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Forster A, Mellish K, Farrin A, et al. Development and evaluation of tools and an intervention to improve patient- and carer-centred outcomes in Longer-Term Stroke care and exploration of adjustment post stroke: the LoTS care research programme. Southampton (UK): NIHR Journals Library; 2014 Dec. (Programme Grants for Applied Research, No. 2.6.)

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Development and evaluation of tools and an intervention to improve patient- and carer-centred outcomes in Longer-Term Stroke care and exploration of adjustment post stroke: the LoTS care research programme.

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References

1.
National Audit Office. Reducing Brain Damage: Faster Access to Better Stroke Care. London: National Audit Office; 2005.
2.
Intercollegiate Stroke Working Party. National Clinical Guidelines for Stroke, 3rd edn. London: Royal College of Physicians; 2008.
3.
Feigin VL, Barker-Collo S, Parag V, Senior H, Lawes CM, Ratnasabapathy Y, et al. Auckland Stroke Outcomes Study. Part 1: gender, stroke types, ethnicity, and functional outcomes 5 years poststroke. Neurology 2010;75:1597–607. 10.1212/WNL.0b013e3181fb44b3. [PubMed: 21041783] [CrossRef]
4.
McKevitt C, Fudge N, Redfern J, Sheldenkar A, Crichton S, Rudd AR, et al. Self-reported long-term needs after stroke. Stroke 2011;42:1398–403. 10.1161/STROKEAHA.110.598839. [PubMed: 21441153] [CrossRef]
5.
Hackett ML, Yapa C, Parag V, Anderson CS. Frequency of depression after stroke: a systematic review of observational studies. Stroke 2005;36:1330–40. 10.1161/01.STR.0000165928.19135.35. [PubMed: 15879342] [CrossRef]
6.
Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing 2006;35:273–9. 10.1093/ageing/afj074. [PubMed: 16638767] [CrossRef]
7.
Kwok T, Pan JH, Lo R, Song X. The influence of participation on health-related quality of life in stroke patients. Disabil Rehabil 2011;33:1990–6. 10.3109/09638288.2011.553709. [PubMed: 21955053] [CrossRef]
8.
Hare R, Rogers H, Lester H, McManus R, Mant J. What do stroke patients and their carers want from community services? Fam Pract 2006;23:131–6. 10.1093/fampra/cmi098. [PubMed: 16308328] [CrossRef]
9.
Salter K, Hellings C, Foley N, Teasell R. The experience of living with stroke: a qualitative meta-synthesis. J Rehabil Med 2008;40:595–602. 10.2340/16501977-0238. [PubMed: 19020691] [CrossRef]
10.
Murray J, Young J, Forster A. Review of longer-term problems after a disabling stroke. Rev Clin Gerontol 2007;17:277–92. 10.1017/S0959259808002608. [CrossRef]
11.
Anderson CS, Linto J, Stewartwynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke 1995;26:843–9. 10.1161/01.STR.26.5.843. [PubMed: 7740578] [CrossRef]
12.
Guidetti S, Andersson K, Andersson M, Tham K, Von Koch L. Client-centred self-care intervention after stroke: a feasibility study. Scand J Occup Ther 2010;17:276–85. 10.3109/11038120903281169. [PubMed: 20187757] [CrossRef]
13.
Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke 2009;4:285–92. 10.1111/j.1747-4949.2009.00289.x. [PubMed: 19689757] [CrossRef]
14.
Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal carers of stroke survivors – factors influencing carers: a systematic review of quantitative studies. Disabil Rehabil 2008;30:1329–49. 10.1080/09638280701602178. [PubMed: 19230230] [CrossRef]
15.
Department of Health. National Stroke Strategy. London: Department of Health; 2007.
16.
Department of Health. National Service Framework for Older People. London: Department of Health; 2001.
17.
Mant J, Carter J, Wade DT, Winner S. Family support for stroke: a randomised controlled trial. Lancet 2000;356:808–13. 10.1016/S0140-6736(00)02655-6. [PubMed: 11022928] [CrossRef]
18.
Forster A, Young J. Specialist nurse support for patients with stroke in the community: a randomised controlled trial. BMJ 1996;312:1642–6. 10.1136/bmj.312.7047.1642. [PMC free article: PMC2351368] [PubMed: 8664717] [CrossRef]
19.
Boter H, De Haan RJ, Rinkel GJ. Clinimetric evaluation of a Satisfaction-with-Stroke-Care questionnaire. J Neurol 2003;250:534–41. 10.1007/s00415-003-1031-2. [PubMed: 12736731] [CrossRef]
20.
Dennis M, O’Rourke S, Slattery J, Staniforth T, Warlow C. Evaluation of a stroke family care worker: results of a randomised controlled trial. BMJ 1997;314:1071–6. 10.1136/bmj.314.7087.1071. [PMC free article: PMC2126479] [PubMed: 9133884] [CrossRef]
21.
Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M. Evaluation of a stroke family support organiser: a randomized controlled trial. Stroke 2003;34:116–21. 10.1161/01.STR.0000047850.33686.32. [PubMed: 12511761] [CrossRef]
22.
Young JB. The primary care stroke gap. Br J Gen Pract 2001;51:787–8. [PMC free article: PMC1314121] [PubMed: 11677699]
23.
Murray J, Young J, Forster A, Herbert A, Ashworth R. Feasibility study of a primary care-based model for stroke aftercare. Br J Gen Pract 2006;56:775–80. [PMC free article: PMC1920718] [PubMed: 17007708]
24.
Murray J, Young J, Forster A, Ashworth R. Developing a primary care-based stroke model: the prevalence of longer-term problems experienced by patients and carers. Br J Gen Pract 2003;53:803–7. [PMC free article: PMC1314716] [PubMed: 14601359]
25.
Murray J, Ashworth R, Forster A, Young J. Developing a primary care-based stroke service: a review of the qualitative literature. Br J Gen Pract 2003;53:137–42. [PMC free article: PMC1314515] [PubMed: 12817361]
26.
Murray J. The Development of a Primary Care-Based Model for after Stroke Care. PhD thesis. Leeds: University of Leeds; 2007.
27.
Orrell M, Hancock G. The Camberwell Assessment of Need for the Elderly. London: Gaskell; 2004.
28.
Philp I. EASY-Care: a systematic approach to the assessment of older people. Geriatr Med 2000;30:15–19.
29.
National Institute for Health and Care Excellence. The Guidelines Manual, April 2007. URL: www​.nice.org.uk/niceMedia​/pdf/GuidelinesManualAllChapters​.pdf (accessed June 2014). [PubMed: 27905714]
30.
Kroenke K, Spitzer RL. The PHQ-9: a new depression and diagnostic severity measure. Psychiatr Ann 2002;32:509–21. 10.3928/0048-5713-20020901-06. [CrossRef]
31.
Hodkinson HM. Evaluation of a mental test score for assessment of mental impairment in the elderly. Age Ageing 1972;1:233–8. 10.1093/ageing/1.4.233. [PubMed: 4669880] [CrossRef]
32.
Allen KR, Hazelett S, Jarjoura D, Wickstrom GC, Hua K, Weinhardt J, et al. Effectiveness of a postdischarge care management model for stroke and transient ischemic attack: a randomized trial. J Stroke Cerebrovasc Dis 2002;11:88–98. 10.1053/jscd.2002.127106. [PubMed: 17903862] [CrossRef]
33.
Murray J, Young J, Forster A, Ashworth R. A survey to investigate the role of the district nurse in stroke care. Br J Community Nurs 2004;9:318–24. 10.12968/bjcn.2004.9.8.15352. [PubMed: 15365469] [CrossRef]
34.
Rothwell K, Boaden R, Bamford D, Tyrrell PJ. Feasibility of assessing the needs of stroke patients after six months using the GM-SAT. Clin Rehabil 2013;27:264–71. 10.1177/0269215512457403. [PMC free article: PMC3652600] [PubMed: 22952306] [CrossRef]
35.
Duncan PW, Wallace D, Lai SM, Johnson D, Embretson S, Laster LJ. The stroke impact scale version 2.0. Evaluation of reliability, validity, and sensitivity to change. Stroke 1999;30:2131–40. 10.1161/01.STR.30.10.2131. [PubMed: 10512918] [CrossRef]
36.
Forster A, Young J, Green J, Patterson C, Wanklyn P, Smith J, et al. Structured re-assessment system at 6 months after a disabling stroke: a randomised controlled trial with resource use and cost study. Age Ageing 2009;38:576–83. 10.1093/ageing/afp095. [PubMed: 19546253] [CrossRef]
37.
Green J, Forster A, Bogle S, Young J. Physiotherapy for patients with mobility problems more than 1 year after stroke: a randomised controlled trial. Lancet 2002;359:199–203. 10.1016/S0140-6736(02)07443-3. [PubMed: 11812553] [CrossRef]
38.
Collin C, Wade DT, Davies S, Home V. The Barthel ADL Index: a reliability study. Int Disability Studies 1988;10:61–3. [PubMed: 3403500]
39.
Wade DT, Legh-Smith J, Langton Hewer R. Social activities after stroke: measurement and natural history using the Frenchay Activities Index. Int Rehabil Med 1985;7:176–81. [PubMed: 4093249]
40.
Wade DT. Goal setting in rehabilitation: an overview of what, why and how. Clin Rehabil 2009;23:291–5. 10.1177/0269215509103551. [PubMed: 19293289] [CrossRef]
41.
Intercollegiate Stroke Working Party. National Clinical Guidelines for Stroke, 2nd edn. London: Royal College of Physicians; 2004.
42.
Thomas LH, Barrett J, Cross S, French B, Leathley M, Sutton C, et al. Prevention and treatment of urinary incontinence after stroke in adults. Cochrane Database Syst Rev 2005;3:CD004462. [PubMed: 16034933]
43.
