Relatives' information needs and the characteristics of their search for information - in the words of relatives of stroke survivors

Journal of Clinical Nursing

Volumn 19, Issue 19-20, 2010, Pages 2888-2896

  Wallengren, Catarina ^a   Segesten, Kerstin ^a   Friberg, Febe ^b  

^a UNIVERSITY OF BORÅS   (Sweden)

^b UNIVERSITY OF STAVANGER   (Norway)

Author keywords

Content analysis; Experiences; Knowledge need; Relatives; Stroke

Indexed keywords

ARTICLE; FAMILY; HEALTH SERVICE; HUMAN; PSYCHOLOGICAL ASPECT; STROKE; SURVIVOR;

FAMILY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; STROKE; SURVIVORS;

EID: 77956791090     PISSN: 09621067     EISSN: 13652702     Source Type: Journal    
DOI: 10.1111/j.1365-2702.2010.03259.x     Document Type: Article

References (44)

1. Andersson M, Hallberg IR, Edberg A-K. Older people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: a qualitative study. International Journal of Nursing Studies 2008, 45:818-828.
2. Nicomachean Ethics 2000, Cambridge University Press, Cambridge
3. Bakas T, Austin JK, Okonkwo KF, Lewis RR, Chadwick L. Needs, concerns, strategies and advice of stroke caregivers the first 6 months after discharge. Journal of Neuroscience Nursing 2002, 34:242-251.
4. Brereton L, Nolan M. 'You do know he's had a stroke, don't you?' Preparation for family care-giving - the neglected dimension. Journal of Clinical Nursing 2000, 9:498-506.
5. Brereton L, Nolan M. 'Seeking': a key activity for new family carers of stroke survivors. Journal of Clinical Nursing 2002, 11:22-31.
6. Elkins JS, Johnston SC. Thirty-year projections for deaths from ischemic stroke in the United States. Stroke 2003, 34:2109-2112.
7. Falk A-C, von Wendt I, Klang B. Informational needs in families after their child's mild head injury. Patient Education and Counseling 2008, 70:251-255.
8. Gustavsson B. Kunskapsfilosofi: tre kunskapsformer i historisk belysning (Philosophy of Epistemology: Three Forms of Knowledge in a Historic Light) 2000, Wahlström & Widstrand, Stockholm
9. Hanger HC, Walker G, Paterson LA, McBride S, Sainsbury R. What do patients and their carers want to know about stroke? A two-year follow-up study. Clinical Rehabilitation 1998, 12:45-52.
10. van den Heuvel ETP, de Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. Long-term effects of a group support program and an individual support program for informal caregivers of stroke patient. Which caregiver benefits the most? Patient Education and Counseling 2002, 47:291-299.
11. Hinojosa MS, Rittman MR. Stroke caregiver information needs; comparison of Mainland and Puerto Rican caregivers. Journal of Rehabilitation Research and Development 2007, 44:649-658.
12. Johansson L, Sundström G. Anhörigvårdens omfattning i Sverige (The extent of the care of relatives in Sweden). Socialmedicinsk Tidsskrift 2002, 2:119-138.
13. Jullamate P, de Azeredo Z, Pául C. Thai stroke patient caregivers: who they are and what they need. Cerebrovascular Disease 2006, 21:128-133.
14. Kerr SM, Smith LN. Stroke: an exploration of the experience of informal caregiving. Clinical Rehabilitation 2001, 15:428-436.
15. Krippendorff K. Content Analysis: An Introduction to its Methodology 2004, Sage, Beverly Hills, CA
16. Langhorne P, Pollock A. What are the components of effective stroke unit care? Age and Ageing 2002, 3:365-371.
17. Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M. Evaluation of a stroke family support organiser. A randomized controlled trial. Stroke 2003, 34:116-121.
18. Lindhardt T, Bolmsjö IA, Rahm Hallberg I. Standing guard - being a relative to a hospitalised, elderly person. Journal of Aging Studies 2006, 20:133-149.
19. Mackay J, Mensah GA, Mendis S, Greenlund K. The atlas of heart disease and stroke. 2004, http://www.who.int/cardiovascular_diseases/resources/atlas/en/, Geneva World Health Organization (WHO), Geneva, Available at: (accessed 1 November 2008)
20. Mackenzie A, Perry L, Lockhart E, Cottee M, Cloud G, Mann H. Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring. Disability & Rehabilitation 2007, 29:111-121.
21. Mak AKM, Mackenzie A, Lui MHL. Changing needs of Chinese family caregivers of stroke survivors. Journal of Clinical Nursing 2007, 16:971-979.
