Scholar
• Pascoe G. Patient satisfaction in primary care: a literature review and analysis. Eval Program Plann. 1983;6(3-4):185–210.
   PubMedGoogle Scholar
• Krupat E, Fancey M, Cleary P. Information and its impact on satisfaction among surgical patients. Soc Sci Med. 2000;51(12):1817–1825.
   PubMed Web of Science ®Google Scholar
• Crowe R, Hage H, Hampson S, et al. The measurement of satisfaction with healthcare: implications for practice from a systematic review of the literature. Health Technol Assess. 2002;6(32):1–244.
   Google Scholar
• Otani K, Kurz R, Burroughs T, Thomas E, Waterman B. Reconsidering models of patient satisfaction and behavioural intentions. Health Care Manage Rev. 2003;28(1):7–20.
   PubMed Web of Science ®Google Scholar
• Staniszewska SH, Henderson L. Patients' evaluations of the quality of care: influencing factors and the importance of engagement. I Adv Nurs. 2005;49(5):530–537.
   PubMed Web of Science ®Google Scholar
• Mackenzie A, Perry L, Lockhart E, et al. Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disabil Rehabil. 2007;29(2):111–121.
   PubMed Web of Science ®Google Scholar
• Wellwood I, Dennis M, Warlow C. Patients' and carers' satisfaction with acute stroke management. Age Ageing. 1995;24(6):519–524.
   PubMed Web of Science ®Google Scholar
• Jenkinson C, Coulter A, Bruster S, Richards N, Chandola T. Patients' experiences and satisfaction with health care: results of a questionnaire study of specific aspects of care. Qual Sal Health Care. 2002;11(4):335–339.
   PubMed Web of Science ®Google Scholar
• Scholteop Reimer WJM, de Haan RJ, Limburg M, van den Bos G. Patients' satisfaction with care after stroke: relation with characteristics of patients and care. Qual Health Care. 1996;5(3):144–150.
   PubMedGoogle Scholar
• Smith J, Foster A, Young J. A randomized trial to evaluate an education programme for patients and carers after stroke. Clin Rehabil. 2004;18(7): 726–736.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
   Google Scholar
• Simon C, Little P, Birtwistle J, Kendrick T. A questionnaire to measure satisfaction with community services for informal carers of stroke patients: construction and initial piloting. Health Soc Care Community. 2003;11(2):129–137.
   PubMed Web of Science ®Google Scholar
• Edwards P, Roberts I, Clarke M, et al. Increasing response rates to postal questionnaires: systematic review. BMJ. 2002;324(7347):1183–1185.
   PubMed Web of Science ®Google Scholar
• Mahoney Fl, Barthel DW. Functional evaluation: the Barthel Index. Md State Med J. 1965;14 (Feb): 61–65.
   PubMedGoogle Scholar
• Cortina J. What is coefficient alpha? An examination of theory and applications. J Appl Psychol. 1993;78(1):98–104.
   Google Scholar
• Guilford JR Fundamental Statistics in Psychology and Education. 3rd ed. New York: McGraw-Hill; 1956:145.
   Google Scholar
• Lincoln, N, Kneebone, I, McNiven J, Morris R. The Psychological Management of Stroke. Oxford: Wiley Blackwell; 2012:394.
   Google Scholar
• Sitzia J, Wood N. Response rate in satisfaction research: an analysis of 210 published studies. Int J Qual Health Care. 1998;10(4):311–317.
   PubMed Web of Science ®Google Scholar
• Bailey M, Rennie N. Physiotherapy support for carers of stroke patients: a survey of carer's opinions. Br J Ther Rehabil. 1997;4(2):82–85.
   Google Scholar
• Gal I, Doron I. Informal complaints on health services: hidden patterns, hidden potentials. Int J Qual Health Care. 2007;19(3):158–163.
   PubMed Web of Science ®Google Scholar
• Goodman J. Basic facts on customer complaint behaviour and the impact of service on the bottom line. Competitive Advantage. 1999;9(1):1–5.
   Google Scholar
• Schlesinger M, Mitchell S, Elbel B. Voices unheard: barriers to expressing dissatisfaction to health plans. Milbank Q. 2002;80(4):709–55.
   PubMed Web of Science ®Google Scholar
• Fitzpatrick R. Measurement of patient satisfaction. In: Hopkins A, Costain D, eds. Measuring the Outcomes of Medical Care. London: Royal College Physicians; 1990:14–21.
   Google Scholar