Forster A, Smith J, Young J, Knapp P, House A, Wright J. Information provision for stroke patients and their caregivers. Cochrane Database Syst Rev 2001;3:CD001919. [PubMed: 11687003]
44.
Smith J, Forster A, Young J. Cochrane Group for information provision after stroke. Cochrane review: information provision for stroke patients and their caregivers. Clin Rehabil 2009;23:195–206. 10.1177/0269215508092820. [PubMed: 19218295] [CrossRef]
45.
Forster A, Brown L, Smith J, House A, Knapp P, Wright JJ, et al. Information provision for stroke patients and their caregivers. Cochrane Database Syst Rev 2012;11:CD001919. 10.1002/14651858.CD001919.pub3. [PMC free article: PMC6544775] [PubMed: 23152210] [CrossRef]
46.
Ellis G, Mant J, Langhorne P, Dennis M, Winner S. Stroke liaison workers for stroke patients and carers: an individual patient data meta-analysis. Cochrane Database Syst Rev 2010;5:CD005066. 10.1002/14651858.CD005066.pub2. [PMC free article: PMC6464840] [PubMed: 20464736] [CrossRef]
47.
Gillespie LD, Robertson MC, Gillespie WJ, Sherrington C, Gates S, Clemson LM, et al. Intervention for preventing falls in older people living in the community. Cochrane Database Syst Rev 2012;9:CD007146. [PMC free article: PMC8095069] [PubMed: 22972103]
48.
Nair RD, Lincoln NB. Cognitive rehabilitation for memory deficits following stroke. Cochrane Database Syst Rev 2007;3:CD002293. [PubMed: 17636703]
49.
Bowen A, Lincoln NB. Cognitive rehabilitation for spatial neglect following stroke. Cochrane Database Syst Rev 2007;2:CD003586. [PubMed: 17443528]
50.
Lincoln NB, Majid MJ, Weyman N. Cognitive rehabilitation for attention deficits following stroke. Cochrane Database Syst Rev 2000;4:CD002842. [PubMed: 11034773]
51.
Hackett ML, Anderson CS, House A, Haltech C. Interventions for preventing depression after stroke. Cochrane Database Syst Rev 2008;3:CD003689. [PubMed: 18646094]
52.
National Stroke Foundation. Clinical Guidelines for Stroke Management. Melbourne, VIC: National Stroke Foundation; 2010. URL: http:​//strokefoundation​.com.au/site/media​/Clinical_Guidelines​_Acute_Management_Recommendations_2010​.pdf (accessed June 2014).
53.
Lindsay P, Bayley M, McDonald A, Graham ID, Warner G, Phillips S. Toward a more effective approach to stroke: Canadian Best Practice Recommendations for Stroke Care. CMAJ 2008;178:1418–25. 10.1503/cmaj.071253. [PMC free article: PMC2374857] [PubMed: 18490636] [CrossRef]
54.
National Institute for Health and Care Excellence. Stroke Rehabilitation. Long-Term Rehabilitation after Stroke. June 2013. URL: www​.nice.org.uk/nicemedia​/live/14182/64098/64098.pdf (accessed June 2014).
55.
Intercollegiate Stroke Working Party. National Clinical Guidelines for Stroke, 4th edn. London: Royal College of Physicians; 2012.
56.
Forster A, Young J. Stroke rehabilitation: can we do better? BMJ 1992;305:1446–7. 10.1136/bmj.305.6867.1446. [PMC free article: PMC1884084] [PubMed: 1493386] [CrossRef]
57.
Young JM, Murray J, Forster A. Review of longer-term problems after disabling stroke. Rev Clin Gerontol 2003;13:55–65. 10.1017/S0959259803013157. [CrossRef]
58.
Young J. Is stroke better managed in the community? Community care allows patients to reach their full potential. BMJ 1994;309:1356–7. 10.1136/bmj.309.6965.1356. [PMC free article: PMC2541844] [PubMed: 7866086] [CrossRef]
59.
Murray J, Forster A, Young J. Survey to investigate the role of the community stroke care coordinator. Br J Community Nurs 2008;13:31–6. 10.12968/bjcn.2008.13.1.27981. [PubMed: 18399369] [CrossRef]
60.
Forster A, Young J, Nixon J, Chapman K, Murray J, Patel A, et al. Protocol of a cluster randomized trial evaluation of a patient and carer-centred system of longer-term stroke care (LoTS care) [published online ahead of print 19 February 2013]. Int J Stroke 2014. 10.1111/ijs.12038. [PubMed: 23418932] [CrossRef]
61.
Wade DT. Research into the black box of rehabilitation: the risks of a type III error. Clin Rehabil 2001;15:1–4. 10.1191/026921501675961253. [PubMed: 11237155] [CrossRef]
62.
Goldberg D, Williams P. A User’s Guide to the General Health Questionnaire. Windsor: NFER-Nelson; 1992.
63.
