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Table 3 Summary of qualitative studies

From: Health state descriptions to elicit stroke values: do they reflect patient experience of stroke?

  Author & date Title of article Country Sample characteristics Details
1 Nilsson I, Jansson L, Norberg A. 1997 [45] To meet with stroke: Patients’ experiences and aspects seen through a screen of crises. Sweden n =10 Narrative interviews one month and two months after discharge. Phenomenological hermeneutic analysis.
9 male, 1 female
Age: 53-81
2 Pound P, Gompertz P, Ebrahim S. 1998 [49] Illness in the context of older age: The case of stroke. UK n =40 In-depth semi-structured interviews. Grounded theory and constant comparison.
21 male, 19 female
Age: 40-87
Predominantly working-class elderly
3 Pound P, Gompertz P, Ebrahim S. 1998 [57] A patient-centred study of the consequences of stroke. UK As above As above
4 Wyller, T.B; Kirkevold, M. 1999 [58] How does a cerebral stroke affect quality of life? Towards an adequate theoretical account. Norway n =6 Interviewed three years after stroke. Thematic analysis
4 male, 2 female.
Age: 65-85
5 Pilkington F. 1999 [59] A qualitative study of life after stroke. Canada n =13 32 interviews at 3 time points: during acute stay, 1 month and 3 months after stroke. Longitudinal descriptive exploratory analysis.
9 male, 4 female
Age: 40-91
6 Secrest J, Thomas S. 1999 [46] Continuity and discontinuity: the quality of life following stroke. US n =14 Interviewed between nine months and 23 years after stroke. Existential phenomenological methodology.
7 male, 7 female
Age: 40-93
7 Ellis-Hill CS, Payne S, Ward C. 2000 [51] Self-body split: Issues of identity in physical recovery following a stroke. UK n =8 Life narrative approach, interviews during hospital stay, 6 months and one year post-discharge. Twenty four interviews in total.
5 male, 3 female
Age: 56-82
8 Bendz M. 2000 [53] Rules of relevance after a stroke Sweden n =10 Interviews three to four months after incident. Medical records also analysed. Discourse analysis.
6 male, 4 female
Age: 58-65
1st time stroke survivors
9 Dowswell GP, Lawler JP, Dowswell TP, Young JF, Forster AP, Hearn JP. 2000 [60] Investigating recovery from stroke: A qualitative study. UK n =30 Interviews after an RCT, 13-16 months post-stroke. Thematic analysis.
stroke patients
15 caregivers
10 Burton CR. 2000 [39] Living with stroke: A phenomenological study. UK n =6 Tracked for 12 months after stroke. 73 interviews in total. Phenomenology and grounded theory methods.
2 male, 4 female
Age: 52-81
11 Eaves YD. 2000 [50] `What happened to me’: Rural African American elders’ experiences of stroke US n =8 Descriptive narrative analysis.
2 male, 6 female
Age: 56-79
African American elders
10 care-givers
12 O’Connell B, Hanna B, Penney W, Pearce J, Owen M, Warelow P. 2001 [38] Recovery after stroke: A qualitative perspective. Australia Stroke survivors Five focus groups, three with stroke survivors, 2-180 months after stroke, one with carers, and one with key informants. Total of 40 participants. Content analysis
Age: 20-89
Carers and key informants
13 Kirkevold M. 2002 [61] The unfolding illness trajectory of stroke. Norway n =9 63 interviews. First interview 1-2 weeks after onset. Prospective and longitudinal case studies
mild to moderately affected stroke patients
14 Hilton E. 2002 [54] The meaning of stroke in elderly women: a phenomenological investigation. US n =5 Interviewed twice in non-institutionalised settings at least 1 year post-stroke. Hermeneutic phenomenology.