22. Mant J, Carter J, Wade DT, Winner S. The impact of an information pack on patients with stroke and their carers: a randomized controlled trial. Clinical Rehabilitation 1998, 12:465-476.
23. Mant J, Carter J, Wade DT, Winner S. Family support for stroke, a randomized controlled trial. Lancet 2000, 356:808-813.
24. Mishler EG. Research Interviewing Context and Narrative 1991, Harvard University Press, Camebridge
25. Morse JM, Barrett M, Mayan M, Olson K, Spiers J. Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Method 2002, 1:1-19.
26. O'Connell B, Baker L. Managing as carers of stroke survivors: strategies from field. International Journal of Nursing Practice 2004, 10:121-126.
27. O'Connell B, Baker L, Prosser A. The educational needs of caregivers of stroke survivors in acute and community settings. Journal of Neuroscience Nursing 2003, 35:21-28.
28. Analyserande rapport från riksstroke: För helåret 2006. (The Swedish National Registry for Quality Assessment of Acute Stroke Care, Report Year 2006). 2006, http://www.riks-stroke.org/content/analyser/Rapport06.pdf, Stockholm. Available at: (accessed 1 November 2008)
29. Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R. Randomized controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke 1999, 30:2585-2591.
30. Rosenthal SG, Pituch MJ, Greninger LO, Metress ES. Perceived needs of wives of stroke patients. Rehabilitation Nursing 1993, 18:148-153.
31. Sit JWH, Bong TKS, Clinton M, Li LSW, Fong Y. Stroke care in the home: the impact of social support on the general health of family caregivers. Journal of Clinical Nursing 2004, 13:816-824.
32. van der Smagt-Duijnstee M, Hamers J, Huijer Abu-Saad H. Relatives of stroke patients- their experiences and needs in hospital. Scandinavian Journal of Caring Science 2000, 14:44-51.
33. van der Smagt-Duijnstee ME, Hamers JPH, Abu-Saad HH, Zuidhof A. Relatives of hospitalized stroke patients: their needs for information, counseling and accessibility. Journal of Advanced Nursing 2001, 33:307-315.
34. Smith A, Lauret R, Peery A, Meuller T. Caregiver needs; a qualitative exploration. Clinical Gerontologist 2001, 24:3-26.
35. Smith J, Forster A, Young J. a) A randomized trial to evaluate and education programme for patients and carers after stroke. Clinical Rehabilitation 2004a, 18:726-736.
36. Smith LN, Lawrence M, Kerr SM, Langhorn P, Kennedy RL. b) Informal carer' experience of caring for stroke survivors. Journal of Advanced Nursing 2004b, 46:235-244.
37. Kompetensbeskrivning för legitimerad sjuksköterska (Competence Description for Registered Nurses). Stockholm: Socialstyrelsen (The National Swedish Board of Health and Welfare). 2005, http://www.socialstyrelsen.se/NR/rdonlyres/33C8D178-0CDC-420A-B8B4-2AAF01FCDFD9/3113/20051052.pdf, Available at: (accessed 23 March 2009)
38. Streutbert Speciale HJ, Rinaldi Carpenter D. Qualitative Research in Nursing. Advancing the Humanistic Imperative 2003, Lippincott, Williams & Wilkins, Philadelphia
39. Truelsen T, Piechowski-Jóźwiak B, Bonita R, Mathers C, Bogousslavsky J, Boysen G. Stroke incidence and prevalence in Europe: a review of available data. European Journal of Neurology 2006, 13:581-598.
40. van Veenedaal H, Grinspun DR, Adriaanse HP. Educational needs of stroke survivors and their family members, as perceived by themselves and by health professionals. Patient Education and Counseling 1996, 2:265-276.
41. Wachters-Kaufmann C, Schuling J, The H, Meyboom-de Jong B. Actual and desired information provision after a stroke. Patient Education and Counseling 2005, 56:211-217.
42. Wallengren C, Segesten K, Friberg F. Like a shadow - on becoming a stroke victim's relative. Scandinavian Journal of Caring Sciences 2008a, 22:48-55.
43. Wallengren C, Segesten K, Friberg F. Struggling for freedom - lived experiences of being a relative of a stroke survivor in the first six months after hospital and discharge. International Journal of Qualitative Studies on Health and Well-Being 2008b, 3:230-238.
44. Wallsten S. Effects of caregiving, gender and race on the health mutuality and social support of older couples. Journal of Aging Health 2000, 12:90-111.