Stroke Unit Trialists’ Collaboration. Collaborative systematic review of the randomised trials of organised inpatient (stroke unit) care after stroke. BMJ 1997;314:1151–9. 10.1136/bmj.314.7088.1151. [PMC free article: PMC2126525] [PubMed: 9146387] [CrossRef]
64.
Royal College of Physicians. National Sentinel Audit for Stroke. London: Royal College of Physicians; 2006.
65.
Carter BR, Hood K. Balance algorithm for cluster randomized trials. BMC Med Res Methodol 2008;8:65. 10.1186/1471-2288-8-65. [PMC free article: PMC2588445] [PubMed: 18844993] [CrossRef]
66.
van Swieten J, Koudstaal P, Visser M, Schouten H, van Gijn J. Interobserver agreement for the assessment of handicap in stroke patients. Stroke 1988;19:604–7. 10.1161/01.STR.19.5.604. [PubMed: 3363593] [CrossRef]
67.
Brooke P, Bullock R. Validation of a 6 item cognitive impairment test with a view to primary care usage. Int J Geriatr Psychiatry 1999;14:936–40. 10.1002/(SICI)1099-1166(199911)14:11<936::AID-GPS39>3.0.CO;2-1. [PubMed: 10556864] [CrossRef]
68.
Gompertz P, Pound P, Ebrahim S. A postal version of the Barthel Index. Clin Rehabil 1994;8:233–9. 10.1177/026921559400800308. [CrossRef]
69.
Dennis M. Performance of a statistical model to predict stroke outcome in the context of a large, simple, randomized, controlled trial of feeding. Stroke 2003;34:127–33. [PubMed: 12511763]
70.
Brooks R. EuroQol: the current state of play. Health Policy 1996;37:53–72. 10.1016/0168-8510(96)00822-6. [PubMed: 10158943] [CrossRef]
71.
The EuroQol Group. EuroQol – a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199–208. 10.1016/0168-8510(90)90421-9. [PubMed: 10109801] [CrossRef]
72.
Krabbe P, Weijnen T. Guidelines for analysing and reporting EQ-5D outcomes. In Brooks R, Rabin R, De Cahrro F, editors. The Measurement and Valuation for Health Status using EQ-5D: a European Perspective (Evdience from the EuroQol BIOMED Research Programme). Dordrecht: Kluwer Academic Publishers; 2003. pp. 7–19. 10.1007/978-94-017-0233-1_2. [CrossRef]
73.
Patel A, Knapp M, Evans A, Perez I, Kalra L. Training care givers of stroke patients: economic evaluation. BMJ 2004;328:1102–4A. 10.1136/bmj.328.7448.1102. [PMC free article: PMC406320] [PubMed: 15130978] [CrossRef]
74.
Patel A, Knapp M, Perez I, Evans A, Kalra L. Alternative strategies for stroke care – cost-effectiveness and cost–utility analyses from a prospective randomized controlled trial. Stroke 2004;35:196–203. 10.1161/01.STR.0000105390.20430.9F. [PubMed: 14684783] [CrossRef]
75.
Forster A, Young J, Nixon J, Kalra L, Smithard D, Patel A, et al. A cluster randomized controlled trial of a structured training programme for caregivers of inpatients after stroke (TRACS). Int J Stroke 2012;7:94–9. 10.1111/j.1747-4949.2011.00722.x. [PubMed: 22111894] [CrossRef]
76.
Elmstahl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil 1996;77:177–82. 10.1016/S0003-9993(96)90164-1. [PubMed: 8607743] [CrossRef]
77.
Wade DT, Hewer RL. Functional abilities after stroke: measurement, natural history and prognosis. J Neurol Neurosurg Psychiatry 1987;50:177–82. 10.1136/jnnp.50.2.177. [PMC free article: PMC1031489] [PubMed: 3572432] [CrossRef]
78.
Parker CJ, Gladman JRF, Drummond AER, Dewey ME, Lincoln NB, Barer D, et al. A multicentre randomized controlled trial of leisure therapy and conventional occupational therapy after stroke. Clin Rehabil 2001;15:42–52. 10.1191/026921501666968247. [PubMed: 11237160] [CrossRef]
79.
Walker MF, Gladman JRF, Lincoln NB, Siemonsma P, Whiteley T. Occupational therapy for stroke patients not admitted to hospital: a randomised controlled trial. Lancet 1999;354:278–80. 10.1016/S0140-6736(98)11128-5. [PubMed: 10440303] [CrossRef]
80.
Ukoumunne OC, Gulliford MC, Chinn S, Sterne JA, Burney PG. Methods for evaluating area-wide and organisation-based interventions in health and health care: a systematic review. Health Technol Assess 1999;3(5). [PubMed: 10982317]
81.
Campbell MK, Mollison J, Grimshaw JM. Cluster trials in implementation research: estimation of intracluster correlation coefficients and sample size. Stat Med 2001;20:391–9. 10.1002/1097-0258(20010215)20:3<391::AID-SIM800>3.0.CO;2-Z. [PubMed: 11180309] [CrossRef]
82.