Elderly women
Age: 66-80 years
15 Gubrium JF, Rittman MR, Williams C, Young ME, Boylstein CA. 2003 [62] Benchmarking as everyday functional assessment in stroke recovery. US Male stroke survivors of various ages and from three ethnic groups (Hispanic, African American, and non-Hispanic White) 40 in-depth qualitative interviews one month following discharge
16 Kvigne K, Kirkevold M. 2003 [41] Living with bodily strangeness: Women’s 17experiences of their changing and unpredictable body following a stroke. Norway n =25 Interviewed three times: during 1st 6 weeks, 6 months and one year post-stroke. Phenomenological and feminist study.
25 female
Age: 37-78
Women in rural Norway
17 partnered
17 Kvigne K, Kirkevold M, Gjengedal E.2004 [42] Fighting back - struggling to continue life and preserve the self, following a stroke. Norway As above As above
18 Murray CD, Harrison B. 2004 [44] The meaning and experience of being a stroke survivor: an interpretative phenomenological analysis. UK n =10 5 interviewed, 5 corresponded by e-mail. Averaged 9 years post-stroke. Interpretative Phenomenological Analysis (IPA)
4 male, 6 female
Mean age: 48.8 years
19 Carlsson G, Möller A, Blomstrand C. 2004 [48] A qualitative study of the consequences of `hidden dysfunctions’ one year after a mild stroke in persons <75 years. Sweden n =15 Interviews analysed with grounded theory
8 male, 7 female
Age: 30-69
Patients with mild stroke living with spouse
20 Faircloth CA, Boylstein C, Rittman M, Gubrium JF. 2005 [52] Constructing the stroke: Sudden-onset narratives of stroke survivors. US n =111 In-depth interviews. Data collected at months1, 6, 12, 18 and 24 after discharge, but only data from 1, 6, and 12 reported here. Narrative interpretive method.
Male veterans
Average age: 67
From 3 ethnic groups: Puerto Rican Hispanic; African American, and non-Hispanic White.
21 Clarke P, Black SE. 2005 [55] Quality of life following stroke: Negotiating disability, identity, and resources. Canada n =8 Interviewed 7 months to 8 years post stroke. Selected principles of grounded theory used.
3 male, 5 female
Age: 60 and above
Living in a community dwelling
22 Lobeck M, Thompson AR, Shankland MC. 2005 [43] The experience of stroke for men in retirement transition. UK n =7 Interviewed more than 6 months post-stroke. Interpretative Phenomenological Analysis.
7 male
Age: 64-70
From a working class background.
23 Stone SD. 2005 [56] Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke. Canada n =22 Open ended in-depth interviews. Constant comparison method.
22 female
Age: 8-49 at the time of stroke
Age: 19-57 at the time of interview
From four different countries: Scotland, England, U.S. and Canada, majority Caucasian
24 Olofsson A, Andersson SO, Carlberg B. 2005 [63] `If only I manage to get home I’ll get better’-Interviews with stroke patients after emergency stay in hospital on their experiences and needs. Sweden n =9 Interviews with patients with experience of stroke approximately 4 months previously. Thematic analysis.
Age: 64-83
25 Alaszewski A, Alaszewski H, Potter J. 2006 [37] Risk, uncertainty and life threatening trauma: Analysing stroke survivor’s accounts of life after stroke. UK n =31 Interviews with survivor or carer in individual interviews or in focus groups. Analysis based on grounded theory.
Age: 38-89
26 Boylstein C, Rittman M, Hinojosa R. 2007 [47] Metaphor shifts in stroke recovery. US n =49 War veterans from Florida and Puerto Rico. In-depth interviews at month 1 and 6 post stroke. Grounded theory
49 male
27 Jones F, Mandy A, Partridge C. 2008 [40] Reasons for recovery after stroke: A perspective based on personal experience. Disability and Rehabilitation. UK n =10 Interviewed between 6 weeks and 13 months after onset. Phenomenological approach
6 male, 4 female
Mean age: 61.8
28 Popovich JM, Fox PG, Bandagi R. [64] Coping with stroke: Psychological and social dimensions in U.S. Patients. US n =60 Interviewed within the first two weeks after their stroke. Thematic analysis.
Age: 51-89
Ethnicity: Black