Dolan P, Gudex C, Kind P, Williams A. A Social Tariff for EuroQol: Results from a UK Population Survey. Discussion paper 138. York: University of York; 1995.
83.
van Hout BA, Al MJ, Gordon GS, Rutten FF. Costs, effects and C/E-ratios alongside a clinical trial. Health Econ 1994;3:309–19. 10.1002/hec.4730030505. [PubMed: 7827647] [CrossRef]
84.
Department of Health. NHS Trust Reference Cost Schedules, 2010–2011. URL: www​.dh.gov.uk/en/Publicationsandstatistics​/Publications/PublicationsPolicyAndGuidance/DH_131140 (accessed 28 August 2012).
85.
Katbamna S, Matthews R. Ageing & Ethnicity in England. A Demographic Profile of BME Older People in England. London: Age Concern; 2007.
86.
Medical Research Council. URL: www​.mrc.ac.uk/complexinterventionsguidance (accessed 26 August 2014).
87.
Dowswell G, Lawler J, Dowswell T, Young J, Forster A, Hearn J. Investigating recovery from stroke: a qualitative study. J Clin Nurs 2000;9:507–15. 10.1046/j.1365-2702.2000.00411.x. [PubMed: 11261130] [CrossRef]
88.
Alvarado N. The LoTS (Longer-Term Stroke) System of Care: an Evaluation of its Local Implementation at Two Community Stroke Services. PhD thesis. Leeds: University of Leeds; 2013.
89.
Adamson J, Beswick A, Ebrahim S. Is stroke the most common cause of disability? J Stroke Cerebrovasc Dis 2004;13:171–7. 10.1016/j.jstrokecerebrovasdis.2004.06.003. [PubMed: 17903971] [CrossRef]
90.
Jorgensen L, Engstad T, Jacobsen BK. Self-reported urinary incontinence in noninstitutionalized long-term stroke survivors: a population-based study. Arch Phys Med Rehabil 2005;86:416–20. 10.1016/j.apmr.2004.05.011. [PubMed: 15759221] [CrossRef]
91.
Healthcare Commission. Caring for People after They Have Had a Stroke: a Follow up Survey of Patients. London: Healthcare Commission; 2006.
92.
Jonsson AC, Lindgren I, Hallstrom B, Norrving B, Lindgren A. Prevalence and intensity of pain after stroke: a population based study focusing on patients’ perspectives. J Neurol Neurosurg Psychiatry 2006;77:590–5. 10.1136/jnnp.2005.079145. [PMC free article: PMC2117435] [PubMed: 16354737] [CrossRef]
93.
Hartman-Maeir A, Soroker N, Ring H, Avni N, Katz N. Activities, participation and satisfaction one-year post stroke. Disabil Rehabil 2007;29:559–66. 10.1080/09638280600924996. [PubMed: 17453976] [CrossRef]
94.
Wolfe CD, Crichton SL, Heuschmann PU, McKevitt CJ, Toschke AM, Grieve AP, et al. Estimates of outcomes up to ten years after stroke: analysis from the prospective South London Stroke Register. PLOS Med 2011;8:e1001033. 10.1371/journal.pmed.1001033. [PMC free article: PMC3096613] [PubMed: 21610863] [CrossRef]
95.
Scottish Executive. Fair Care for Older People: Care Development Group Report. Edinburgh: Scottish Executive; 2001.
96.
Wright J, Williams R, Wilkinson JR, Development and importance of health needs assessment. BMJ 1998;316:1310. 10.1136/bmj.316.7140.1310. [PMC free article: PMC1113037] [PubMed: 9554906] [CrossRef]
97.
Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Arch Phys Med Rehabil 2002;83:1052–9. 10.1053/apmr.2002.34283. [PubMed: 12161825] [CrossRef]
98.
Carter J, Mant F, Mant J, Wade D, Winner S. Comparison of postal version of the Frenchay Activities Index with interviewer-administered version for use in people with stroke. Clin Rehabil 1997;11:131–8. 10.1177/026921559701100206. [PubMed: 9199865] [CrossRef]
99.
Kersten P, McLellan L, George S, Smith JA. The Southampton Needs Assessment Questionnaire (SNAQ): a valid tool for assessing the rehabilitation needs of disabled people. Clin Rehabil 2000;14:641–50. 10.1191/0269215500cr373oa. [PubMed: 11128740] [CrossRef]
100.
Kersten P, Low JT, Ashburn A, George SL, McLellan DL. The unmet needs of young people who have had a stroke: results of a national UK survey. Disabil Rehabil 2002;24:860–6. 10.1080/09638280210142167. [PubMed: 12450462] [CrossRef]
101.
Duncan PW, Reker DM, Horner RD, Samsa GP, Hoenig H, LaClair BJ, et al. Performance of a mail-administered version of a stroke-specific outcome measure, the Stroke Impact Scale. Clin Rehabil 2002;16:493–505. 10.1191/0269215502cr510oa. [PubMed: 12194620] [CrossRef]
102.
Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983;67:361–70. 10.1111/j.1600-0447.1983.tb09716.x. [PubMed: 6880820] [CrossRef]
103.
Nouri F, Lincoln N. An extended activities of daily living scale for stroke patients. Clin Rehabil 1987;1:301–5. 10.1177/026921558700100409. [CrossRef]
104.
Murray J, Young J, Forster A. Response and completion rates for postal outcomes booklets for use in stroke rehabilitation. Int J Ther Rehabil 2007;14:440–5. 10.12968/ijtr.2007.14.10.27395. [CrossRef]
105.
Enderby PM, Wood VA, Wade DT. Frenchay Aphasia Screening Test. Chichester: John Riley; 2006.
106.
Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN. The Self-Administered Comorbidity Questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Rheum 2003;49:156–63. 10.1002/art.10993. [PubMed: 12687505] [CrossRef]
107.
Geddes JM, Fear J, Tennant A, Pickering A, Hillman M, Chamberlain MA. Prevalence of self reported stroke in a population in northern England. J Epidemiol Community Health 1996;50:140–3. 10.1136/jech.50.2.140. [PMC free article: PMC1060241] [PubMed: 8762377] [CrossRef]
108.
Ware J, Jr, Kosinski M, Keller SD. A 12-item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996;34:220–33. 10.1097/00005650-199603000-00003. [PubMed: 8628042] [CrossRef]
109.
Rasch G. Probabilistic Models for Some Intelligence and Attainment Tests. Copenhagen: Danish Institute for Educational Research; 1960.
110.
Linacre JM. Sample size and item calibration stability. Rasch Meas Trans 1994;7:328.
111.
Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas 1960;20:37–46. 10.1177/001316446002000104. [CrossRef]
112.
Altman DG. Practical Statistics for Medical Research. London: Chapman and Hall; 1991.
113.
Fitzpatrick R, Davey C, Buxton MJ, Jones DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998;2(14). [PubMed: 9812244]
114.
Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951;16:297–334. 10.1007/BF02310555. [CrossRef]
115.
DeVelliss RF. Classical test theory. Med Care 2006;44:S50–9. 10.1097/01.mlr.0000245426.10853.30. [PubMed: 17060836] [CrossRef]
116.
Sijtsma K. On the use, the misuse, and the very limited usefulness of Cronbach’s alpha. Psychometrika 2009;74:107–20. 10.1007/s11336-008-9101-0. [PMC free article: PMC2792363] [PubMed: 20037639] [CrossRef]
117.
Tennant A, Conaghan P. The Rasch measurement model in rheumatology: what is it and why use it? When should it be applied, and what should one look for in a Rasch paper? Arthritis Rheum 2007;57:1358–62. 10.1002/art.23108. [PubMed: 18050173] [CrossRef]
118.
Pallant JF, Tennant A. An introduction to the Rasch measurement model: an example of using the Hospital Anxiety and Depression Scale (HADS). Br J Clin Psychol 2007;46:1–18. 10.1348/014466506X96931. [PubMed: 17472198] [CrossRef]
119.
LoTS care LUNS study team. Validation of the longer-term unmet needs after stroke (LUNS) monitoring tool: a multicentre study. Clin Rehabil 2013;27:1020–8. 10.1177/0269215513487082. [PubMed: 23787941] [CrossRef]
120.
Intercollegiate Stroke Working Party. Stroke Improvement National Audit Programme (SINAP). London: Royal College of Physicians; 2012.
121.
Kline P. A Psychometrics Primer. London: Free Association Books; 2000.
122.
Robison J, Wiles R, Ellis-Hill C, McPherson K, Hyndman D, Ashburn A. Resuming previously valued activities post-stroke: who or what helps? Disabil Rehabil 2009;31:1555–66. 10.1080/09638280802639327. [PubMed: 19479573] [CrossRef]
123.
Ellis-Hill C, Payne S, Ward C. Self-body split: issues of identity in physical recovery following stroke. Disabil Rehabil 2000;22:725–33. 10.1080/09638280050191990. [PubMed: 11117592] [CrossRef]
124.
Burvill PW, Johnson GA, Jamrozki KD, Anderson CS, Stewart-Wynne, Chakera TMH. Prevalence of depression after stroke: the Perth Community Stroke Study. Br J Psychiatry 1995;166:320–7. 10.1192/bjp.166.3.320. [PubMed: 7788123] [CrossRef]
125.
Burvill PW, Johnson GA, Jamrozki KD, Anderson CS, Stewart-Wynne, Chakera TMH. Anxiety disorders after stroke: results from the Perth Community Stroke Study. Br J Psychiatry 1995;166:328–32. 10.1192/bjp.166.3.328. [PubMed: 7788124] [CrossRef]
126.
Bury M. Chronic illness as biographical disruption. Sociol Health Illn 1982;4:167–82. 10.1111/1467-9566.ep11339939. [PubMed: 10260456] [CrossRef]
127.
Sanders C, Donovan J, Dieppe P. The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies. Sociol Health Illn 2002;24:227–53. 10.1111/1467-9566.00292. [CrossRef]
128.
Pound P, Gompertz P, Ebrahim S. Social and practical strategies described by people living at home with stroke. Health Soc Care Community 1999;7:120–8. 10.1046/j.1365-2524.1999.00168.x. [PubMed: 11560628] [CrossRef]
129.
Lackner S, Goldenberg S, Arrizza G, Tjosvold I. The contingency of social support. Qual Health Res 1994;4:224–43. 10.1177/104973239400400206. [CrossRef]
130.
Morgan M, Patrick DL, Charlton JR. Social networks and psychosocial support among disabled people. Soc Sci Med 1984;19:489–97. 10.1016/0277-9536(84)90044-3. [PubMed: 6237417] [CrossRef]
131.
Glass TA, Maddox GL. The quality and quantity of social support: stroke recovery as psycho-social transition. Soc Sci Med 1992;34:1249–61. 10.1016/0277-9536(92)90317-J. [PubMed: 1641684] [CrossRef]
132.
Sabari JS, Meisler J, Silver E. Reflections upon rehabilitation by members of a community based stroke club. Rehabil Pract 2000;22:330–6. [PubMed: 10877487]
133.
Mold F, McKevitt C, Wolfe C. A review and commentary of the social factors which influence stroke care: issues of inequality in qualitative literature. Health Soc Care Community 2003;11:405–14. 10.1046/j.1365-2524.2003.00443.x. [PubMed: 14498837] [CrossRef]
134.
Wenger GC, Davies R, Shahtahmasebi S, Scott A. Social isolation and loneliness in old age: review and model refinement. Ageing Soc 1996;16:333–58. 10.1017/S0144686X00003457. [CrossRef]
135.
House JS. Social isolation kills, but how and why? Psychosom Med 2001;63:273–4. 10.1097/00006842-200103000-00011. [PubMed: 11292275] [CrossRef]
136.
Cacioppo JT, Hawkley LC. Social isolation and health, with an emphasis on underlying mechanisms. Perspect Biol Med 2003;46:S39–52. 10.1353/pbm.2003.0049. [PubMed: 14563073] [CrossRef]
137.
Lund R, Nilsson CJ, Avlund K. Can the higher risk of disability onset among older people who live alone be alleviated by strong social relations? A longitudinal study of non-disabled men and women. Age Ageing 2010;39:319–26. 10.1093/ageing/afq020. [PubMed: 20208073] [CrossRef]
138.
Charmaz K. Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. London: Sage; 2006.
139.
Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine Publishing; 1967.
140.
Charmaz K. Grounded theory: objectivist and constructivist methods. In Denzin NK, Lincoln YS, editors. Handbook of Qualitative Research. London: Sage; 2000. pp. 509–35.
141.
Furness PJ, Garrud P. Adaptation after facial surgery: using the diary as a research tool. Qual Health Res 2010;20:262–72. 10.1177/1049732309357571. [PubMed: 20065309] [CrossRef]
142.
Plummer K. Documents of Life 2: An Invitation to Critical Humanism. London: Sage; 2001.
143.
Corti L. Using diaries in social research. In Surrey UO, editor. Social Research Update. Guildford: University of Surrey; 1993. URL: http://sru​.soc.surrey.ac.uk/SRU2.html (accessed March 2010).
144.
Elliott H. The use of diaries in sociological research on health experience. Sociol Res Online 1997;2(2). URL: www​.socresonline.org.uk/2/2/7.html (accessed March 2010). 10.5153/sro.38. [CrossRef]
145.
Jones RK. The unsolicited diary as a qualitative research tool for advanced research capacity in the field of health and illness. Qual Health Res 2000;10:555–67. 10.1177/104973200129118543. [PubMed: 11010078] [CrossRef]
146.
Jacelon CS, Imperio K. Participant diaries as a source of data in research with older adults. Qual Health Res 2005;15:991–7. 10.1177/1049732305278603. [PubMed: 16093375] [CrossRef]
147.
Plummer K. Documents of Life. London: George Allen and Unwin; 1983.
148.
Antonucci TC. Hierarchical mapping technique. Generations 1986;10:10–12.
149.
Charmaz K, Mitchell RG. Grounded theory in ethnography. In Atkinson P, Coffey A, Delamont S, Lofland J, Lofland L. Handbook of Ethnography. London: Sage; 2001. pp. 160–74. 10.4135/9781848608337.n11. [CrossRef]
150.
Godfrey M, Townsend J. Older people in transition from illness to health: trajectories of recovery. Qual Health Res 2008;18:939–51. 10.1177/1049732308318038. [PubMed: 18552320] [CrossRef]
151.
Glaser BG, Strauss AL. Time for Dying. New Brunswick, NJ: Aldine De Gruyter; 2007.
152.
Strauss AL, Corbin J, Fagerhaugh S, Glaser BG, Maines D, Suczek B, et al. Chronic Illness and the Quality of Life. St Louis, MO: Mosby; 1984.
153.
Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qual Sociol 1985;8:224–47. 10.1007/BF00989485. [CrossRef]
154.
Seale C. Quality and credibility. In Seale C, Gobo G, Gubrium JF, Silverman D, editors. Qualitative Research Practice. London: Sage; 2004. pp. 379–89. 10.4135/9781848608191.d32. [CrossRef]
155.
Silverman D. Validity and credibility in qualitative research. In Miller G, Dingwall R, editors. Context and Method in Qualitative Research. London: Sage; 1997. pp. 12–25.
156.
Silverman D. Interpreting Qualitative Data, 3rd edn. London: Sage; 2006.
157.
Mays N, Pope C. Qualitative research in health care: assessing quality in qualitative research. BMJ 2000;320:50. 10.1136/bmj.320.7226.50. [PMC free article: PMC1117321] [PubMed: 10617534] [CrossRef]
158.
Pound P, Gompertz P, Ebrahim S. Illness in the context of older age: the case of stroke. Sociol Health Illn 1998;20:489–506. 10.1111/1467-9566.00112. [CrossRef]
159.
Faircloth CA, Boylstein C, Rittman M, Young ME, Gubrium J. Sudden illiness and biographical flow in narratives of stroke recovery. Sociol Health Illn 2004;26:242–61. 10.1111/j.1467-9566.2004.00388.x. [PubMed: 15027986] [CrossRef]
160.
Becker G, Kaufman SR. Managing an uncertain illness trajectory in old age: patients’ and physicians’ views of stroke. Med Anthropol Q 1995;9:165–87. 10.1525/maq.1995.9.2.02a00040. [PubMed: 7671113] [CrossRef]
161.
Dworzynski K, Ritchie G, Fenu E, Macdermott K, Playford ED. Rehabilitation after stroke: summary of NICE guidance. BMJ 2013;346:f3615. 10.1136/bmj.f3615. [PubMed: 23760965] [CrossRef]
162.
Academy of Medical Science. A New Pathway for the Regulation and Governance of Health Research. London: Academy of Medical Sciences; 2011. URL: www​.acmedsci.ac.uk/download​.php?file=/images​/project/130734957423.pdf (accessed September 2014).
163.
Johnson J, Pearson V. The effects of a structured education course on stroke survivors living in the community. Rehabil Nurs 2000;25:59–65. 10.1002/j.2048-7940.2000.tb01864.x. [CrossRef]
164.
Cameron JI, Gignac MAM. ‘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;70:305–14. 10.1016/j.pec.2007.10.020. [PubMed: 18155388] [CrossRef]
165.
Eames S, Hoffmann T, Worrall L, Read S, Wong A. Randomised controlled trial of an education and support package for stroke patients and their carers [published online ahead of print 8 May 2013]. BMJ Open 2013;3(5). URL: http://bmjopen​.bmj.com​/content/3/5/e002538.full (accessed October 2013). [PMC free article: PMC3651972] [PubMed: 23657469]
166.
Corben S, Rosen R. Self-Management for Long-Term Conditions. London: The King’s Fund; 2005.
167.
Anonymous. Psychological Care after Stroke. The Stepped Approach. URL: www​.improvement.nhs.uk​/stroke/Psychologicalcareafterstroke​/Stepped.aspx (accessed October 2013).
168.
de Silva D. Evidence: Helping People to Help Themselves: a Review of the Evidence of Considering Whether it is Worthwhile to Support Self-Management. London: Health Foundation; 2011.
169.
Cadilhac DA, Hoffmann S, Kilkenny M, Lindley R, Lalor E, Osborne RH, et al. A phase II multicentered, single-blind, randomized, controlled trial of the stroke self-management program. Stroke 2011;42:1673–9. 10.1161/STROKEAHA.110.601997. [PubMed: 21493910] [CrossRef]
170.
Lennon S, McKenna S, Jones F. Self-management programmes for people post stroke: a systematic review. Clin Rehabil 2013;27:867–78. 10.1177/0269215513481045. [PubMed: 23543340] [CrossRef]
171.
Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al. A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial. Health Technol Assess 2013;17(46). 10.3310/hta17460. [PMC free article: PMC4967811] [PubMed: 24153026] [CrossRef]
172.
Forster A, Young J. Research networks for stroke rehabilitation: opportunities and barriers. Clin Med 2005;5:42–6. 10.7861/clinmedicine.5-1-42. [PMC free article: PMC4954066] [PubMed: 15745197] [CrossRef]
173.
Thorpe KE, Zwarenstein M, Oxman AD, Treweek S, Furberg CD, Altman DG, et al. A pragmatic explanatory continuum indicator summary (PRECIS): a tool to help trial designers. CMAJ 2009;180:E47–57. 10.1503/cmaj.090523. [PMC free article: PMC2679824] [PubMed: 19372436] [CrossRef]
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